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
 

Rapamune Log Out | Topics | Register | Edit Profile

TransplantBuddies.org Forums » Medications - Dental - Skin » Rapamune « Previous Next »

  Thread Original Poster Last Poster Posts Pages Last Post
To those on Rapamune...edCarl01-02-12  05:08 pm
           

Author Message
Hostess Rise
Board Administrator
Username: Rise

Post Number: 13637
Registered: 05-2003
Posted on Monday, July 12, 2010 - 08:02 am:   Edit Post Delete Post Print Post

How many of you take Rapamune? What have been your experiences.

How long are you taking Rapamune for?
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Med. Dir. Lung Transplant/Pulmonary Hypertension Programs
Jackson Memorial Hospital

Si Pham MD, Professor of Surgery, Dir. of Thoracic Transplant & Artificial Heart Program-Miam Transplant Institute

Anas Hadeh MD, Cleveland Clinic, Weston, Florida
CF consultant- Critical Care and Sleep Medicine

Sharing Knowledge is an Invaluable Experience
Transplant Friends & Chat
Questions- Contact Hostess Rise'
Jack
Member
Username: Johnhollenbach56

Post Number: 146
Registered: 12-2009
Posted on Monday, July 12, 2010 - 08:14 am:   Edit Post Delete Post Print Post

I've been on Rapamune for about 2 years now. My doctors replaced several other immunosuppressants with it as it is ‘kinder to the kidneys’. So far so good.
Jack Hollenbach
jack_hollenbach@hotmail.com
Received double lung transplant August 2, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA

Live each day to your fullest, for it is a gift to be treasured
Jack
Forum Leader
Username: Johnhollenbach56

Post Number: 221
Registered: 12-2009
Posted on Thursday, August 12, 2010 - 08:20 am:   Edit Post Delete Post Print Post

Ok, an update on that last post I made here regarding me & Rapamune – I just completed my three year anniversary exam and doctor visit, the doctor upon seeing the list of my concerns (before doing a doctors visit write down your concerns and observations, while you are in there you WILL NOT remember them all!) decided to try reducing my dose of Rapamune. An amazing thing has happened, the swelling in my ankles has gone, the ‘ringing in my ears has lessened to the point where it is hardly noticeable and the ulcers/cold sores in my mouth have gone away.
Jack Hollenbach
jack_hollenbach@hotmail.com
Received double lung transplant August 2, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA

Live each day to your fullest, for it is a gift to be treasured
Hostess Rise
Board Administrator
Username: Rise

Post Number: 13964
Registered: 05-2003
Posted on Thursday, August 12, 2010 - 02:17 pm:   Edit Post Delete Post Print Post

I am very happy for you Jack:-) Go out and Celebrate!
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Med. Dir. Lung Transplant/Pulmonary Hypertension Programs
Jackson Memorial Hospital

Si Pham MD, Professor of Surgery, Dir. of Thoracic Transplant & Artificial Heart Program-Miam Transplant Institute

Anas Hadeh MD, Cleveland Clinic, Weston, Florida
CF consultant- Critical Care and Sleep Medicine

Sharing Knowledge is an Invaluable Experience
Transplant Friends & Chat
Questions- Contact Hostess Rise'
John
Board Administrator
Username: John

Post Number: 1018
Registered: 05-2003
Posted on Saturday, August 21, 2010 - 08:42 pm:   Edit Post Delete Post Print Post

I was on it for five years and it was great: lower serum creatinine, fewer overall side effects.

However, this past May I ended up in ICU for 3 weeks because of an undiagnosable lung 'something or other'. "Flash pulmonary edema" and "interstitial pneumonitis" and a few other things. On X-ray and on MRI, it LOOKED like pneumonia, the symptoms were like pneumonia with an incredibly rapid onset.

After a couple of cultures and a tissue biopsy the docs could not get ANYTHING to culture at all. So it wasn't any sort of infection.

As a last resort, one doc suggested dropping Rapamune. The improvement was spectacular.

So there are a few (a very few) reported cases of various lung side effects with Rapamue. (The early post-lung-transplant bronchal anastomotic dehiscence has been known for a while. and has a warning on the label, but not all the other oddities; they are just too uncommon and it is still impossible to really demonstrate a mode of action.

http://www.ncbi.nlm.nih.gov/pubmed/17346635

http://www.mayoclinicproceedings.com/content/79/4/541.refs

http://ndt.oxfordjournals.org/cgi/content/full/gfm420v1
http://www.pancreas-kidney.com
Lynda Keyes
Member
Username: Lyndak

Post Number: 4
Registered: 02-2010
Posted on Sunday, August 22, 2010 - 01:23 pm:   Edit Post Delete Post Print Post

I was on Rapamune and Prograf for about 8 years after my kidney tx. I felt fine, but it was discovered that this combo can reduce kidney function over time, so I was given a bunch of tests and put on Cellcept & Prograf. So far....so good.
Cora
Member
Username: Cora

Post Number: 206
Registered: 06-2007
Posted on Tuesday, August 31, 2010 - 09:42 pm:   Edit Post Delete Post Print Post

I have been on Rapamune for most of my almost 8 years post transplant. I had a cough a number of years ago and it was concluded that I had some slight diminished lung function most likely due to the rapa. I am currently short of breath which is under investigation and am looking once again into the issues with rapa (thanks for the links John). I hope it's something else simply because I have otherwise done really well on this drug.

Cora
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008
Hostess Rise
Board Administrator
Username: Rise

Post Number: 14333
Registered: 05-2003
Posted on Wednesday, September 01, 2010 - 02:26 pm:   Edit Post Delete Post Print Post

Sharing personal experiences is very important. I did not do well with Rapamune and had two different experiences with this drug several years apart.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic CF care

Join Facebook

Questions- Contact Hostess Rise'

My Photos on Transplant Friends

Sarah
Member
Username: Sarahbear

Post Number: 130
Registered: 06-2009
Posted on Thursday, September 02, 2010 - 09:30 pm:   Edit Post Delete Post Print Post

Rapamune almost killed me because I was so sensitive to it. I couldn't heal even if I just had a little bug bite or something and I got so anemic. They couldn't even treat the anemia with iron and aranesp shots.

It also made food go right through me and I got malnourished. I lost a dangerous amount of weight. I had to go to a new transplant nephrologist to get off of it because the transplant center did see anything wrong! The new transplant nephrologist was upset when she saw how bad off I was. Needless to say I do not go to that transplant center anymore.
Sarah
1st Kidney Transplant @ Vanderbilt Medical Center in Nashville
June 22, 1999
2nd Kidney Transplant @ Piedmont Hospital in Atlanta
June 18, 2010
Hostess Rise
Board Administrator
Username: Rise

Post Number: 14352
Registered: 05-2003
Posted on Friday, September 03, 2010 - 09:17 am:   Edit Post Delete Post Print Post

Hi Sarah

I just noticed you added your picture. I really enjoyed looking at your photos when you share them. I am happy to hear you have taken a proactive approach to your health care and knew something was wrong. Good for you. You are also blessed to have had another center to go to. Did you ever call the old center to tell them how wrong they were?
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic CF care

Join Facebook

Questions- Contact Hostess Rise'

My Photos on Transplant Friends

Sarah
Member
Username: Sarahbear

Post Number: 135
Registered: 06-2009
Posted on Friday, September 03, 2010 - 09:32 am:   Edit Post Delete Post Print Post

I have a ton of photos on my computer. I joined transplantbuddies on facebook, so you can see more on my facebook page.

I did not call the center to let them know after I left. I think they saw it coming because I would stay there and beg for labs. I had complained to the people in charge that my concerns were not being taken seriously. After I complained they started treating me differently (in a bad way). I just refused to let their lack of caring make me sicker and sicker.

They made a big deal about giving me my medical records and I only ended up with some of them. I have been told that it is illegal to withhold medical records from the patient. I am letting that situation go since I have a great transplant center now.

I have heard really good things about the clinic I had problems with. I think one of the problems was that I transferred there 4 yrs after having my first transplant at Vanderbilt and the never quite understood that I was not a new transplant.
Sarah
1st Kidney Transplant @ Vanderbilt Medical Center in Nashville
June 22, 1999
2nd Kidney Transplant @ Piedmont Hospital in Atlanta
June 18, 2010
kt30
Member
Username: Kt30

Post Number: 1
Registered: 09-2010
Posted on Sunday, September 12, 2010 - 08:10 am:   Edit Post Delete Post Print Post

Had a kidney transplant 30 yrs & on imuran for all that time with no problems . In fact, it's the only med i take along with synthroid.

Recently had several skin cancers , now drs want to put me on rapamune. Never had high cholestrol or hypertension and read that rapamune may cause these. I'm I trading one set of issues for another? Don't want to start taking more pills to counter other pills. Also read that rapamune can cause cancers also? So what's the point of changing meds???? appreciate anyone out there on rapamune who can shed some light on these concerns.
Jack
Forum Leader
Username: Johnhollenbach56

Post Number: 252
Registered: 12-2009
Posted on Sunday, September 12, 2010 - 09:01 am:   Edit Post Delete Post Print Post

Good morning kt an welcome to TB,

Though I am not familiar with Imuran first hand, I would ask the doctors the reason tat they want you to change. Yes, Rapamune has side effects, and I do believe that most (if not all) immunosuppressants make us more susceptible to skin cancers, but there would be an underlying reason hat they would want to change after this time.

I started on Rapamune about 2 years ago (from Prograf) because it is a kinder drug to my kidneys and liver - so far so good, and my feeling is if it works I follow it. Anyway, there's my two cents worth.

Stay well,
Jack Hollenbach
jack_hollenbach@hotmail.com
Received double lung transplant August 2, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA

Live each day to your fullest, for it is a gift to be treasured
kt30
Member
Username: Kt30

Post Number: 2
Registered: 09-2010
Posted on Sunday, September 12, 2010 - 09:26 am:   Edit Post Delete Post Print Post

Hi jack,
Thank you. Glad I found this site.

The reason for the suggested change from imuran to rapamune is due to having 3 skin cancers removed via surgery within the last 6 months.
(squamous cell carcinoma) Dr. thinks rapamune may slow down/stop the cancers from cropping up as they seem to appear from nowhere & grow rapidly.
Also..I got "sticker shock" to find out how much this drug costs!
Hels Bells
Member
Username: Helen_h

Post Number: 2
Registered: 06-2012
Posted on Tuesday, June 12, 2012 - 01:12 pm:   Edit Post Delete Post Print Post

Hi all
I am so pleased to read about other experiences of changing drugs. I am in my 20th year of 'Bernie the bean' and had to change from Cyclo to Rapa this month. I didn't want a biopsy to work out my increasing creatinine levels so we decided to hope it was Cyclo-toxicity rather than chronic rejection.

Fantastically my creatinine dropped straight away but boy I felt like I had been hit by a bus with the side effects. I still wonder if it was a bit of cold turkey after years of Cyclo!

I got a mouth ulcer which is under control thanks to lots of rinses and bonjela but I am battling with really itchy, dry skin on my arms, neck and face. It is eczema which seems to have flared up since no more Cyclo to keep it at bay.

Has anyone else had this and any tips on coping? Did your side effects lesson over time or only when the dose was reduced? I am on very little already. I am going to try Pomegranate oil (apparently helps?), got very thick moisturisers and about to stock up on loads of oils and Vitamin B and Zinc.

Thanks all and good to be in touch with other transplants.
Helen

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