Join Our Mailing List
Email:
Visit our blog  Find us on Google+  Find us on Pinterest  Like us on Facebook  Follow us on Twitter

 

Safe Eggs
Log Out | Topics | Edit Profile
Forum Archive
 

Joint Pain / Quality of Life after Tr... Log Out | Topics | Register | Edit Profile

TransplantBuddies.org Forums » Kidney - Pancreas Transplant » Archive through September 05, 2010 » Popular Topics in our Kidney & Pancreas Forum » Joint Pain / Quality of Life after Transplant « Previous Next »


  Thread Original Poster Last Poster Posts Pages Last Post
  ClosedClosed: New threads not accepted on this page          

Author Message
KatieVT
Member
Username: Katievt

Post Number: 8
Registered: 08-2008
Posted on Monday, November 09, 2009 - 06:18 pm:   Edit Post Delete Post Print Post

Since May, I have had increasing joint pain in my knees, hips, and shoulders. Finally in August, a Rheumtologist diagnosed me with Calcineurin Inhibitor Induced Pain Syndrome - probably caused by an (doctor-induced) overdose of Rapamune earlier in the year. It was another month or so before the transplant team would transfer me off of Rapamune. I am now on Cyclosporine. There is no treatment for CIPS, but it is supposed to go away on its own. Instead it is getting worse.

I was put on Gabapentin in August, but it hasn't helped the pain. Last week, I was put on Prednisone - there's no improvement. I am increasingly becoming more disabled - I have to use a cane to walk around. On Saturday, I pushed through the pain to go to an event that I really wanted to go to (I've had to miss many events this summer); Sunday I couldn't move without crying and today is not much better. The transplant team now wants to put me on a painkiller, but I don't want to mask the problem or make my brain foggy (I'm in my senior year of college). However, I was in so much pain yesterday that my brain was overloaded with the pain and I spent the whole day staring at a blank Word document anyway.

Has anyone had any similar situations? I am a 22 year old who was otherwise healthy, except for my genetic kidney disease, before the transplant. My quality of life keeps getting worse. I'm frustrated, mad, and feel like the doctors have no clue what they are doing. I'm questioning why I got a transplant in the first place and that is making me feel both guilty and mad. Dialysis was not fun, but at least I could schedule my life around the dialysis sessions.
Katie
Senor-Loken syndrome - Juvenile Nephronophthisis and Retinitis Pigmentosa
Kidney Transplant 4/16/08 from an altruistic donor
Northern Vermont
Kim
Member
Username: Kendassa

Post Number: 4
Registered: 12-2007
Posted on Monday, November 09, 2009 - 09:00 pm:   Edit Post Delete Post Print Post

I am dealing with similar symptoms myself, I have severe joint pain in my shoulders, knees, and hip especially. In addition to that, more recently, I have pain literally all over, my chihuahua steps on my legs in the wrong place and it brings me to tears. My hubby tries to massage my shoulders, I have to make sure not to backhand him in reaction.

We have spent the last few years trying to figure out what is causing it. We know I have osteoporosis due to the prednisone. Have had multiple MRIs to make sure the bones aren't dying yet. After much frustration, my doc is trying me on fibromyalgia medication because that is about all left he can think of.

I often feel guilty and mad, and depressed because with the quality of life I have at the moment, I feel this transplant was wasted on me. It is hard to be in so much pain all the time, and I understand completely the guilt complex, and being mad at yourself because you feel you should be grateful for this second (in my case third) chance.

I do take Lorcet Plus/Vicodin whatever brand you want to call it, when my pain is more than I can tolerate. I don't see it as masking the problem but more as making it so I can make it through that day in the least amount of pain possible. Pain medication doesn't necessarily have to be a narcotic. And even if it is, they all affect each person differently. Not everyone, experiences side effects the same way. None of them really ever made my brain foggy, I didn't take any pain meds ever on clinical days in my nursing school, however on class days, if I was in pain, I took meds as needed. I graduated as an honor student.
First Kidney Transpant--02/26/96-MCG-Augusta, GA
Second Kidney Transplant--05/06/04-Emory-Atlanta, GA

I can do all things through Christ who strengthens me.
kakarp
Member
Username: Kakarp

Post Number: 45
Registered: 02-2009
Posted on Tuesday, November 10, 2009 - 09:46 am:   Edit Post Delete Post Print Post

Hello

I wasn’t going to reply to this post but now I feel compelled too. I’m 15 years post transplant and for the past oh maybe five years I’ve been dealing with pain too. It started off very mild. Cramps in my fingers, muscle cramps at night that would jolt me out of bed with tears and biting my lips so as not to wake my wife. Progressed into lower leg muscle aches and turned to pain if and when I walked to much as in a mall or large store.

I’ve had every test to find out why but nothing ever turned up. The pain now is awful, some days worse then others, and I walk with a cane for extra support because every now and then my legs will buckle under me. My arms, shoulders and hands also are adding to my pain as well. I’m also back on disability because of the pain and not being able to walk far or carry anything for long. Sure after having all kinds of tests I wish I too had an answer and was pain free. Sometimes I feel depressed and yes inadequate because I can’t do the things I use too. And can’t support the family as I use too because my disability income is nowhere near what I use to make when employed. Luckily my wife has a good job but I hate to see her so stressed.

I finally told my Dr’s that I’m done with all the test. No more needles or electros. As long as my kidney is working that is what is important to me so that I can still enjoy my family. My wife, children, grand kids. My son’s upcoming wedding, future grand kids and my dogs, I’ll live with the pain walk with a cane and enjoy life as best as I can. YES there are many times I still say or think “My life Stinks” (I do substitute stinks for another word). But I live one day at a time and am grateful that I have been given all this extra time to share my life with and enjoy the lives of my family and friends. I’m NOT going to say I don’t feel sorry for myself but I still try to do as much as I can. I have to stop and rest my legs and arms more often but I don’t let it stop me from living my extended life. Where would I or we be without the transplant? What would we have missed in life with out our transplant? Because of my transplant I now know what in life I would have missed.

I do hope you feel better soon.
Kevin
Kidney Transplant 10.17.1994
Received from my daughter
Living in central Mass.
jamie
Member
Username: Jamie

Post Number: 17
Registered: 01-2008
Posted on Tuesday, November 10, 2009 - 12:49 pm:   Edit Post Delete Post Print Post

Kim, are you taking Rapamune as well?, I was just wondering to see if there was a connection, as my doctors might put me on it in a couple of months.
Kim
Member
Username: Kendassa

Post Number: 8
Registered: 12-2007
Posted on Tuesday, November 10, 2009 - 12:52 pm:   Edit Post Delete Post Print Post

Kevin, I admire you strength.

Sounds very similar to everything I am going through currently.

Since all my other problems, increased allergies, and IBS symptoms included are associated with Fibromyalgia, I am wondering why this wasn't discussed as a possibility sooner. One condition that can explain multiple symptoms makes more sense than may things unrelated flaring up within days of each other and continuing for years. Also the onset of Fibromyalgia can be triggered by stress or trauma to the body, including surgery so, at least after talking to others in the same situation, I feel less like a crazy person and it isn't all in my head.

At any rate, I started a new medicine last night and although some of the side affects can be bad, many that it causes (like nausea) can't get worse for me.
First Kidney Transpant--02/26/96-MCG-Augusta, GA
Second Kidney Transplant--05/06/04-Emory-Atlanta, GA

I can do all things through Christ who strengthens me.
kakarp
Member
Username: Kakarp

Post Number: 46
Registered: 02-2009
Posted on Tuesday, November 10, 2009 - 01:31 pm:   Edit Post Delete Post Print Post

Hi Kim,

The last time I saw my primary Dr. he finally said it could be fibromyalgia and gave me a note with two different meds to asked my transplant Dr if I could take either one. I too am now taking one of them for the past two months and it really has not helped. So here I am still with the pain. Do I like, heck no but I still have a life to live and family to aggravate. And grand kids and nieces to tease. That’s why I’m called “pasty uncle Kevin” or “pasty grampy”. I learned 15 years ago that life is too short and can sneak up and bite your butt. Some days I have good days where I don’t use the cane as much. But most days I have to tolerate it go on.

As for fibromyalgia I have found that many doctors don’t what to recognize that as a true medical condition. They would rather try to find a cause or in my case tell me I can’t find anything wrong. Let’s try and see this doctor or that doctor. I felt like, OK I can’t find anything I’m going to pass this one on.

Kevin
Kidney Transplant 10.17.1994
Received from my daughter
Living in central Mass.
KatieVT
Member
Username: Katievt

Post Number: 9
Registered: 08-2008
Posted on Wednesday, November 11, 2009 - 02:11 am:   Edit Post Delete Post Print Post

Well, I saw my doctor today and I'm switching medications yet again. I've been on Prograf, Rapamune, and Cyclosporine in the 19 months since transplant.

She is going to slowly lower my Cyclosporine level to a trough level of 50 (not dose level), while increasing my Myfortic dose (hopefully to 720 mg). In the past, my WBC count tanks with the increase of Myfortic, but the latest change a few weeks ago had it staying steady. She is also going to keep me on Prednisone and see if a Myfortic/Prednisone regimen will make me feel better and keep my kidney happy.
Katie
Senor-Loken syndrome - Juvenile Nephronophthisis and Retinitis Pigmentosa
Kidney Transplant 4/16/08 from an altruistic donor
Northern Vermont
Kim
Member
Username: Kendassa

Post Number: 9
Registered: 12-2007
Posted on Wednesday, November 11, 2009 - 04:54 pm:   Edit Post Delete Post Print Post

I don't take rapamune, just prograf, prednisone and cellcept for my actual kidney..

Rapamune I took with my first transplant, after multiple acute rejection episodes but haven't with my second transplant, my kidney itself works too well to mess with my meds up til now.. waiting on most recent bloodwork and it just made me feel strange when I took it... and nauseated. :-)

I can't take Cyclosporin at all, it made my gums swell so bad with my first transplant it moved my bottom teeth so they are permanently crooked.

I have a hard time wrapping my mind around Fibromyalgia, more so than my doctor does. However, I have spoken to many people with FMS on another forum, and there are just too many people with too many similar problems to be a coincidence.

And because it ties in to the increase allergy problem I now have, my acid reflux, IBS, and all the sleep problems I have been battling for the past year, I am becoming more open minding to the fact, okay maybe I am not crazy, there are other people who feel like I do.

Which meds were you given to ask about? And which one are you trying? I tried Cymbalta both for the FMS and depression but it didn't work.
First Kidney Transpant--02/26/96-MCG-Augusta, GA
Second Kidney Transplant--05/06/04-Emory-Atlanta, GA

I can do all things through Christ who strengthens me.
Steve D
Member
Username: Steve_d

Post Number: 12
Registered: 10-2009
Posted on Wednesday, November 11, 2009 - 06:06 pm:   Edit Post Delete Post Print Post

Prednisone and cyclosporine are toxic to me. I only take myfortic and prograf and thus far
have had little to no side effects, I hope to be pitching next season.

Both times I was on prednisone I had to jump off after 5 - 6 days.

I was suicidal and homicidal and just a real pain in the arse to be around. Sever swelling in parts I can't name also were happening to me.

Perhaps it is one of those drugs that are causing your pain, or the combos for that matter.

I notice when I sleep that I have to turn after a few hours but that is about it.

I also have only been doing this for less then 5 weeks so who knows what is in store for me?

I wish everyone well.

Steve
Kim
Member
Username: Kendassa

Post Number: 11
Registered: 12-2007
Posted on Wednesday, November 11, 2009 - 06:13 pm:   Edit Post Delete Post Print Post

Prednisone is a horrible drug, but due to all the problems I had with my first transplant my doctors are reluctant to take me off it. I am currently on 5mg a day. It has caused osteoarthritis as well as osteoporosis, to the extent I have lost an inch and a half of height at 35.

The only way they will consider trying to take me off it, would be multiple weekly trips to Atlanta, for bloodwork, and to biopsy the kidney a few times for the first few months to make sure it causes no problems. Atlanta is 4 hours from me, and it simply isn't in our budget with everything we have going on.
First Kidney Transpant--02/26/96-MCG-Augusta, GA
Second Kidney Transplant--05/06/04-Emory-Atlanta, GA

I can do all things through Christ who strengthens me.
kakarp
Member
Username: Kakarp

Post Number: 47
Registered: 02-2009
Posted on Wednesday, November 11, 2009 - 07:39 pm:   Edit Post Delete Post Print Post

The two meds were Lyrica or Neurontin. What I ended up with Gabapentin, a generic of Neurontin.

I take many meds for a few issues but as for my transplant.
I took Neoral (cyclosporine) for about 14 and a half years. But when nothing could be found that was causing all my pain and discomfort it was thought I might be suffering from drug toxicity because of all the years of harsh meds. I was changed to Rapamune but I had some awful side effects. I was then change to Prograf (Tacrolimus generic).

So on top of the Tacrolimus, 1.5 mg 3x daily there is:
Prednisone 10 mg every other day. (I’ve been taking Pred. Since transplant in 1994.
Furosemide 40 mg daily
Gabapentin generic of Neutontin100 mg 3x daily
Mycophenolate generic of Cellcept 250 mg 2x daily
Coated Aspirin 325 mg mon, wed, fri since transplant

Regards,
Kevin
Kidney Transplant 10.17.1994
Received from my daughter
Living in central Mass.
Kim
Member
Username: Kendassa

Post Number: 12
Registered: 12-2007
Posted on Wednesday, November 11, 2009 - 08:15 pm:   Edit Post Delete Post Print Post

I can't take Neurontin...

What I just recently started on was Savella and after my doctor assured me there were no potential known drug interactions with my other meds other than the Lopressor, I went and looked it up anyway :-) Better to be safe than sorry and I learned that my prilosec and elevate prograf levels in the blood never knew that.

And I just hit the 3rd day on the Savella, which surprisingly seems to work somewhat, as the weather is really bad today, and my dog could actually step on my leg without me knocking him off of me as a reflex reaction.

The major side affects most others I have spoken with were nausea, sweating and hot flashes, and acid reflux issues worsening, however I already have major problems with all of the above and they can't get too much worse for me.
First Kidney Transpant--02/26/96-MCG-Augusta, GA
Second Kidney Transplant--05/06/04-Emory-Atlanta, GA

I can do all things through Christ who strengthens me.
Dawn
Member
Username: Alpinesunset

Post Number: 18
Registered: 02-2007
Posted on Tuesday, November 24, 2009 - 03:10 am:   Edit Post Delete Post Print Post

I don't know if any of you are taking it but Lipitor ( 10 mg every day for 2 years for me) started giving quite a bit of joint and muscle pain and weakness. Especially the hands, wrists, shoulders. Sharp pains in my legs as well. I was cut back to 10 mg 3X a week and the symptoms have subsided. I thought i had arthritus or tendonitus or something. Very stiff in the morning. I felt very old for 38.
Kidney Transplant 9/25/08
Recieved kidney from my beautiful sister in law.

Life is Good
Dawn
Member
Username: Alpinesunset

Post Number: 19
Registered: 02-2007
Posted on Tuesday, November 24, 2009 - 03:13 am:   Edit Post Delete Post Print Post

I don't know if any of you are taking it but Lipitor ( 10 mg every day for 2 years for me) started giving quite a bit of joint and muscle pain and weakness. Especially the hands, wrists, shoulders. Sharp pains in my legs as well. I was cut back to 10 mg 3X a week and the symptoms have subsided. I thought i had arthritis or tendonitis or something. Very stiff in the morning. I felt very old for 38.
Kidney Transplant 9/25/08
Recieved kidney from my beautiful sister in law.

Life is Good
Happy2Bhere
Forum Leader
Username: Happy2bhere

Post Number: 3307
Registered: 02-2008
Posted on Tuesday, November 24, 2009 - 11:12 am:   Edit Post Delete Post Print Post

I'm sure my pains in the past were caused by my various meds but in this day and time, I'm almost sure my aches and pains are a result of my age, by golly.

Seriously though, I have felt my share of daily pain post transplant almost 19yrs ago.

....just a bit of humor in the middle of your thread, Katie and others.

God Bless

Ol' Bob
Texas Bob
http://www.cafepress.com/Happy2Bhere_2
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php
Deb
Member
Username: Deb

Post Number: 325
Registered: 06-2003
Posted on Tuesday, November 24, 2009 - 10:11 pm:   Edit Post Delete Post Print Post

I am with ay;; on the pain deal.
Bob, you are just too funny.
I get those leggie that people wear of course on their legs,I guess looks. I slip them over my pants over my knee-caps when I am at home to help the cold-stiffness and pain.

As for when it gets to the stabbing, twisting painful stuff that is when you need to pull out the heavy stuff like Vicodin but be careful that can get addicted and it dosen't solve the problem its only good for temporary use.
As for the shoulder, I haven't found anything to help them.

Also, I sometimes have to go get what I think its was a steroid shot in the knee-cap? It seems to help bring the swelling down a lot got them in my poor little be-hind too and between the big toe and the other toe beside it. I have no idea how that area got swollen, I just know I was in tears and something needed to be done ASAP?

Can ya'll take something for arthritis? I am only allowed Tylenol and Vicodin or the steriod shot.
I hope you find something that will work for you to help ease your pain.
Kidney transplant 6/22/2002
lildeb
Meagan
Forum Leader
Username: Newheart14

Post Number: 522
Registered: 01-2009
Posted on Wednesday, November 25, 2009 - 12:29 pm:   Edit Post Delete Post Print Post

Deb,
My centre says I can't take anti-inflammatories, just tylenol. Sometimes it works, sometimes not.

Dawn,
I take pravastatin (cholesterol med) and some mornings my calves are very sore. My back and knees are always sore too. I also get foot cramps in the night - not sure if that is the statins or not. I probably don't drink enough of water.
First Combined Heart-Liver Transplant
Performed at Toronto General Hospital, Toronto, Canada
February 14, 2008
http://www.facebook.com/people/Meagan-Casimir/1149907559
http://www.tgwhf.ca/sites/testyourlimits/
Yesterday is history, tomorrow is a mystery, today is a gift, that is why it is called the present.
CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 2788
Registered: 03-2008
Posted on Wednesday, November 25, 2009 - 01:06 pm:   Edit Post Delete Post Print Post

I also take pravistatin. No cramps for me. I believe you are right. Drink more water. In all actuality, I probably don't drink enough water once it cools off outside.
There are not too many things in life worth working my butt off for, but my health is one of them
Renee
Member
Username: Jrenee_shaw

Post Number: 1
Registered: 12-2009
Posted on Friday, December 25, 2009 - 10:41 pm:   Edit Post Delete Post Print Post

Hi,
I am three years post kidney transplant and just recently I am having really bad joint pains (back, knees, shoulders, hips), some days worse than others. I take Cellcept and Prograf and Prednisone. I am diabetic and still on insulin, Novolog and Lantus. I also take a generic of Zocor and Norvasc for high blood and cholestrol. I take Lexapro just to stay in control mentally and have to take two Lasix just to keep the swelling down in my legs and feet, then I have little control of my urination, wearing pads to avoid embarrassment.. Pretty much, I do not know this new body at all. Everything has changed. I was extremely blessed to receive kidney from daughter, but sometimes I feel guilty for receiving kidney. I am able to do so little now. I am 62 years old and use to be so active. I know that I am older now, but sometimes my body feels like it is 100 years old.
Can anyone tell me why the Prograf is to be taken alone at 8am and 8pm. I was told it was because of some type research? Is it in my mind or do I really hurt more when I separate the Prograf from other meds?
I, too, have pain meds, but only take them when I cannot take pain any longer. I am afraid of becoming hooked on them. Will there ever be a time when we will be free of so many medicines. My hair is different on the side of transplant and I have to shave mustache and beard before going out. Anyone know good hair removal for face? Razors are killing me, so many cuts. I can no longer walk for long distances or stand for a long time and when I sit, I get up with popping knees and sometimes need assistance. I understand that I may have to live with this, but I would like some explanations. GOD BLESS ALL !!!
Meagan
Forum Leader
Username: Newheart14

Post Number: 616
Registered: 01-2009
Posted on Friday, December 25, 2009 - 11:43 pm:   Edit Post Delete Post Print Post

Welcome Renee,

So sorry you are having a rough time. There are some people on the site who have similar joint problems and I am sure they will come along soon to help you out. I am currently having problems with my leg due to a herniated disk so I can identify with your pain. We are not sure yet what caused it. Like you, I am trying to avoid painkillers because of fear becoming hooked. But I was told that as long as I am experiencing pain I will not become addicted. However, I still tend to use them sparingly.

I am also a diabetic like you and take Novolin NPH and Toronto insulin. This was brought on by the prednisone.

The reason you take your prograf 12 hours apart is because that is how long it lasts in your system and must be taken regularly in that 12 hour time period for efficacy. I can’t tell you whether you hurt more because of the prograf. I would be interested to know that myself.

The facial hair is probably due to the prednisone. How much do you take? I was down to 2.5 mg but they have increased mine drastically for 2 weeks to help with my herniated disk problem.

As for popping knees, this may be due to age or wear and tear. My husband has bad knees and his pop. He needs knee replacements but is waiting a while. Then again, there may be other reasons for your knee problems. Each one of us is different. What does your doctor say?

You should not feel guilty about accepting a kidney from your daughter. If you did not accept it, you would not be here to enjoy being with your daughter and other family members. We all feel guilty when we receive our organs but we have to accept that it's God's plan and it is a precious gift.

On another note, you may want to post your introduction on our Transplant Chat – Introduce Yourself Forum:

http://www.transplantbuddies.org/tbx/messages/15/15.html?1261786629

That way more people can pick up on your story and come up with some more help for you.

Just a little tip - in order for our members to adequately communicate with you, I have a suggestion for you. When you click on Edit profile in the light blue box up on the left in our forums you can add some information to your Signature for others to see. It helps us to know what your illness/transplant, etc. is.

After clicking on Edit Profile type in your username and password. When your page opens up scroll down where it says signature and type away. Click save

There are many other options to explore on Edit Profile.

I hope you enjoy your stay at Transplantbuddies and look forward to hearing from you again.

Take care
Meagan
First Combined Heart-Liver Transplant
Performed at Toronto General Hospital, Toronto, Canada
February 14, 2008
http://www.facebook.com/people/Meagan-Casimir/1149907559
http://www.tgwhf.ca/sites/testyourlimits/
Yesterday is history, tomorrow is a mystery, today is a gift, that is why it is called the present.
Orange County Ca
Member
Username: Orange_county_ca

Post Number: 33
Registered: 06-2008
Posted on Saturday, December 26, 2009 - 06:46 pm:   Edit Post Delete Post Print Post

I know what you mean about wishing you had stayed on dialysis. I've had periods where I wondered the same but fortunately we've found ways out of the problems.

If I were you I would spend the money to have a complete work-up of your whole situation. I guess that means a complete physical but centering on your particular problems. I would do this at a teaching hospital near you. I, for instance, would go to the University of California at Irvine or Los Angeles. You may have to put out of pocket money for this but one of two things will happen. They'll be able to help or they won't - in which case you'll know you're doing all you can and have left no stone un-turned.
CAPD 1.25 years
Transplant 4.5 years
Hemodialysis 8 years
Transplant 3 and counting
Teresa
Member
Username: Skyetazz

Post Number: 2
Registered: 03-2008
Posted on Sunday, December 27, 2009 - 01:25 pm:   Edit Post Delete Post Print Post

The answer to most of the above stated problems is SAM-e - it is an amino acid. Consult your doctor about taking it first. It got rid of my joint pain, fibromyalgia, depression, various other problems I suffered. TALK to your doctor first! We all have different medication regimes!}}
drhiii
Member
Username: Drhiii

Post Number: 5
Registered: 06-2008
Posted on Monday, December 28, 2009 - 06:30 am:   Edit Post Delete Post Print Post

Oh boy. I just came across this thread and.... well.... my wife is many years out as a liver transplant. We have extensive experience in all these areas. Joint pains, osteoarthritis as a result of prednisone, has led to two total shoulder, two total hip, one total knee replacement, fibromylagia symptoms, you name it. We've learned a great deal.

Is late so will hold off throwing out a body of information, but I would gather folks would like to hear what we have learned, how we have dealt with all this and much more?

Note that I am VERY cautious about offering information, and tell people to research, discuss with your transplant team and doctors, etc. We personally have had to just plow forward and solve many things on our own because the medical community often wants to focus on one thing. Very few doctors will think creatively and widely. But that has to be balanced with research and common sense.

Ok, now that I have expended a lot of verbiage on that... will come back in a day or two and offer more if anyone wants to hear.

Top of the list would be to have your Vitamin D levels (D3) added to your labs. Imperative to learn where your D level are.

Note also that steroids, like prednisone, crush the adrenal glands and imbalance thyroid function. For starters. In addition to tearing apart connective tissue leading to arthritis. Fibromylagia is often misdiagnosed due to low Vitamin D. Now, before anyone runs out and starts slamming over the counter D, too much can be toxic. Which is why this needs to be monitored and understood. Also, dosing with D, over the counter or medical grade D can switch off the body's normal D production, leading to a chain reaction of crummy things. A lot to explain here. This is just a start. But I would without question, given the pain theme within this thread, have one's D levels checked. Start there.

More later if anyone wants to hear....
Meagan
Forum Leader
Username: Newheart14

Post Number: 639
Registered: 01-2009
Posted on Monday, December 28, 2009 - 12:11 pm:   Edit Post Delete Post Print Post

Hi Drhiii,

Your wife has been through so much – far too much for one person to have to deal with. I do wish both of you well.

I agree with you that we have to be cautious about offering information and also how much we research on the web. I think it is a good thing to educate ourselves so we can better take care ourselves. However, we should all exercise good sense and caution when we read and not frighten ourselves.

I am always up for any type of information I can get. From the time I found out I was sick, I researched and researched. At that time, 1991, there was not too much I could find on cardiomyopathy, my disease, and any books I found basically said you should just go home and clean out your papers and basically wait to die.

With the age of computers, came a world of knowledge, so I started researching about my disease. It became sort of an obsession and I printed out everything I found. I had stacks and stacks of papers. Pretty soon, I realized I was just scaring myself, and threw out everything I printed ... lol.

Why I just said all that was because I want to emphasize to people that what you read on the net, you should take with a pinch of salt and not let it scare the heeby jeebies out of you. If it is going to scare you, then don’t read it.

Having said all that, I would like to draw on your world of knowledge of osteoarthritis, and joint replacements. My husband suffers with osteoarthritis and has two bad knees and his back is now bothering him also. He has had two arthroscopic surgeries this year but the right knee definitely needs replacing. He is allergic to regular steroids, but he is now on a non-steroidal anti-inflammatories. His surgeon has said that once Nick, my hubby, can’t take the pain, he knows he will be called for surgery. Our family doctor, on the other hand, says she would prefer he wait as they only last ten or so years. In addition, he has 100% heart blockage which makes surgery a scary thing. But he is very stable and they are keeping a watchful eye on the blockage. So things are good with that at the moment.

Currently I am dealing with a herniated disk and have been taking huge doses of prednisone, more so than the normal 2.5 mg I take every day. It has really helped me but, fortunately or unfortunately, my dosage is now back down to 2.5 and I am really noticing that the pain is coming back. I am also on painkillers but I use them very sparingly. I was on oxycodone in the early weeks but they did not agree with me. They have given me a painkiller called tramacet which is not supposed to upset your stomach too much, but I still use those very sparingly. I was wondering if you had come across anything on this in your research? All we have been able to find is that it takes a very long time to heal, 10% will require surgery, and various other treatments. I have an amazing Rhuematologist in Toronto looking after me. I see him again next week.

I would just like to add, that you are a special person for taking such good care of your wife. None of us who are waiting, or who have been transplanted, can go through such an ordeal without having loving caretakers by our sides. I commend you for that. Much like you, my husband has been my rock for the last 19 years of illness.

If you have read all this, bless you. Pardon me for being so long-winded.
First Combined Heart-Liver Transplant
Performed at Toronto General Hospital, Toronto, Canada
February 14, 2008
http://www.facebook.com/people/Meagan-Casimir/1149907559
http://www.tgwhf.ca/sites/testyourlimits/
Yesterday is history, tomorrow is a mystery, today is a gift, that is why it is called the present.
drhiii
Member
Username: Drhiii

Post Number: 6
Registered: 06-2008
Posted on Monday, December 28, 2009 - 05:36 pm:   Edit Post Delete Post Print Post

Hello Meagan,

Ya, we know and continue to learn of folks who had had to endure a great deal. What you describe of you and your husband's ordeals is no exception.

Oh boy... joint replacements. Yup, we have had a gob of experience with this. Given that you and your husband are obviously careful with information, I'll launch with the first piece of experience.

Don't wait.

We did. It was not worth it. We were both extremely conflicted because of her liver transplant, but the pain was, well, constant. That is the standard and correct answer that ortho docs give too... that pain is the indicator of surgery.

But, we learned, why wait? One thing that is for sure is that the chances of a compromised body improving over time is iffy. The body's ability to tolerate surgery over time has a better chance of diminishing, especially if there are underlying other conditions. And so on. The ability to recover in a younger person is much better tolerated than in someone who waits. That is basic logic.

Ultimately, almost everyone we have talked to, and we ourselves say, once a total replacement surgery is performed, all but one person we have ever talked to said they can't believe they waited.

One myth, and I have learned it is a bit of a myth, is that appliances last 10 years. The technology has changed so drastically, that this is not true anymore. Besides, it depends on the person's level of activity anyway. If someone is running marathons or very active, this might be truer. But, for people who have been reasonably sedentary to begin with, and that the chances they will start running marathons or something similar, the chances that an appliance wears out in 10 years, with today's improvements, is really thin. We have discussed this with several ortho docs and they concur, that time has improved all this.

In addition, if an appliance does appear to wear out, the replacement 'parts' are far easier to perform later, anyway. One is not replacing the entire appliance, just the sheafs within the appliance, and those are far better tolerated via surgery anyway.

Personally, after what my wife and I have endured, which includes 5 total joint replacements, no way would we wait. One has to go through recovery, and the physical therapy is VITAL by the way. My wife has done far better when physical therapy was very active. Because of insurance adventures down here, some surgeries have gone better than others. The PT part is imperative, and outcomes far better, when a recipient does the work required over the course of a month of two. A physical therapist is worth their weight in gold.

Now that I have babbled long enough, let me add one additional thing to this post. Vitamin D vitamin D vitamin D. Imperative to find out where those levels are. Especially when people live in climates with less sun, or who are less active. Even then, learning these levels can mean a lot of different things. Study of what modern medical science is assigning to Vitamin D has grown significantly in the last two-three years. Only means more doctors are paying attention to it. But people who are deficient in Vitamin D can derive so much more from, why this might be. Formation of bones and basic bone and joint health is just part of the indicator. Vitamin D deficiency can indicate other problems, like hypothyroidism which would be good to know. Low D can magnify a series of problems, like towards FBD (female breast disease), fibromylagia, lupus and so on are often misdiagnosed due to low Vitamin D levels.

I could go on. Main thing is... I would absolutely have my D levels checked in labs. What appears to happen is so many of these meds that transplant recipients must take, and their related med protocols, may (operative word is *may*) leech vital nutrients from the body. Vitamin D and mineral deficiencies are at the top of my list, from what we have learned. Not just anecdotally, but through bi-monthly labs that show to us, many of these levels.

And, from seeing significant improvements in overall health responses when these and other protocols are addressed. I could really launch into some things, many things actually, that we have learned through understanding diet/nutritional deficiencies and where they have been shored up. Vitamin D is at the top of the list. But we have gone headlong into making sure other things are supported too, not the least of which being Calcium/Magnesium/boron, then tending to adrenal support (we have acquired a terrific protocol for this), and we have been working in an iodine protocol that has also been terrific... Plus, we are working on heavy metal toxicity as well, and this has born fruit too. Plus, we have worked with a balance of Cal/Mag/boron/silca/strontium/Vitamin C to promote bone and joint health.

One recent story was over the last many months, my wife was experiencing increasing joint and overall pain, to the point where her first hip replacement was causing problems. To where a series of doctor visits was beginning to suggest there was a problem with the replacement, which began a run up to surgery. It was a race against time, but I reintroduced a liquid mineral protocol (Concentrace was a main thing in this, plus additional Magnesium and boron), and by the time we made it to a coming to Jesus appt with the ortho doc, he looked at all the MRIs and Xrays and said "I can't find anything structurally wrong" to which my wife announced she felt 100 times better since it all started, and we proceeded to detail, why. He took a lot of notes and ultimately said he was amazed that we had put together a protocol that appears to have reorchestrated and overcome a mineral imbalance, that led to a complete turnaround in a couple of months. It doesn't mean she is out of any woods as it is a constant work in progress, but I am a big one for really studying nutritional/mineral deficiencies. Where our western diets have really created a deleterious effect of people. I have seen our approach to this have dramatic turnarounds in other people, not the least of which are my 80+ year parents, who were really sliding in the last year, but we placed a couple of simple protocols in front of them, and talk about a turnaround! Leg and muscle cramps, gone. The have both returned to motoring around like 20 year olds.

Anyway.... Supplementing with a liquid minerals alone can restore what is almost certainly a mineral deficiency that we have acquired with our goofy western diets, for starters. I could as you can see, really wax on about a lot of these things.

But we've had to plow through so much, and today, when the wheels have come off of my wife's future more times than I could say, she is vital, productive, sells Avon and Mary Kay, and has essentially faced impossible scenarios more than a few times, and we hunker down and figure stuff out. We also know there is the 'beer truck' scenario... where I, or she, could get hit by a beer truck at any moment, and life changes.

If surgery is the correct option, and a patient is told they can medically tolerate it, why wait, is my opinion. A strong one too. I know personal physicians need to be heeded. But they sometimes need to be 'retrained' too. Often times, it requires imagination and tenacity to push past convention. Had we followed conventional protocol 18 years ago, well, the outcome would have been much different, and not good. I tend to be very aggressive in some things. And an old softie in others. Gotta find that balance, and that gravity changes every day.

Oh, as if I haven't waxed on enough... I know the need for prednisone is there, and doctors prescribe it. But I would do everything within my power to NOT take it. It is a very, very destructive thing over time. It's affect on bone and connective tissue (cartiledge) is well documented. My wife is a poster child for what can happen when left on prednisone for three years. Devestating. She developed avascular necrosis which ripped apart her shoulders and hips, and osteo in her knees and ankle. I know it is likely a tough sell to someone in pain. But, I would really look into mineral deficiencies, Vitamin D levels, and apply a lot of attention in this area. Just my $0.04.

Better ring off. Have typed a storm. Ask more. We have a lot to contribute in a lot of areas. I am especially vocal when I see posts that are so heavily slanted to medical answers. There are supporting ideas and protocols that can have major benefit, that are not medical, but nutritional in nature. Trust me, I was not this way years ago. That everything is solved by eating some exotic food or supplement. But we have overcome some seriously bad situations but weighing medical science and opinion with an understanding of deficiencies and imbalances.

regards, drh

By the way, I love Toronto. Beautiful place. Wonderful people. A great place....
drhiii
Member
Username: Drhiii

Post Number: 10
Registered: 06-2008
Posted on Tuesday, December 29, 2009 - 11:48 pm:   Edit Post Delete Post Print Post

Ops, did I overwhelm with too much info?
Meagan
Forum Leader
Username: Newheart14

Post Number: 668
Registered: 01-2009
Posted on Wednesday, December 30, 2009 - 12:34 am:   Edit Post Delete Post Print Post

Hi drhiii,

Thanks for the info. I agree that the replacement should be done as my hubby is in constant pain. He is getting various stories everywhere. His Ortho guy said when you can't take the pain anymore call me, his family doctor says don't get it too soon because they only last 10 years, I say, "But you have a 100% heart blockage that is currently stable, and you aren't getting any younger, why do you want to keep suffering?".

I am happy to read that the 10 year life of the appliance is a myth. I will mention this to him, and get his doctor to update her knowledge. I also did not know that replacing parts of the knee replacement was a possibility.

His mother who is 90 years old is going for her second hip replacement. We can't believe it. Her doctor is trying to discourage her, but she wants it. She has also had two knee replacements. This woman is one tough cookie. One of her knee replacements was done under local anesthesia!

Vitamin D, calcium and magnesium are on many of our transplant recipients' medication lists. We are also told to make sure we get a bone density scan every year.

I agree with you that we sometimes have to push doctors. If I had not pushed my cardiologist to send me to Toronto for heart evaluation, I would not be sitting here today. I make a point of staying up-to-date on every part of my condition and actually speak my mind to health professionals. I was recently hospitalized and the ER doctor was very pleased that I was well-informed about my meds, and condition. They were able to order the appropriate tests to see what was going on. My primary care for my transplant comes from the amazing doctors in Toronto who saved my life. They are the ones I listen to - the others I question and sometimes have to tell them what they are supposed to do in regards to tests, etc. When you go through an illness that potentially could have killed you, you don't stay quiet.

Regarding your take on prednisone, I agree. But ironically this is what is saving me at the moment. The Rhuematalogist recommended a 10 day therapy of mega doses of prednisone. It helped ease the pain. However, I am back down to my 2.5 mg maintenance dose required for the transplant, and the pain has returned. So I am just toughing it out so I don't add to my other problems. I see the Specialist again on the 8th and I am very interested as to what he is going to recommend next.

I know a lot of people believe in homeopathic and other such types of remedies. I tend to stay away from them because of the nature of my condition and I really trust my amazing doctors in Toronto. If they were to give me the go-ahead to take some alternatives, or acupuncture, or the like, I would do it. But these people saved my life and are continuing to do it. I trust them completely.

You are right, Toronto is a beautiful place with lots to do. The drivers are a bit nuts and like to beep their horns a lot - this is why we live in a small town in the country and just visit Toronto when we need to.

Thank you for the information. I will pass on what you said about the partial replacements in joint replacements to my husband. The problem with his surgery is that he is my caregiver and, to date, I have not given the poor man a chance to get his own poor body fixed as he is too busy taking care of me. I hope my docs change all this so he can have some pain-free living.

Incidentally, don't worry about too much info - too much info is never enough.

All the best to you and your wife,
Meagan
First Combined Heart-Liver Transplant
Performed at Toronto General Hospital, Toronto, Canada
February 14, 2008
http://www.facebook.com/people/Meagan-Casimir/1149907559
http://www.tgwhf.ca/sites/testyourlimits/
Yesterday is history, tomorrow is a mystery, today is a gift, that is why it is called the present.
drhiii
Member
Username: Drhiii

Post Number: 11
Registered: 06-2008
Posted on Wednesday, December 30, 2009 - 07:13 am:   Edit Post Delete Post Print Post

Hi Meagan,

What is all basically means is there are tradeoffs at every turn. I've pushed really hard to for instance, have my sweetie wean off of a med at any opportunity. It ain't at all easy. But the less is more thing is what we aspire to. And of course, every person is different. We certainly understand that.

Completely understand the hesitation towards alternative or homeopathic methods too. We really had no choice as some of the challenges were handed off to specialists who really wanted to 'specialize', and on several instances, my sweetie was just not being helped. So me being me, I am a research tool. Much, much learned. Like towards nerve damage. Or bone health. Or kidney maintenance. And so on...

As far as the joint replacement, ya, unless someone cannot tolerate such a thing, it just makes little sense to wait. IMO. We did, and of the many people we've engaged with on things like replacements, all but one said they regretted waiting. I think it makes more sense to attack it while one can better tolerate it vs. waiting when the body has a few more miles on it. Am sure you folks will make the right decision.

Will say tho... the 10 year wearing out argument is not one that I feel is a viable one. If one ever does, the entire appliance is not replaced. Just the surface material. Once the appliance is into place, it doesn't make much sense to replace the whole thing, especially when the graft has bound to bone. We were relieved to learn this early on, with what has so far ended up as 5 total joint replacements.

Oh, in addition to the Cal/Mag/D supplements, I'd look into silca and strontium. Vital supplements towards the health and maintenance of bone and connective tissue.

Anywayz... I could wax on. But am sure folks are mindful to do their own research. Gobs of it out there...

regards, david
kakarp
Member
Username: Kakarp

Post Number: 57
Registered: 02-2009
Posted on Friday, January 01, 2010 - 11:37 am:   Edit Post Delete Post Print Post

TransplantHELL and everyone else.

As posted in my early thread I’m dealing with a lot of pain and I was willing to deal with it as long as the kidney was working OK. I believe that post was early November but the pain and discomfort has gotten MUCH worse. I don’t know if it is the cold weather or if what ever is causing the pain is just progressing. Getting up in the AM is now a hugh problem. I know before I even try just how bad it will be. When I’m laying on the floor playing with the boys (our two dogs) I have to crawl over to a table or chair to help myself up. I am now very interested in taking a pain pill. Not all the time just when needed. My transplant Dr. has just increased my Cellcept and is cutting my Prednisone in half after 15 plus years. I’ll now take 2.5 mg every other day to see if it helps. As time progresses I’ll try to come back to update my results.

Kevin
Kidney Transplant 10.17.1994
Received from my daughter
Living in central Mass.
Deb
Member
Username: Deb

Post Number: 356
Registered: 06-2003
Posted on Friday, January 01, 2010 - 11:35 pm:   Edit Post Delete Post Print Post

Meagan, sorry you cannot take any anti-flammatory meds, I am not sure since I had the kidney transplant if I can take it anymore being you mention it? I also take only Tylenol and Vicodin only when in tears. Yoga helps ease my mind sometimes when I am in pain, hey whatever I think may help. All you can do is check into it and try it and see if yoga can help somewhat.
I also try to be aware of online resources and try to look under area such as: gov or edu for reliable resources as well.

Kevin, I have stiffness in my knee caps along with pain. I found some some blue elastic knee supports by Assured at the Dollar Store. I wear them under my pant legs, but do not wear them 24hrs and make sure they are right size so they do not cut circulation. It really helps with my knee caps to ease the stiffness.
Yes, I think the cold, damp weather dosen't help either.
Kidney transplant 6/22/2002
lildeb
Meagan
Forum Leader
Username: Newheart14

Post Number: 686
Registered: 01-2009
Posted on Saturday, January 02, 2010 - 12:16 am:   Edit Post Delete Post Print Post

Deb,

The Rhuematalogist put me on mega doses of prednisone for 10 days which eased the pain a lot. The pain meds did not agree with me. I had just been reduced to 2.5 mg prednisone after my last heart biopsy which thankfully did not show rejection. I was a little skeptical, but the doctor was right. Now, I am back down to usual dose of 2.5 mg. Although the pain is still there, it is bearable and they have given me a different type of painkiller which I am taking sparingly. We are interested to see what the Specialist has to say next week when I see him.

I should try that yoga out then as you suggest. But isn't that wear you bend yourself like a pretzel? Unfortunately, I can't do too much with the leg right now, but perhaps that might be something I can try in the future. Thanks so much for the suggestion.

I am sorry for yoyur knee pain. I really understand what it's like as my poor husband has two bad knees and one needs replacing badly but he is procrastinating getting it done. The surgeon said when you can't take the pain anymore call me. :-)

I hope you had a wonderful holiday and will have a healthy and painfree 2010.

Meagan.
First Combined Heart-Liver Transplant
Performed at Toronto General Hospital, Toronto, Canada
February 14, 2008
My very long story, read at your own risk - http://www.transplantbuddies.org/tbx/messages/28633/110367.html?1261933277
My amazing doctor, Dr. Ross will ski to the North Pole in 2010 - http://www.tgwhf.ca/sites/testyourlimits/
http://www.facebook.com/people/Meagan-Casimir/1149907559
Yesterday is history, tomorrow is a mystery, today is a gift, that is why it is called the present.
Hostess Rise'
Forum Leader
Username: Risa

Post Number: 12462
Registered: 05-2003
Posted on Thursday, February 25, 2010 - 11:50 am:   Edit Post Delete Post Print Post

Bumping to the top
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

If you have any questions about this website contact Transplantbuddies@gmail.com

FaceBook
http://txbuddies.com

Jodi
Member
Username: Smiley95

Post Number: 10
Registered: 09-2009
Posted on Friday, February 26, 2010 - 01:01 am:   Edit Post Delete Post Print Post

Thank you for bumping. There is alot of great information in here that I'm going to look into.

Jodi
kakarp
Member
Username: Kakarp

Post Number: 64
Registered: 02-2009
Posted on Monday, March 01, 2010 - 09:56 am:   Edit Post Delete Post Print Post

This is NOT transplant related but some of us may need to consider this. I have been having awful pain for years that has steadily gotten really bad to the point that I am now on SS, need a cane, have pain pills when needed. I have really bad leg seizures that feel like I’m being electrocuted, can’t stand or walk very far, have trouble carrying anything over a few pounds. There are many other symptoms but I want to get to my point.

If any of you wear dentures and use an adhesive you may want to look into this.
Because of a fear of Dentists that I had when young I now wear an upper plate and to make myself feel more comfortable I use adhesive. My daughter (and my donor) works for a dentist and she called my at the end of their last meeting to tell me about a study that has just come out. If you have used adhesive for years as I have you may be suffering from Zinc poisoning. I do have pretty much all the symptoms. During my monthly labs today I’m going to have a zinc test done as well. I’m grabbing at straws but no one has been able to find anything else. It has been thought to be drug toxicity from all the years of transplant meds and or fibromyalgia. Yes I have had my meds changed and or increased and decreased but it did not help.

This may be something for some of us to look into.

Kevin
Kidney Transplant 10.17.1994
Received from my daughter
Living in central Mass.
Rita
Forum Leader
Username: Rita

Post Number: 365
Registered: 06-2003
Posted on Wednesday, August 18, 2010 - 02:50 pm:   Edit Post Delete Post Print Post

I am not sure if this will be helpful to anyone but here goes. I was in pain so much so that I thought I had to stop working. I was distressed because we all carry our internal emotions about being sick and the story I tell myself in my head ( we all have our own stories we tell ourselves) If I can work I am well. Not exactly logical but it is my story.
Any way I went to my doctor and told him all the pain I was in--you know how you have to stop and think if you can really do the activity you have in your head because mind and body dont always agree when it comes to movement when in pain or illness. I was very distressed and he put me on allopurinol and it helped within a short amount of time I was back to myself and not in pain. I am not suggesting that this is the magic pill, and this drug like all our drugs have to be carefully watch because allopurinol interacts will immuran. Labs need to be taken etc. Levels of immuran had to changed etc. I can tell you that it has worked for me, just putting this out there in case you would like to discuss this with you doctor.
Rita
Kidney Transplant 9/95
New York Hospital, NY
Dr. Wang
Fern
Member
Username: Fern

Post Number: 1
Registered: 01-2014
Posted on Friday, January 24, 2014 - 02:15 am:   Edit Post Delete Post Print Post

I just wanted to add our experience to this thread. Our teen daughter is on Rapamune for cancer - and she developed horrible muscle spasms and join problems. Like many in this thread - painful to sleep, lie in bed, very debilitating. But we really want to be on the drug because there is a perfect DNA match to the cancer that she had.

Well, we tried Sam-e as recommended by Teresa - and the same day - dramatic improvement. Like night and day. Thank you so much Teresa!

She tried 400 mg and then we read elsewhere that sometimes that dose causes headache - and many can get by with less.

Well - tremendous blessing - the 200 mg pill once a day is all she needs.

Sam-e is S-adenosylmethionine. Always check with your doctor first - but it is alternative health and available at some pharmacies, Amazon, and supplement / vitamin stores. Thanks everyone for sharing - it really helped us!
Hostess Risé
Board Administrator
Username: Rise

Post Number: 17983
Registered: 05-2003


Posted on Friday, January 24, 2014 - 01:07 pm:   Edit Post Delete Post Print Post

Welcome Fern :-)
I am glad that you spoke to your daughter's doctor and she cleared Sam-e for use. I have heard of it mentioned but know nothing about it.

I did not see in your post that your daughter is an organ recipient-
Has she had a bone marrow transplant?

I am curious as to what brought you to this website?

Thank you for sharing. I wish you and your daughter the best.

Whenever I feel stiff or experience any pain, I have my magnesium levels checked as transplant drugs deplete magnesium from the body.

Many people without an organ transplant are deficient in magnesium.
CF- dx at 2yrs. 2nd double lung tx-05 JMH
My Photos on Transplant Friends

Facebook-TransplantBuddiesfriends

Twitter-transplantbuds

Contact: transplantbuddies@gmail.com
Robin
Member
Username: Rvetrady

Post Number: 1
Registered: 06-2016
Posted on Sunday, June 05, 2016 - 05:19 pm:   Edit Post Delete Post Print Post

My wife got her Kidney Transplant on April 13th 2016 and in under a week was diagnosed with AMR, which needed her to undergo 14 sessions of Plasmapheresis to take away the antibodies which were rejecting the kidney. It's been 4 weeks now since the kidney functions have become normal again and she has been off dialysis, so the transplant team seems to have got the AMR under control.
Approximately 17 days ago, she developed this nagging headache along with elevated BP in the range of 140/95, which when we informed the transplant team, they said was a good BP to have for post transplant patients and so was the headache. A couple more days later, the headache started becoming unbearable leading to no sleep at night and nausea and vomiting, which lead us back to the ER and hospitalization.
While at the hospital, the headache got worse and progressed to the eye (blood red eyes and pain), and to her shoulders and back. While being treated for AMR she was given one and a half dose of Eculizumab, so while she was hospitalized, the doctors wanted to rule out Meningitis first (which they did, after 4 attempts at Lumbar Punch). A lot of other neuro tests later, they concluded the issue was not neural. They finally felt the high BP must be causing the headaches and put her on BP medications to keep it around 130/80, which she is having every 6 hours now. Almost 12 days later, the headache and eye pain is controlled (or can be said to have practically gone), but the shoulder and muscle pain on the arm just won't go away. Using lidocaine patch helps with the pain and so they finally sent us home with BP, Oxcy, Tylenol and 20 days supplies of lidocaine patches.
It's been three days now we are back home and the pain on her shoulders, arm and back keep coming back all the time (every morning in the sleep). The Oxcy and Tylenol seem to have no impact, the lidocaine patch seems to help but they can be kept on only for 12 hours and she has to be off it for the next 12 hours. So like yesterday she had it on from 12pm to 12am, and while it was on she felt good and was functional and without pain. But at 5:30 am she woke up with this terrible unbearable pain which just does not go away. The transplant doctors thought the pains probably due to IV Induced Arthritis or are side effects of Eculizumab. Her magnesium levels are low (1.4 mg/dL) as is her Vitamin D 1 (< 8.0 pg/mL). Reading others experience here, wondering if we should be focusing on these.

Add Your Message Here
Post:
Bold text Italics Underline Create a hyperlink Insert a clipart image

Username: Posting Information:
This is a private posting area. Only registered users and moderators may post messages here.
Password:
Options: Automatically activate URLs in message
Action:
Topics | Last Day | Last Week | Tree View | User List | Help/Instructions | Program Credits Administration
 
Contact Us
Established 2000 © TransplantBuddies.org