How hard is it to tolerate the immunosuppressants?

[RightSide]

I'm now on the transplant list at Massachusetts General Hospital.

But what scares me the most is the cocktail of immunosuppressant meds I will need to take.  I was on Prednisolone once for an allergic reaction, and the side effects (insomnia, etc.) weren't fun.  Do those side effects wear off with time?  Or are you miserable every day from the side effects of the meds?

[cariad]

Prednisone - I could write a book.

Well, I had horrific insomnia for 2 years on prednisone, and all the transplant surgeons said at the time was "drink a glass of warm milk before bed". Hopeless.

Prednisone affects people in all sorts of ways, but the typical behavioural response should be mania for the first month or so, then giving way to depression as you go on a long term, low dose. Try not to take it every other day, as this typically causes bipolar symptoms (manic on the day you take it, depressed on the day you do not). Honestly, do they have to use prednisone? My hospital does not use it. I would ask about steroid-free protocols. The other drugs - well, I wrote an entire post about the evils of Prograf in the transplant section. There are alternatives to Prograf, though, which you could explore if necessary. I take Myfortic (enteric coated CellCept) because I tolerate it better than CellCept. So, to answer your questions - no, not miserable every day, and yes the side effects should diminish in time, maybe even disappear. I really hope I'm not scaring you, because I would take this over dialysis any day.

It really is impossible to know how these drugs in combination are going to affect you. I would keep in constant communication with the hospital post-transplant if something becomes intolerable. They gave me ativan for nausea, but it is also excellent for insomnia. I take it as needed for that. My mother (not on prednisone) swears by low-dose Xanax for the same purpose. I treat my Prograf symptoms with tylenol, and if I still cannot stand it in a month, I am going to ask to be switched to Rapamune. Rapamune seems like a superior drug to me - it apparently does not have the nephrotoxic issues that Prograf does, and people seem to have less problem with it. 

Also, keep pressuring the hospital to consider stopping or reducing doses of drugs. I never thought to do this as a kid, and when I finally starting asking in my early 20s, I got a lot of questions like "Why are you still taking Pennicillian and Bactrim every day?" Uh, cause they told me to a million years ago....?

Congrats on getting on the list, and best of luck.

[monrein]

And of course we're all so different.  I've been on low dose prednisone since 1985, had the moon face  but no depression, occasional insommnia, some mood swings but had friends on zero meds, perfect health, who had way more ups and downs than me. 

I seem to have some arthralgia pain in my hands and feet since my latest transplant but I take nothing for it but did get some orthotics for my shoes.

For me the drugs, including the prednisone, are worth the benefits of transplant although obviously the less of anything that we can get away with the better.  Question everything and stay informed.  Address symptoms immediately with your nephrologist as they arise and then it's just a matter of discovering how this stuff will affect you specifically.

[chris73]

Going to the Dr on monday for depression , insomnia and joint/bone pain .This such a great place for info, I learn something new evertime I log on.. ...like cariad said beats dialysis!  Chris

[jbeany]

I'm getting off easy on side effects, as far as I can tell.  (Given what else went wrong for me, I guess I deserve a break on something!)  I've skipped the moon face entirely.  I only noticed the mood swings at higher doses, and then I was only weepy at sappy books and commercials.  I sleep like a rock for 8 hours every night.  I did get the horrible appetite increase, but even that is much less now that I'm on 7.5 mgs.  My weight has held steady for a while now, and is actually creeping ever so slowly down.  (Losing half a pound in a month counts.  Really.)   If the doc ever gets back from his holiday weekend and looks over my last lab results, I may be down to 5 mg.  I did have some major hair loss, but that was made far worse by the rest of the complications I had.  Now that I'm down to a small dose of prednisone, it's growing back nicely.  It's thinner than it was, but at this point, I'm just so happy not to have bald spots, I don't even care.  The stray fuzz on my face is manageable, and thanks to a Greek grandfather, not really anything new anyhow....

So my answer is "No."  I'm not miserable from the side effects at all.  I've got more energy than I've had in a decade; I can drink all the fluid I want, and I only get poked with a needle once a month during my blood work draws.  Any odd side effects are totally worth being off dialysis.

Don't count your side effects before they're hatched.  You might be lucky and have very few, too.

[Meinuk]

Ok, I am almost two years in.  My take is: Well worth it, but not bump free.

I am only on three meds: CellCept, Prograf and Prednisone.  Sometimes I take tylenol for aches and pains, but I try to stay away from medication.

I still have the prograf (4mg AM/4mg PM) shakes, not bad, but I do tremor, mostly my right hand.

Cellcept 1,000 MG AM/1,000 mg PM) - no problems at all.

Prednisone (5mg AM) Don't think that my dose is high enough for side effects... who knows...

Overall changes  - I don't know what med to blame... 

1. My hair has thinned.  What used to be my best asset, I now just keep in a pony tail. 

2. I don't sleep very well.  I just kicked the Benadryl habit.

3. I am moodier than ever, have ZERO tolerance, and have to work on tolerance every hour of every day.

4. My skin seems thinner - more easily sunburned.

5. I cry at the drop of a hat (which amuses EVERYONE - seriously, I have taken more crap over the bawling than anything else... see # 3)

[staceyand joe92]

I am on Cellcept and Prograf. I have had MAJOR hair loss from the prograf. I have become a master at covering up bald spots. The Cellcept has destroyed my WBC count. I now take Nuepogen injections three times a week to improve my immune system.  Even with the side effects and being locked in my house for three months until my immune system improved I wouldn't trade my new kidney for anything in the World. I feel like a new person!

[okarol]

Jenna is on steroid free protocol, so none of the side affects from prednisone. She hasn't had any problems with the Cellcept or Prograf, they monitor the trough levels very carefully to keep you high enough to avoid rejection but low eneugh so your immune system works a bit, and you don't get toxicity.

[natnnnat]

Gregory is on prednisolone 10ml, betaloc 50mlx2 and cellcept 100ml are the daily doses.  He has been on the same dosage since they settled on those levels about 18 years ago, except the betaloc was recently increased up from 50ml per day to 50ml x 2.  He is almost as bald as you can get, and his hands shake sometimes.  He has a bit of um, sometime he gets the runs.  He can be moody, but it doesn't last.  When you aren't expecting it it can be pretty exciting, to find that suddenly he is full of rage about the dishes or something, but then you find him washing them gentle as a lamb.  I know for sure he loves his transplant and prefers it over dialysis.  He had restless leg, but it settled down.  He says it was a rough ride in the start, getting the transplant was one thing, but his didn't start working for about three weeks, and then later when they took the stent out the urethra collapsed and they went in several times to work out what to do about that.  He has the increased appetite, and he gained a lot of weight, which he has more or less lost with regular walking and some attention to diet.  Bone pain, he got that for awhile, and he got the moon face, he says that it was worst at first.  He says maybe it took about 6 months for most of those symptoms to settle down. 

He's not miserable much, only when life gets him down.  He tells silly jokes.  Hey RightSide, congrats on getting on the transplant list.  I'm really pleased to hear it.

[cariad]

Oh, and I wanted to just throw this out there since you are going to Mass Gen. They are one of the few places in the country pioneering these tolerance trials to get you off of all immunosuppressants in about a year. I would ask them about what they have going forward at this point. They are now trying cadaver donors for people going for their first transplant. That one has been marked suspended, but who knows what that means - could be a simple issue like the one that put my transplant on hold. If you are interested, I would call their research nurse. They might not have anything on right now, but they almost certainly will in the near future. I have written extensively about how glad I am to be in a similar trial, but if you ever want more info, I would be happy to answer questions via PM.

[kellyt]

For me, I tolerate them fine (Prograf and Cellcept).  Hair loss with the Cellcept, but I have a lot of hair.  It's also changed my hair as far as the curl.  It's more frizzy now, but, again, I can deal with that.  I complain now and then, but it's not that bad.

[whiskeyfrank]

I'm in the UK so might be different, but i was on Cellcept (2000mg), tacrolimus (prograf in the US) 10mg and prednisolone 10 mg. I got CMV so they took me off cellcept and its made no difference whatsoever to my creat level. In fact they have reduced all my drugs now, and its still the same although im on loads of antivirals.

My side affects were

increased appetite (but i did loose 5 stone)

slight hair thinning

the cellcept kept giving me diarrhea

and the obligatory shaking hands from tacrolimus (prograf you call it)

but to be honest - any side affects are better that kidney failure - my son thinks my shaking hands are funny when ive got a coffee - my wife thinks i need to get to 12 stone (as im 6ft3)  and my hair is rubbish anyway.

I make light but i am sympathetic for those that have worse.

im now on 6mg prograf and 5mg prednis and thats it, so im lucky i guess

[kellyt]

You know, I said I tolerated the side effects well, and I did,  but I had more than I realized I guess.  lol  When Whiskeyfrank mentioned his side effects, it reminded me of some.  But I still tolerated them well.

I also was taken off Cellcept for about 6-8 months when I was having issues when a lymphocele.  Once it was taken care of I was placed back on the Cellcept.  I noticed no difference in labs either.

One good side effect though - right after transplant when I was on 4/4 of the Prograf and on 4/4 Cellcept my legs were smooth as butter after I shaved and I could go weeks without regrowth!  It was awesome!  Now, the hair on my legs is much lighter and there is hardly any hair on the back of my thighs.  I also haven't had to shave my underarms in months!  No hair!!!   For ladies this is a huge plus!!!     I probably have to shave my legs once every two weeks now.       TMI?   

[monrein]

Ahhh Kelly....you should have seen the hair growth from Cyclosporine...masses of it everywhere.   A full time job thwacking it away!!!

[kellyt]

How horrible!  I didn't notice a lot of hair growth with the Prednisone either.  Just heavy peach fuzz on the face and neck.  Easily removed.

[jbeany]

Ahh, yes, not shaving my legs for weeks is a great bonus!

[jennyc]

Hi,

well it isn't all scary, as someone else said its different for everyone (i've had other issues so thank god the meds are tolerable). (mind you i have a 0 match with my kidney)

I'm down to 10mg of pred and still have horrid moon face but weight is stabilizing and starting to come down (hard when 20mg). for me i had the mania but not the depression (that stopped once i stopped the pain meds). The pred has actually thickened my hair but the cellcept and anemia are making it fall out (i'm at 80-90 for anemia due to recent operations, back on aranesp for short term). at the start the agression with the pred was the worst, mood swings eventually calmed down though and hopefully my pred will be dropped to 5mg soon and i;ll stay there.

Cellcept... as i said hair fall and also the dreaded runs, they dropped me to 3 tablets a day and i take it with food and it stopped the runs (persist after 3 months biopsy to decrease to 3 tabs as it can affect your bowels if the runs go on too long).

Prograf: my main side effect was also a bit of mania, need to exercise before bed to sleep (short walk, 3-4 kms then i'm out). Shakes (i do get this quite bad) and the cold burning in the hands, toes and lips.... this is only when i'm a bit high. also if i'm too high i get cold/hot and sleep alot but now that i'm dropped to 2 * 2 a day thathas stopped as well (i was on 3 * 3).


i don't really notice any other side effects. now that i'm almost 7 months out they aren't too bad, even the hair fall is decreasing. It used to come out in lumps but now just a little bit more than normal.

I think the worst things are the vanity affected side effects (eg hair growth and moon face) but even then you get to live with it, that's why you have wax!

I still get cold burns (not as bad as its sounds, kind of like dead arm and hanging wet clothes on a cold morning) in feet and hands but it's nothing really bad.

Honestlly even with med side effects post transplant on my worst day is still 1000 tiomes better than my best day on D

[Riki]

I honestly don't know why anyone would stay on prednisone longer than a few months.  Whenever I was on it, I had a schedule for tapering until I was off it completely.  It was used to fight the rejections I had, and the short use that I had with it caused cataracts to form.  It can also cause a lot of joint pain.

Antirejection drugs have changed a lot since I stopped taking them 6 years ago.  I was on cylcosporin and cellcept, and the cellcept had to be at lower doses, because the higher doses made me sick to my stomach.  They eventually took me off the cellcept and left me on just cyclosporin.  It caused major hair growth on my face, and Istill battle it.  I could grow a full beard if I wanted to, in fact, right now, I pretty much have one.  I use veet and nair to take it off, but it burns the skin, so I hate doing it.  If I could find some other way to get rid of it that didn't burn and didn't cost a fortune, it would be great.

[natnnnat]

Gregory's still on prednisolone (sp?)... cellcept... and bettaloc (heart tablet).  He shakes a bit but not much.  Occasional diarhorrea (sp?)  (it's way too late at night here for this black duck to be spelling things like that correctly.)  Occasional angry dance... there was a funny one the other night, he got cranky about how many plastic containers we have.  I heard him crashing about in the kitchen, in the plastic container drawers, going on about "all these stinkin plastic con-f&#ing-tainers!"

[kellyt]

I honestly don't know why anyone would stay on prednisone longer than a few months.

I was on it for so long because my doctor wouldn't allow me to taper off any faster.  Believe me, I would have stopped the day I was discharged, if I had the choice.  I'm glad to be off of it 100% now, but if he said go back on I would.