Side effects

[BigSky]

As far as I am concerned (and this is just me) I would NEVER NEVER NEVER NEVER NEVER NEVER even contemplated a transplant in a million years if just one person would have mentioned to me that there was even 1 millionth percent chance that I would have had to have BOTH of my hips replaced because of the steroids used for anti-rejection.

I am extremely bitter about this. Before the transplant, I was a pretty damn good soccer player and ran about 8-10 miles a day.

Not one damn person mentioned the possibility of this happening. Sucks!!

john

That is surprising.

When I had a transplant in 89 I was told of just about every side effect possible.  Was even given a 3 ring binder full of what to expect from pre transplant up until after transplant. What the drugs were and what they did and so on.   In fact still have it after all these years.

[coravh]

 

That is surprising.

When I had a transplant in 89 I was told of just about every side effect possible.  Was even given a 3 ring binder full of what to expect from pre transplant up until after transplant. What the drugs were and what they did and so on.   In fact still have it after all these years.

I had my transplant in '02 and received a manual. It has everything! Diet and exercise, what immunizations I can have, drug interactions, infections, and of course, about 30 pages of the various drugs (not just the anti-rejection), how to take them, what dosages, and what the side effects are.

I still refer to it, even though it has been almost 4 years.

Cora

[angieskidney]

I got a huge binder myself but never noticed anything about the Immunosuppressants causing brittle bones. I know that can happen on dialysis though especially with high PTH levels and low Calcium. I will have to look through it again.

[MelissaJean]

I got a huge binder myself but never noticed anything about the Immunosuppressants causing brittle bones. I know that can happen on dialysis though especially with high PTH levels and low Calcium. I will have to look through it again.

After my transplant I was put on Ocal D and Fosomax for osteoperosis.

[coravh]

I got a huge binder myself but never noticed anything about the Immunosuppressants causing brittle bones. I know that can happen on dialysis though especially with high PTH levels and low Calcium. I will have to look through it again.

Prednisone is a killer on bones. That's why I jumped at the chance to be on a steroid avoidance protocol. I had significant bone loss before the tx due to diabetes and the dialysis. Since then my bones have improved considerably, and I don't even take my Actonel regularly.

Cora

[LT514]

Rerun is right about the side effects. One other: Cyclosporine (Neorla and Sandimmune) both make you grow hair. Fast. You get a beard even when you are a woman. But, it's all totally worth it. I have to have Prednisone because of my original disease, and it makes my face round. But, it's worth it. Absolutely worth it.

[Bette]

During my transplant I was on Cyclosporine, Prograf, Prednisone and Imuran. 

Most of the side effects were from prednisone - swelling, weight gain, hunger, depression, bone pain and problems.  Still my life was better with the transplant.   It took me a long time to make the decision because I did really well on CAPD.  I understand the concerns.  Good luck with your decision

[angieskidney]

Rerun is right about the side effects. One other: Cyclosporine (Neorla and Sandimmune) both make you grow hair. Fast. You get a beard even when you are a woman. But, it's all totally worth it. I have to have Prednisone because of my original disease, and it makes my face round. But, it's worth it. Absolutely worth it.

I was on Cyclosporine, Prednisone and Imuran and boy did I get facial hair ! On top of that I also got stretch marks and really bad acne!

[Crobake]

23 years post transplant and I have developed a whole slew of issues (anemia, osteoporosis, hyperparathyroidism, High BP, cataracts, central serous retinopathy, infections, achy body) My transplant is currently failing and I'm heading for dialysis. Do I want another transplant after all that? Yes. I believe I do!