Transplant People: Your truth about Anti-Rejection Drugs and Effects

[kickingandscreaming]

I have been on PD since January and I am quite aware that the clock is ticking on my peritoneum and that it's a matter of time before I can no longer do PD and will then have to choose between Hemo and death. Hemo is not at all appealing to me.  I am not on the transplant list--yet-- and have great fears about the anti-rejection drugs and and havoc I imagine them to do.  I realize that those of you who are successfully living with a Tx might try to minimize the effects of these drugs since they are necessary and we all want to think that the effects of these drugs are worth it. I'm not so sure about that.

I'm asking to be talked down from the ledge where I fear the drugs so much that I haven't yet tried to qualify for a TX.  I'm 74, so I'm not a prime candidate for TX and would only qualify for an old cadaverous kidney (sure doesn't sound appetizing) anyway.  I realize that many awful medical conditions could befall me well before I would even make the list, but I really need to hear the truth about these drugs and their effects-- in all their glory and awfulness.  Only then could I have done my due diligence about whether the whole idea makes sense or not. Or whether I should just work on my head to be ready to die at some point.

[MooseMom]

I can tell you exactly how these drugs have affected me but only with the understanding that these are MY experiences and MINE only.  I cannot speak to how these drugs might have affected others.

I am lucky in that I had no underlying health issues other than the fsgs that eventually landed me on the tx list.  I am also lucky that I got a cadaveric tx before I had to start hemo.

I take the usual three med cocktail of immunosuppressants.  I started on 30 mg of prednisone which was fairly quickly whittled down to 5mg, which is what I am on now.  The prednisone DID make me gain a bit of weight, and while it did not cause that classic moonface, it did cause the skin around my eyes to puff up, and that literally happened over the course of one night.  I awoke one morning with puffy eyes and have not been able to do anything about it.  Four years on, I don't notice it.

I also started with the usual dose of myfortic, 360 mg in the morning and 360 in the evening.  A few months after starting this med, I had a severe case of neutropenia in which my absolute neutrophils (a specific type of white blood cell) were almost obliterated.  My tx coordinator (who is in another state) arranged to have me go to the ER in my town, and they put me in the hospital for 4 days and ran every test imaginable.  Finally they came to the conclusion that it was the myfortic that had caused this, so I was given two shots over two days of neupogen, and that problem was solved.  I didn't feel unwell, but obviously I couldn't be running around without any absolute neutrophils!  I later found out that neutropenia not uncommonly occurs around 100 days after tx.  Other than that, I can't think of any other effect of this med that bothers me.

The final med I take is tacrolimus, which is the finickey-is one of all.  This is the drug where the dosage will be "fluid" for at least the first year post tx.  Each month post tx, the low point (or, trough) will be measured to make sure that enough remains in your system to keep rejection at bay.

Tacrolimus made me lose hair.  It was distressing in that it seemed to happen all at once.  I was given lots of advice on what I could do about it, but none of it really worked.  After a few months, the hair loss stopped.  Much has returned, but it is still thinner than what I was used to, but I had a lot of hair, so it is not that noticeable to me.

Tacrolimus also makes me jittery.  If I am tired and/or hungry, I find it hard to, say, write.  So, I will either sit down and read a book, or I will go outside and do something big and physical like just take a walk or something.  This physical jitteriness can also, if I'm not careful, make me bitchy and irritable.  It's not like this all of the time by any means, but it does occur from time to time.  I live with it and it is not that big of a deal to me. 

And that's pretty much it.  I've not even had a cold since I've been on these meds.  I do weight bearing exercise to help prevent bone weakening due to long term steroid use, I take vitamins to prevent magnesium leaching, and I take good care of myself.  I live a normal life and am proud and lucky that I have been given the chance to have that normal life. 

I hope this helps.  I feared dialysis so much but never had any fear of tx.  Isn't that odd.

Please let me know if I can help in any way.

[KatieV]

I don't have time right now, but I'm writing to remind myself to do a detailed response later...

I have had two transplants and A LOT of issues with immunosuppression.  Seems like every side effect known to the drugs - and even some that weren't!  That said, we did find a combination that worked (my second transplant was killed by the BK virus).

[kickingandscreaming]

Thank you MooseMom for your detailed responses.  I look forward to reading what you have to say, KatieV when you have the chance. I realize that each of you can only speak from your own experience and that that might not apply to anyone else.  It is still useful for me to know about it.  Right now, PD is working for me and I feel no need to rock the boat--even if an organ were available to me which it isn't.  But I'm looking ahead. I like to know as much about where I'm stepping as possible even tho I know I can't know it all.

[Deanne]

The initial list of medications looks daunting, but many of them will go away over time, so try not to let them scare you. You're on medications while on dialysis, too, so you're just changing one set of meds for another.

My first post-tx issue wasn't medication-related, but I'm including it because there's more to transplant than medications. The stent they inserted during the transplant surgery turned into a breeding ground for calcium deposits / kidney stones. They couldn't remove the stent and it was miserable to live with it for a few months because it caused bladder irritation. It finally required anesthesia so a urologist could blast the stones. They inserted a nephropathy bag for a couple of weeks to make sure the stones were gone. The nephropathy bag wasn't a big deal and was a 30-second, painless thing to remove. 

Prednisone: I started to develop anxiety symptoms about six months post-transplant. I finally started an anti-anxiety medication a couple of months ago. I'm 2.5 years post-transplant. I should have asked for medication much sooner instead of trying to cope with it for so long. It's better now and I'm hoping for total resolution.

Prednisone: I have borderline osteoporosis.

Prednisone: I lost a lot of strength post-transplant. I was able to regain it with time and persistence. I lost it all again a year later, but the second time was caused by an issue related to kidney disease itself, not to the transplant or medications.

Partly prednisone, partly life choice: I've been putting a lot of time and effort into staying fit, both pre- and post-transplant. I see it as a medical necessity, as well as just allowing me to live a more full, active life. Fitness is necessary to combat the prednisone munchies and osteoporosis, as well as providing other medical benefits. I don't have problems with weight gain, at least not yet. I have a hard time controlling the urge to eat sweets and fatty foods. This is also a "gift" from prednisone.

Cellcept: I had bad and painful diarrhea. They changed me to Myfortic and it was resolved.

Tacrolimus: I sometimes have a slight tremor, but it's only noticeable in that my handwriting is bad. I type almost everything on my computer anyway, so it isn't a bother.

Like MooseMom, I had some hair loss post-transplant, but my hair never looked thin and it all came back. I've always had thick and curly hair and it's still thick and curly.


Is it worth it? Yes! I have freedom again. I feel "normal."

[coravh]

I'm going to repeat MooseMom's disclaimer, and tell you that this is my experience. I was terrified of the drugs. Especially of getting sick because of them. I will tell you honestly that your first year post transplant is filled with paranoia. Not sickness.....paranoia. And 3 months after my tx (and I'd spent almost a month of that in hospital recovering from the surgery - I don't deal with the anaesthetic drugs that well) I caught norwalk virus in the hospital. And then spent 3 days in hospital barfing my guts out and stuck with iv's to keep me hydrated. I wasn't even able to keep many of my necessary drugs down for the better part of a week. And I walked out just fine. First bout with an illness down, paranoia eased. No harm, no foul. On my first anniversary of transplant I came down with food poisoning. Ugh. Another week in hospital. Again, missed a lot of meds and spent a lot of time throwing up. But I wasn't in the hospital (really) that long and I walked away fine. I am now almost 14 years out post kidney and I've relaxed a lot. I make sure I always wear a very high number sunscreen, but to be cautious I get checked by a dermatologist every year (so far, no problems). I use hand sanitizer when I am hitting high traffic areas (mall doors and bank machines during flu season). I don't hang out with sick people and any contractor in my home is not welcome if they are ill. But these are little things. I eat at buffets (never had a problem), love medium/rare steak (well done is yucky) and basically live a normal life with a few minor precautions. And over the years, I've had some problems with side effects from some of the meds. And you know what? They change them. There's quite a few different anti-rejection drugs out there. It may take a bit of trial and error, but they will find the right combo for you.

[MooseMom]

I would like to add:

I lost the post tx weight I gained.  I'd gained 8-10 lbs, but after about a year, it just went away.  In the patient information that comes with prednisone, weight gain and elevated appetite are mentioned, and I've heard many people say that they had "the munchies", but I never experienced that.

To echo coravh, transplant centers have a lot of different drugs in their arsenals.  New immunosuppressants are always being developed.  If one doesn't suit you, another one will.

[DialysisGoneFOREVER]

I take Astagraf, which is the 24 hour prograf, and Myfortic and THAT'S IT!! I have ZERO side effects but I'm a former elite weightlifter and runner who his in his 40s. Of course I still do heavy weightlifting and power incline walking as well as weighted dips.

Even my own neph said there are very few Tx patients in the entire country so I'm not the best judge. But I can tell you that if you maintain a proper body weight, exercise regularly, & eat healthy you will GREATLY minimize side effects!! 

[Xplantdad]

And I will add a few points if I can-as they relate to immunosuppressant drugs (not necessarily for kidney transplants though)-as my daughter has been on them since 1990 when she had her heart transplant. Here's my thoughts...which may not be the same experiences that you've had:

1) Immunosuppressants suppress each persons immune system differently. My daughter was on very low doses of them from the start-which was good-as it allowed her immune system the chance to fight the illnesses-rather than her being sick all of the time.

2) As mentioned above, they will do seeming continuous blood tests for the first year, to dial in the range of suppression of the drugs prescribed.

3) Almost all of the drugs have side effects. For my daughter, she was on cyclosporine first-which gave her much more hair...and eyebrows like Brooke Shields . She also tried myfortic and probably 15 other meds over the course of 26 years to try and lessen the BAD side effects that these drugs can have (i.e. the reason my daughter now needs a kidney is that immunosuppressants aren't kind to the kidneys). Most of the kids that were transplanted when my daughter was...have already had one, sometimes two kidney transplants...but they were on much higher doses of the immponsuppressant drugs

4) That being said, they've learned a lot in 26 years, so the drugs today are quite a bit different.

I think that the positives definitely outweigh the negatives... 

[SooMK]

I'm two and a half years post transplant and my experience has been similar to what others have written. I've been fortunate that a rare genetic kidney disease didn't show up until I was 60 and I had no other health problems. At 65 a college friend volunteered one of her kidneys so I've never been on dialysis. After the first year of drugs I now take Myfortic and tacrolimus. I think there is so much emphasis on the impact of these drugs that a fear is created that is overblown. Most of the side effects were more annoying than anything else. I think the worst side effects are those of long term use so you need to control what you can--follow the rules about sun exposure, go for regular skin checkups and then the business of avoiding infection. I caught a cold this year that put me out of commission for 6 weeks and it took me a long time to feel well again. I learned a valuable lesson that I have to protect myself even if it's socially awkward. The other part of what I consider a patient's contract is the usual--eat sensibly, get exercise, take your meds as directed and so on--we all know the drill. I would not let the fear of these drugs deter you from getting on the list. I wish you the best.

[Simon Dog]

Presnione taken for reason other than transplant.    Results: Avascular necrosis of the right hip requiring total replacement.

Common enough that an eyeball doc I know social saw me with a cane and asked what's up? I aid AVN and his response was "steroids, right?".

[kickingandscreaming]

Common enough that an eyeball doc I know social saw me with a cane and asked what's up? I aid AVN and his response was "steroids, right?".

So does that make you hesitate about using steroids so routinely as is done for transplants?

[DialysisGoneFOREVER]

Common enough that an eyeball doc I know social saw me with a cane and asked what's up? I aid AVN and his response was "steroids, right?".

So does that make you hesitate about using steroids so routinely as is done for transplants?

Many Tx hospitals across the nation are now steroid free. I only took Prednidone for the first 5 days after Tx and that was it! Now my creatinine is 1.34 and my Tx team says the kidney is working perfectly!

The difference between a transplant and depending on a MACHINE to live is the difference between LIFE & death! And I don't need to tell you which is which!  😁☺

[Simon Dog]

Many Tx hospitals across the nation are now steroid free. I only took Prednidone for the first 5 days after Tx and that was it! Now my creatinine is 1.34 and my Tx team says the kidney is working perfectly!

The difference between a transplant and depending on a MACHINE to live is the difference between LIFE & death! And I don't need to tell you which is which!  😁☺

The center I am listed at uses that protocol as well.     I was on a heavy dose of prednisone for a month (started at 100mg) and my hip died a year later.

[DialysisGoneFOREVER]

Many Tx hospitals across the nation are now steroid free. I only took Prednidone for the first 5 days after Tx and that was it! Now my creatinine is 1.34 and my Tx team says the kidney is working perfectly!

The difference between a transplant and depending on a MACHINE to live is the difference between LIFE & death! And I don't need to tell you which is which!  😁☺

The center I am listed at uses that protocol as well.     I was on a heavy dose of prednisone for a month (started at 100mg) and my hip died a year later.

I was only on steroids for 4 or 5 days. I REALLY doubt steroids for that short of a time would kill off a hip. There is quite a difference between 4 to 5 days and a month.

It seems a bit of an anomaly to take steroids for a month but the hip dies a year later??

[Simon Dog]

I was only on steroids for 4 or 5 days. I REALLY doubt steroids for that short of a time would kill off a hip. There is quite a difference between 4 to 5 days and a month.

It seems a bit of an anomaly to take steroids for a month but the hip dies a year later??

I was on very high dose prednisone for a month (started at 100mg and tapered down).

AVN is a death of the femoral head due to loss of blood circulation in that section of bone.  It is possible that the symptoms showed up well after the damage was done.  I was told the two main causes are very heavy drinking (not me) as well as steroids.    The ortho doc as well as the doc who prescribed the prednisone and the doc at the gun range were all in agreement that was the cause.

[Fabkiwi06]

This thread is so helpful and assuring. I'm waiting to hear back on the final results of my potential live donors, and this is constantly on my mind. I know the transplant is better than the dialysis, and I'm bound to experience at least some unpleasant side effects from the meds, and it's assuring to see that for the most part the effects are manageable.

In fact, the first question I asked in my transplant consultation was how long would they want to keep me on Prednisone - and thankfully my transplant center is one that tries to get you off it as soon as they can.

[DialysisGoneFOREVER]

This thread is so helpful and assuring. I'm waiting to hear back on the final results of my potential live donors, and this is constantly on my mind. I know the transplant is better than the dialysis, and I'm bound to experience at least some unpleasant side effects from the meds, and it's assuring to see that for the most part the effects are manageable.

In fact, the first question I asked in my transplant consultation was how long would they want to keep me on Prednisone - and thankfully my transplant center is one that tries to get you off it as soon as they can.

Are you going to Centennial Tx center in Nashville?

[Michael Murphy]

There is a app from Emory called ichoose. This app takes some basic information about age, gender, health and calculates your chances of dying every year, with a transplant or dialysis. The numbers are clear prof of the value of a transplant. My self I have a 14 percent chance of death every year I am on dialysis, with a transplant that would be reduced to 2 percent. 

[kickingandscreaming]

This app takes some basic information about age, gender, health and calculates your chances of dying every year, with a transplant or dialysis. The numbers are clear prof of the value of a transplant.

Interesting. I don't question the data about survival in dialysis vs. transplant.  I know the statistics say that TX is better on that score.   But just living longer isn't the only measure of whether that life is worth living.  And about whether you'd rather die from dialysis or dialysis-related side effec or from rejecting an organ or suffering with the effects of the medication. 

The point of my OP was that I DO question the quality of life that immunosuppressive drugs create/or negatively impact. That's why I wanted to get people's actual experiences.  I also know-- that in the service of cognitive assonance-- that it is easy to fool oneself that you made the right choice--when perhaps you're miserable or on some level wish you hadn't made that choice. 

I know this is only about steroids, and that's not the only drug used and in fact may not be used all that much.  As someone with Asthma I have had to go on multiple courses of prednisone many years ago.  It made me crazy--always hungry, anxious, swollen and many other symptoms.  I wouldn't want to spend my life on steroids.  But there's also all the nephrotoxic drugs like tacrolimus that make no sense to me.  Here you are, with a brand new, vulnerable kidney and what do they give you?  A drug a kills kidneys.  Pardon me if I have a hard time reconciling that idea.

[DialysisGoneFOREVER]

Hey Mike Murphy, they don't have that app for Android. You haven't gotten your Tx yet? Are you listed somewhere?

[MooseMom]

K&S, your concerns are valid.

I see other people talk about how their center is "steroid free", and I think to myself, "Well, why doesn't MY center do that?"  And then I reply to myself that it doesn't really matter to me because I'm fine.  I take only 5mg a day, and I'm fine.  I'm not sure that I'd say the same if I was taking a higher dose, though.  When you were on prednisone for your asthma, what was the dosage?

And you are right about tacrolimus.  It IS nephrotoxic, and it IS right to wonder why such a drug would be used.  You probably already have sussed this out, but I'll tell you anyway just to make sure you know.  My tx neph explained to me that the immune system is made up of "doors" and that each "door" works in its own unique way to keep out the bad guys.  So, instead of giving you massive doses of one drug that would only affect the function of one door, you are given much smaller doses of different drugs, each drug working to keep a different door halfway shut (ie, suppressing the immune system).

One of those drugs is tacrolimus, and because it is nephrotoxic in high doses, your tx neph strives to find that fine line between a dose that will prevent rejection and a dose that will damage the kidney.  And that's why you get labs done each month to test your tac trough.

If you reach the point where you are seriously considered getting listed, you will have the opportunity to speak directly to a tx coordinator, surgeon and nephrologist.  Perhaps they will give you the information you need.

My father-in-law, who is in his 80s, for some unknown reason informed me that his doctor told him that if he ever needed a transplant, he wouldn't have to take immunosuppressants because at his age, the immune system is usually already weakened.  Random information, but there you go.  Before you are listed, you will have umpteen blood draws, and I would imagine that they would end up with a good idea of how your immune system would respond to the various drugs.  You may not have to have the same level of immunosuppression as someone half your age would need.  I dunno; I'm just thinking out loud.

[Michael Murphy]

I run it on my iPad and iPhone. The numbers are not friendly, but I figure that if I am compliment my chances go up.  I go occasionally to a center in upstate New York and several times I have been in the lobby whi.esome morons brag about missing treatments on like most Friday's. 

[Michael Murphy]

I run it on my iPad and iPhone. The numbers are not friendly, but I figure that if I am compliment my chances go up.  I go occasionally to a center in upstate New York and several times I have been in the lobby whi.esome morons brag about missing treatments on like most Friday's.   Just looked on www and Emory claims it's available for android.

[kickingandscreaming]

My tx neph explained to me that the immune system is made up of "doors" and that each "door" works in its own unique way to keep out the bad guys.  So, instead of giving you massive doses of one drug that would only affect the function of one door, you are given much smaller doses of different drugs, each drug working to keep a different door halfway shut (ie, suppressing the immune system).

Thank you, MM.  Interesting metaphor and does explain some things.  I'll have to ask "someone" about the age issue.  When I took prednisone for Asthma it was ages ago so I don't trust my memory on the dosage.  I think I might have started at 40mg and titrated down over a span of time, But I could be wrong on the number.  Hated it, but it did save my life.