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ModernHEALTH
Member
Username: Modernhealth

Post Number: 14
Registered: 05-2010
Posted on Wednesday, June 09, 2010 - 07:22 pm:   Edit Post Delete Post Print Post

Novartis receives US FDA approval for Zortress® (everolimus) to prevent organ rejection in adult kidney transplant recipients

April 22, 2010 - The US Food and Drug Administration (FDA) has approved Zortress (everolimus) oral tablets for the prevention of organ rejection of kidney transplants in adult patients at low-to-moderate immunologic risk. Zortress is to be given in combination with reduced doses of the calcineurin inhibitor (CNI) cyclosporine, as well as basiliximab and corticosteroids.

Full article on the Novartis website.
http://www.novartis.com/newsroom/media-releases/en/2010/1406625.shtml
Jeff
ModernHEALTH Pharmacy
http://www.modernhealthinc.com/transplant
ModernHEALTH
Member
Username: Modernhealth

Post Number: 17
Registered: 05-2010
Posted on Tuesday, June 15, 2010 - 11:49 am:   Edit Post Delete Post Print Post

Zortress (Everolimus) has been used for over six years outside of the USA. Have you been prescribed Zortress and if so, how has your experience been?
Jeff
ModernHEALTH, Pharmacy for Transplant Recipients
ModernHEALTH Transplant Pharmacy Services
Eskimo
Member
Username: Eskimo

Post Number: 3
Registered: 04-2011
Posted on Thursday, April 14, 2011 - 11:42 am:   Edit Post Delete Post Print Post

I'm a lung transplant patient that's been on Zortress for the last 6 months and I've been told that it will in my anti-rejection but also help my kidney's in the long run,
I started on a lower dose and since have increased (I'll keep dose level's to myself as everyone is different and what's good for me may not indicate what's good for someone else) also dose for Prograf has decreased, I'm all for longevity thanks
Thromboendarterectomy July 93
Right Lung Transplant Mar 98
Left Lung Transplant Feb 10
CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 4631
Registered: 03-2008
Posted on Thursday, April 14, 2011 - 12:41 pm:   Edit Post Delete Post Print Post

Eskimo, I think that everyone here realizes that the dosage depends on the individual. Good to know that prograf was decreased. I am on 2 mg of prograf 2 times a day and 2.5 mg of prednisone. No cellcept at all. (Took away due to low WBC) Welcome to Transplant Buddies!
There are not too many things in life worth working my butt off for, but my health is one of them

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bill s
Member
Username: Bill_s

Post Number: 115
Registered: 08-2011
Posted on Wednesday, July 17, 2013 - 09:45 pm:   Edit Post Delete Post Print Post

I've just started taking Zortress/Everolimus which has replaced Prograf/Tacrolimus in my kidney transplant regimen. If you have any experience (good, bad, etc.) please share them. I'm now taking 1.5 mgs Zortress and have completely stopped taking Prograf. My tx docs are shooting for a blood level of 3 - 5 and mine is at 3.7 (I weigh 180 lbs) with no side effects noticeable in the first 2 weeks. Zortress/Everolimus is a significant variant of Sirolimus so the efficacy and side effects should be different between these two medications. I'm still taking Cellcept and Prednisone as well.
LadyDi
Forum Leader
Username: Ladydi

Post Number: 2809
Registered: 03-2008
Posted on Friday, July 19, 2013 - 07:01 am:   Edit Post Delete Post Print Post

Interesting, Bill! How did they go about switching you over, and why?
Curious to know your thoughts.....
Kidney Donor to Husband 10/30/07
Forum Leader-Living Organ Donation
Barnes Jewish Hospital St. Louis, Mo

My Donation Story

Post Donation Things to consider

I walk slowly, but I never walk backward - Abraham Lincoln
bill s
Member
Username: Bill_s

Post Number: 117
Registered: 08-2011
Posted on Friday, July 19, 2013 - 01:29 pm:   Edit Post Delete Post Print Post

I have been constantly complaining to my TX docs about my apathy, fatigue, etc., and begging to reduce my med amounts. They know I have been seeing a psychiatrist and trying various stimulants and antidepressants (e.g. - ritalin, adderall,, prozac, zoloft, lexapro, citalopram and now I'm trying Provigil and Venlaxafine) trying to get back emotionally/physically to where I was the day before I got my transplant. They didn't tell me much but said they thought I was a good candidate for Zortress and that it would replace the Prograf so I went for it. Every time I see my TX docs I ask if we can reduce the Prednisone and CellCept. Let me know if there's any more info I can provide.
Hostess Risé
Board Administrator
Username: Rise

Post Number: 17789
Registered: 05-2003


Posted on Friday, July 19, 2013 - 04:59 pm:   Edit Post Delete Post Print Post

Hi Bill
Is it possible that your doctors only want to decrease or change one drug at a time?
CF- dx at 2yrs. 2nd double lung tx-05 JMH
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bill s
Member
Username: Bill_s

Post Number: 118
Registered: 08-2011
Posted on Friday, July 19, 2013 - 07:23 pm:   Edit Post Delete Post Print Post

Your question was especially interesting in view of the notes on difficult medical people. The TX team has not previously given me any instructions or information to help with my apathy/fatigue, etc., issues. They seem totally consumed with the health of the kidney. Thus, it was left to my devices to try to work my way out of this hole with the help of my nephrologist and psychiatrist. All med recommendations are sent to the TX team to ensure they are not hazardous to the kidney and my psychiatrist gets approval from my nephrologist for any drug before prescribing it. There is a distinct lack of knowledge about what to do about the side effects of the immunosuppressive drugs, as this site notes. The TX team will only change these meds if the side effects are something they understand is hazardous to the patient. However, I believe that the change to Zortress was due to my constant pleas to the TX team for a med reduction due to the effects on me. Incidentally, the plan to taper the Prograf down to zero (day 1,2,3 - 2 mg, day 4,5,6 - 1-1/2 mg, day 7,8,9 - 1 mg, day 7 - get blood test, adjust meds depending on results) was my suggestion. They were just going to have me take both meds at once with no taper until the Zortress level was satisfactory.
bill s
Member
Username: Bill_s

Post Number: 119
Registered: 08-2011
Posted on Friday, July 19, 2013 - 07:34 pm:   Edit Post Delete Post Print Post

Hi Hostess, as to your question about multiple drugs, it turns out that due to the uncertainty of the outcome in prescribing drugs to help with "mental" issues, combinations of drugs are often prescribed. I sense you, like me, find this not totally "sane" and so I started taking the Provigil about 7-10 days before starting the Venlaxafine in case some odd side effects might occur - no side effects so far and I have not yet started the Venlaxafine. I wrote in another post all the various drugs I have unsuccessfully tried.
Hostess Risé
Board Administrator
Username: Rise

Post Number: 17791
Registered: 05-2003


Posted on Saturday, July 20, 2013 - 10:03 am:   Edit Post Delete Post Print Post

Hi Bill
I have no knowledge of any of the drugs you have mentioned. When waiting for my second transplant,
I experienced horrible anxiety and tried several common drugs and nothing worked well for me so I went solo and found
believe it or not, wonderful success with energy medicine.

Thankfully, I learned the best techniques that were right for me.

In the hospital while I was on the ventilator they gave me Paxil and that worked really well or I thought it did. I was able to wean off Paxil as soon as I went home.

If you can learn energy medicine, I would start with learning
Emotional Freedom Technique
http://eftuniverse.com
CF- dx at 2yrs. 2nd double lung tx-05 JMH
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bill s
Member
Username: Bill_s

Post Number: 132
Registered: 08-2011
Posted on Wednesday, October 02, 2013 - 05:34 pm:   Edit Post Delete Post Print Post

This is an update on my experience with Zortress. My fatigue seems to be completely gone and now, when exercising, I feel the same as I did pre-transplant and I feel that my muscles are getting stronger. Oddly, I am a little more tired now and can easily fall asleep and have a nap while sitting in a chair especially after eating.
Unfortunately, I still have the apathy but I feel better that at least another of my problems seems to be resolved. I've been reading up on antidepressants and find that the literature indicates that antidepressants are no more effective than placebos in helping with the effects of mild to moderate depression problems. So, I've decided to stop taking Provigil and venlafaxine after my current test with them runs out in about 3 weeks. Provigil is supposed to help one stay awake but in my case it doesn't work.
I don't have any anxiety at all so energy medicines may not have any impact on me. I did get my transplant doctors to say that if I continue to do well, they would reduce my prednisone from 5 mg to 2.5 mg at my 3 year mark which is coming up in Feb 2014.
Diane L.
Member
Username: Diane_l

Post Number: 693
Registered: 12-2011


Posted on Friday, October 11, 2013 - 11:58 am:   Edit Post Delete Post Print Post

Hi Bill S.

I haven't posted for a very long time. I am 5 years post liver transplant in Nov.
Bill, do you know that you should taper off the venafaxine slowly. You could ask your Dr. how to do this safely. I would suggest starting with dropping the dose in half for a week or two, and then maybe start taking it every 2nd day, and then cut that dose in half, until you get yourself down to a low dose.
Best though to get directions from your Dr. I am not familiar with Provigil, but you may want to ask if it should be tapered down slowly.

I have done really well from the transplant itself, but I have had lots of problems with my medications.
Initially I was on mycophenolate and tacrolimus. My blood work was always good, but I started getting sicker and sicker and more and more fatigued last fall, and very severe tremors and headaches from the tacrolimus.

I was taken off of it in Jan this year, and put on Cyclosporin. The side effects stopped within 2 or 3 days, and I felt MUCH better.

But for the last 6 weeks I have been very very sick, with zero energy and I have lost 14 pounds in a month. I can barely look after myself. My creatinine levels suddenly spiked as well, as did my Cyclosporine trough levels. No one picked up on it.

I keep close tabs on my own labs, and guessed that it was toxic side effects from the Cyclosporine levels. After 3 calls to the Transplant Clinic, suddenly they were worried, and my dose has just this week been decreased from 125 mg twice a day, to 100 mg twice a day. Today, I actually feel slightly better.

This is the first time the clinic has dropped the ball, but I think part of it is due to a new nurse at the clinic that just doesn't yet have the experience. She has been very nice and I think was very sorry that she had not picked up on things before. Huge learning curve for her.

These medications are very powerful and very toxic. But unfortunately we have no choice and we do need be on something for life.

My surgery was sudden and urgent because of a viral infection, and I really knew nothing about Transplants before. Somehow i was under the impression that as we got better, the medications would be weaned down, and then we would be off them all together. But not so.

Good luck to all of you who are having problems with your medications. It is very interesting to hear about other people's problems with their meds.

Take care.

Diane
Diane Lewis
Liver Transplant
Vancouver General Hospital
November 20, 2008
bill s
Member
Username: Bill_s

Post Number: 133
Registered: 08-2011
Posted on Friday, October 11, 2013 - 02:28 pm:   Edit Post Delete Post Print Post

Hi Diane,
Thanks for the note and congrats on your 5 yr anniversary.  Your info on the venlafaxine is too late as I stopped taking it and Provigil as it had absolutely no effect on me. I didn't bother telling my psychiatrist as she has never worked with a crazy system like I have. I tapered them from 75 mgs Ven and 300 mgs Pro down to zero in 3 days, again with absolutely no detectable effects as of now, 7 days later.

I'm sorry you've been sick and losing weight in the past 6 weeks and that your medical team didn't follow up in a more timely manner. I know you have to be your own best advocate as I run into the same slip ups with my doctors. I'm surprised that you weren't advised to go to the nearest Emergency Room if you feel sick since a transplant is much more delicate/at risk than for most people. My transplant team told me that anytime I felt sick or even had a temp over about 100.5F to go to the ER (I've been to the ER about 7 times in the past 32 months).   I went last Wed with 102.4F thinking i had a bad cold but found it was pneumonia. They give you very good treatment when you warn them that you are a transplant patient.  After an IV of antibiotics they sent me on my way and now I'm getting better.

It's interesting to hear your reaction switching to cyclosporine and finally getting your dose adjusted properly. Is there a blood test for the cyclosporine level in the blood?   Are you now taking 200mg Cyc along with ?mg mycophenolate and ?mg Prednisone?  Based on your experience I will plead and beg my transplant team to convert me to Cyclosporine.  I'm now taking 1500mg mycophenolate, 1.5mg Zortress and 5mg Prednisone.  My transplant team says they may reduce my Prednisone down to 2.5mg at my 3 yr anniv in Feb 2014.  I'm still fighting dreary apathy and would like to get closer to my old 'normal'.

My docs and nurses are all very nice and make mistakes as most of us do.  I have really good advantage in that I am in email contact with many of my docs (nurses don't have email access for some reason) so that I can immediately make remarks or ask questions on any of my blood results (which are available on their Internet site about 2days after the blood draw) or ER visits or even to discuss a recent kidney transplant article I came across while surfing.

I echo your wishes of good luck to all who are having problems with your medications. It is very interesting to learn of other people's problems with their meds. 
Diane L.
Member
Username: Diane_l

Post Number: 696
Registered: 12-2011


Posted on Saturday, October 12, 2013 - 01:22 pm:   Edit Post Delete Post Print Post

Hi Bill,

So glad to hear that you had no problems coming off the Ven and the Pro. I am really trying to on the minimal number of drugs as possible as they are so powerful and there is a fine line between therapeutic results and
toxic results. And of course there are so many interactions between medications. And of course there are so many interactions between medications. But often we have little choice.

Sorry to hear that you have had a recent bout with pneumonia, but sounds as though you are on the mend. I have been very lucky in that department as.

I think that one of my biggest problems at the moment is my Family Dr. I am note sure if she is just not into caring for patients who have chronic health issues or if she is over her head with complex health problems.

I do not go very often, mainly just to have her renew my prescriptions. But I have been in 3 times since the beginning of Aug, all related to having toxic effects from the cyclosporine, but of course at that point I had no idea what was wrong. Each time she just says, " I have no idea what is going on, and I have no idea who to even call.....sorry Diane"? She gets paid to tell me that? But I really needed medical advice. She doesn't even pick up the phone to ask the Transplant clinic for guidance for her. This year she refused to order a bone density test for me, because she does not believe in Osteoporosis.

Because I have not had a fever, I have not gone into Emerg, but will in the future. I am not sure what it is like in the US but in Canada, it is hard enough even getting a GP in the first place, let alone changing from one Dr. to another in the same community. But somehow, I am going to have to.

I am sure we all have issues at some point with our meds. I also find it really interesting and helpful what happens with others and their medications.

I am taking mycophenolate (Cellcept 1,000 mg twice a day. I was also on Prograf 2.5 mg twice a day, but actually had problems with it right from the beginning and last year the problems really escalated. All of the problems with the Prograf stopped within 3 days, and I felt MUCH better on Cyclosporine which I started on in Jan of this year. This drug is hard on your kidneys, but my labs have always been great. Then in Aug my creatinine suddenly really spiked. Looking back some of the side effects that I am experiencing started earlier in the summer, I just didn't know what was happening. So a few days ago, I have been dropped down to 100mg twice a day. I have no idea how long it will take to feel better.

I was also on Prednisone right after my surgery, slowly tapering down to 5 mg. by my fourth month. And then I was able to stop it. My blood sugars were quite high. Mine were in the range of 13-16. I think our values are a little different in Canada. Here our normals range from 3-8, although 8 is on the high side. I required insulin, but once I was off the Prednisone, by blood sugars went back to normal, and I was able to stop insulin. I had been in a car accident 2 years before my surgery, and even at 5mg of Prednisone, by pain was totally controlled. That was the good thing for me. But over all, I am glad to be off of it, and also developed severe osteoporosis.

Are you experiencing side effects from being on Prednisone? Maybe your apathy? Fortunately you are on a small dose. I am sharing my medication journey because when things go wrong, I think it is really important to review our medications . I find it is very informative to hear about other's going through issues with their meds, and hearing what ended up working best for them.

Also, I feel really strongly that where we can we should keep track of our own labs because as you have already indicate, we have to be our main advocates. And I also agree that our TXP teams are only human. We probably all need to learn how to interpret our now labs at least at a basic level so that nothing gets missed.

Sounds like you are nearly 3 years out. What organ did you have transplanted Bill? good luck with your progress and hopefully being able to reduce your meds.

Great chatting with you Bill

Diane

Happy Thanksgiving to all of my fellow Canadians.
Diane Lewis
Liver Transplant
Vancouver General Hospital
November 20, 2008
bill s
Member
Username: Bill_s

Post Number: 134
Registered: 08-2011
Posted on Sunday, October 13, 2013 - 01:55 am:   Edit Post Delete Post Print Post

Hi Diane, i feel well, i did some light exercise and walked for 65 mins today with no problems.

I recd a kidney TX on Feb 15, 2011 at UCSF (55 miles north of where I live) and am being followed up by TX docs from UCSF who work part time at Kaiser Permanente, my HMO (UCSF has a contract from KP to do their kidney TXs and to follow up with these patients for a long, unspecified period of time). I now see these docs every 6 months which will change to 1 yr periods in Feb 2014. My GP is a KP nephrologist that I've been seeing for over 9 yrs now. The TX team specifies, and reviews the results of all medical tests to be performed by KP, all immunosuppressive drugs and review of all drugs the patient takes. I am able to send and receive emails with my doc and order/receive drugs in the mail.
I thought since you listed Vancouver General Hospital as your TX site, you went there for your TX care and was able to get reasonably good care.

I am sorry it is so difficult for you to get medical care but you will not get reasonable care unless you can find a liver specialist closer to where you live (if your TX Center cannot recommend one and you can't find one via the internet then you may continue to experience difficulties). How far are you from VGH?
You should go to the 'Our Organ Transplant Centers', and to 'Frustrated With Center ...' And read Sue's note - it might give you ideas to try in your area. For example, can you go to VGH and find a way to make a contract with a specialist, such that after a few visits, you can do most of your communications by phone and email?

I hope you are able to find some competent doctors in your area or reasonably close by. Good luck! Fortunately you seem to have a good support group where you are.
Regards, Bill
bill s
Member
Username: Bill_s

Post Number: 147
Registered: 08-2011
Posted on Wednesday, November 27, 2013 - 02:51 am:   Edit Post Delete Post Print Post

I talked to my TX team doctor by telephone today and he has reduced my Prednisone dosage to 2.5mgs/day with the possibility that they will reduce it to zero in the future. I've started taking 60mgs/day Ritalin for my apathy (7 days ago) but, so far, it has almost no effect except that my tongue started hurting as if was rubbing against my teeth and getting slightly chafed, and my rear hip muscles and front upper leg muscles are somewhat sore but only when I get up and move (absolutely no pain sitting or sleeping). One advantage of the Ritalin is that I don't fall asleep if I'm sitting in the afternoon, regardless of what I'm doing, as had been the case in the past.
bill s
Member
Username: Bill_s

Post Number: 150
Registered: 08-2011
Posted on Monday, January 20, 2014 - 01:15 am:   Edit Post Delete Post Print Post

My hip, ankle and leg muscles continue to ache and they have gotten worse since my last note. I am now down to 2.5mgs prednisone and have convinced my TX team to let me switch back to tacrolimus to make sure the aches are not due to the Zortress. I can still walk for 65 mins with minimal aching and the aching essentially stops when I'm sitting (except for some occasional muscle spasms). Otherwise, I feel pretty good and am coming up on my 3rd anniversary.

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