The effects of immunosuppressants after transplant ?

[kristina]

This is a rather delicate question...

Some years ago I learnt at a Lupus-Seminar that certain immunosupressants may cause behavioural changes, slight or otherwise...

... I cannot remember if this was due to long-term-use of correct medication

... or too high a dose of medication over a lenghty time...

... Because this is obviously a rather sensitive issue, I am aware it is a Tabu, but it was voiced at this Seminar ...

...and a leading consultant testified that changes can occur.

Has anyone noticed any effects (not physical) from immunosupressant medication and if so, how have they dealt with it?

Thanks from Kristina.



EDITED:  Moved to correct topic. Rerun - Admin.

[Deanne]

I think prednisone causes a little bit of anxiety. I noticed it before when I was on a high dose of it. I would be anxious of cars driving in the lane next to me all the time, cars merging next to me, etc.... It was always the most noticable when driving.

Now with my low dose, I don't worry so much about cars around me, but I feel anxious when I'm stopped at a light on even a slight incline and if someone is behind me, I'm always mentally calculating how far from my rear bumper they are. I drive a stick-shift and I worry about rolling back when I let my foot off the break. If it got very bad, I know I could get anti-anxiety meds, but instead, every time I feel anxious, I remind myself that I'm an excellent driver and I've been driving a stick-shift for a long, long time without a problem, so this is all in my mind. A little self-talk does the trick for me.

I know if I had to drive a road with stops on steep inclines, I'd go a long way out of my way to avoid it. I refuse to park in a specific ramp at one of the hospital buildings. Instead, I'll park at a different part of the hospital campus and take an arial tram to reach that building. The ramp has a steep incline. I got stopped in the middle of it once and almost had a panic attack. I'm not sure how much rubber I left behind, but I imagine the person in the car behind me was laughing his *ss off.

[BobN]

Kristina, agree with Deanne.  When I got my transplant and started taking prednisone, I did everything short of growing hair and fangs and howling at the moon.

People around me wanted to have me caged.  Definite personality change.  (Well, ok, I'm a little like that anyway, but it got worse.  Seriously.)

The effect was minimized over time as my body got used to the medicine.  Now, my family only wants to have me caged around the full moon.

Oh, and if you have a rejection episode and have to get pulsed, yowza.  Serious personality flips and whacko dreams. 

Hope these drugs aren't affecting you this way.

[MooseMom]

I had lots of energy while on higher dosages of prednisone, and that was just fine by me!  Pred didn't cause me to have any personality changes.

Now, tacrolimus is the drug that "changes" me.  I get jittery, particularly if I have to do anything that requires fine motor skills.  Swimming or running or walking is fine, but trying to sew on a button is a nightmare.  My body got used to it, but a month ago my tac trough got too low for some reason, so I had to add an extra milligram to my regime, and now I sound like a bi*ch!  LOL!  My husband is always asking me if I'm mad at him or if I'm annoyed, so I'm often having to apologize for my shaky voice and general annoying demeanor.  If I'm really tired, it's worse.  I'm sure I'll get used to the increased dosage in time, but in the meantime, I try to make a joke out of it.  My husband and I both realize that "it's just the tac," but he makes damn sure he picks up his socks!!  Sometimes, being immunosuppressed rocks!

[kristina]

Thank you for your descriptions, Deanne, BobN and MooseMom.
 
The reason for my asking is that I have talked to a few Lupus-girls and they all took Corticosteroids ...
They all  complained about problems like “senior moments” , forgetfulness, huge weight gain...
... they also had to write down everything to make sure they would not forget things...
...and then I saw the film “Bigger Than Life” with James Mason, a film that was based on the 1955 article in “The New Yorker” 
by medical writer Berton Roueché, entitled "Ten Feet Tall" (the film is about the misuse and side-effects of “Cortison”) ...
... It is quite a frightening film and I just thought I should find out more
about the side-effects of post-transplant medication like immunosuppressants...

I have read that “usually” Lupus-patients are advised to strictly follow a maximum dose of 7.5 mg of Prednisone
for the general control of Lupus...
... but I don’t know what the amount is for kidney-transplant patients.

Thanks again from Kristina.

[MooseMom]

Kristina, I can tell you that I was started on a prednisone dosage of 30 mg and was fairly quickly weaned to 20.  Then I was told to reduce the dosage by 5 mg per week until I reached 5 mg which seems to be the maintenance dosage for kidney tx patients.  Of course this could vary for patients who are dealing with something extra like lupus.

I gained 10 lbs during the first 8 months post tx, but I've lost that weight.

I didn't experience "senior moments", but I think it is fair to say that dealing with something life changing like a transplant and the whole post tx experience can be distracting, to say the least.

Again, maybe lupus changes the calculus.

[Litegirl]

Kristina, most kidney transplant patients take 5 mg of prednisone daily. It's a very low dose which does not play any role in mood changes. But during first months after the surgery and during episodes of rejections if any happen prednisone doses are really high. Though not everyone reacts on them. I am very sensitive to increased blood concentration of Prograf (Tacrolimus), Sandimmune ( Cyclosporine) and Rapamune ( Sirolimus). I get nervous, anxious and hot tempered.
Everything goes back to normal as soon as my drug blood concentration is lowered to the target level. The worst neurotoxic side effect has Prograf. But at the same time it is the most strong and the best antirejection drug, "gold standard" drug as it is called.

[Deanne]

I'm down to 5 mg of prednisone now. They took 5 months to get me down to this dose. I've whined here a lot about the affects of prednisone on my muscles. To me, this is a big problem since I prefer to be active, but this is the only real problem I have with it. The anxiety in my car is minor. I think I have the munchies a little bit more than usual, but I'm not sure - My weight is / has always been pretty stable. I don't think I have mood swings.

[Angiepkd]

I have noticed that I am very short-tempered since taking a high dose of Prograf.  Usually, it is my husband who gets annoyed easily, and I am very laid back.  Since he was my donor, I blame it on his kidney lol!

[kristina]

Thanks MooseMom, Litegirl, Deanne and Angiepkd for your straightforward answers.

It makes everything clearer and thanks for explaining the different medications, it is very much appreciated.

Thanks again for these useful pieces of information.

Kind regards from Kristina.

[lainiepop]

Prednisolone caused mood swings I was anxious, would cry over any little thing, everything was a way bigger deal than it should have been, then was angry and snappy etc. luckily I was weaned off that completely by seven months post tx.
I'm lucky the others haven't caused behavioural changes ( or else they are so slight I don't notice them!) Or tbh many effects at all, the pred. Made me hungry, the mmf caused stomach upsets so they switch ed me to azathioprine which caused my hair to thin a lot for the first 7 months it it fine now and thick again. The tacro has never caused me any probs so I think I'm lucky. I take tacro 2mg morn and night and azathioprine 75mg in morning so not a lot much less than before tx when I was on bp pills, sodium bicarb, binders and aspirin. Honestly tho drugs affect people differently but I think its well known pred can affect moods xx

[jeannea]

I am tired of being told that 5 mg of prednisone doesn't have side effects. My doctor told me that too. Yes it can and does. Esp after 16 years on prednisone.

[MooseMom]

I am tired of being told that 5 mg of prednisone doesn't have side effects. My doctor told me that too. Yes it can and does. Esp after 16 years on prednisone.

Jeannea, could you explain more about what kind of side effects you experienced throughout 16 years?  Were the side effects different at, say, the 5 year point than at the 15 year point post tx?

[SooMK]

I'm three months out and like others I notice the jittery, anxious feeling I get sometimes. I'm not on prednisone. I'm on tacrolimus 2mg twice a day. They've taken me off Myfortic (and Bactrim and Valcyte and dropped my tac from 3 to 2) temporarily because my white blood cell count is too low. I occasionally get these killer headaches which seem to start at night. Just had one that lasted 24 hours. My memory is still bad but I think it has improved from pre-transplant days a little. This getting old really muddies the waters on some things. But I feel like none of the side effects, so far, were as bad as what I imagined. I met a man last year who had his transplant six years ago and he said he was a different person after his transplant. He said he had no patience any more and had trouble concentrating. So I was really concerned about the side effects.

[lainiepop]

Jeanna i agree with u, i was obviously not on prednisolone for long and the dose was tapered from 25mg to start gradually down to nothing and i felt exactly the same mood and anxious wise on 25 and 5 mg doses, and i think it took me being off them a few months before my mood changed. My docs were good and told me that would be the case when i brought it up with them. I wondered if bodyweight plays a part? I am 5 foot 2 and about 105lbs ? Who knows!

Ooh i have the lack of concentration thing too now its been mentioned, and do seem to have less patience! (i blame the concentration thing on having kids and patience thing i think is inherited from dads kidney, im way more like him now in personality!!) not so much the meds!!!

[kristina]

Thank you Iainiepop, jeannea, MooseMom, SooMK and again Iainiepop for your kind thoughts.

For a long while I have been thinking would it be best to have dialysis or transplant...
... On balance I thought for me a transplant may be a better option.
... But now I read all about the side-effects of medication and this has given me a lot of thought once again
as to what would be best, dialysis or transplant...

Thank you for all your answers and your honest comments about how medication affects you.
 
... Given your experiences I wonder how you all feel about the question of dialysis versus transplant?

Thanks again from Kristina.

[MooseMom]

I've never had to experience dialysis, and I thank God every single day for that!

Kristina, please try to put all of these stories into perspective.  The people who post on sites like this usually post about the problems they (we) experience.  There are hundreds of thousands of transplant recipients who you'd never guess even had a transplant!

OK, so maybe I have trouble threading a needle, and maybe that extra milligram of tac gives me the yips.  So what?  I have a life now!  My anxiety level has plummeted from that of my pre-tx years!  I feel terrific.  I'm able to fly to London now!  I have the energy to do whatever I want to do!  I can eat whatever I like; I no longer fear being undernourished.  For me, these side effects are NOTHING compared to the trauma of dialysis.  Remember, I saw my mom struggle on dialysis, so I have a very good idea of how dialysis works (or does NOT work...).

Also, remember that it is often all too easy to blame everything on the meds.  Sometimes I get annoyed not because of the tac but, rather, because of something that would make ANYONE annoyed.  Sometimes I am tired not because of the meds but because my new kidney has given me the energy to work too hard!

I KNOW I did not have any mood swings because of the prednisone because I was expecting that to happen, but it never did.  But remember that most tx patients are on the highest dosage of pred right after surgery, and that post surgery period is not easy in the best of times.  You're trying to recover from what is major surgery, you're taking a lot of drugs that aren't even immunosuppressants, and the sheer work it takes to keep appointments and have frequent blood draws can put anyone in a bit of a mood.  It can all be a bit overwhelming, but it's temporary and is oh so worth it.

Of course, there are those who are exceptions.  There is no doubt that there are patients who really do suffer from the side effects.  I'm not one of them.  I sailed through it all, truth be told.  But I don't have lupus, and most of the people who have posted on this thread don't have lupus, either.  I do not know if having lupus changes things; I have no idea if this condition would make it harder for you to tolerate the meds.  What has your tx team said to you about side effects?

I never thought I'd do well on dialysis.  It was just a primal feeling I had.  I never believed I would thrive.  I planned to use NxStage; I was as prepared as I could be.  But I never truly believed I would do well.  On the other hand, I never for a moment feared transplant.  I had the same primal feeling that transplant would be the best treatment for me.  I truly believed that I wouldn't have overwhelming problems with the meds.  And at least in this moment in time, my deep belief proved to be true.  I am ecstatic, grateful and joyful every day.  Far from fearing the meds, I'm deeply, DEEPLY grateful they exist. 

[kristina]

Thank you MooseMom, for going to such a great deal of trouble to bring a balance to this serious issue of transplant versus dialysis.
As I stand at the moment, my thoughts are similar to yours.
I am at the very beginning of the transplant programme, so I am just preparing my questions to put to the transplant team...

Just another interesting input into the discussion on transplant-medication:
I know someone who discovered that they became a little calmer whilst enduring a very stressful, depressing situation
by taking one little square of organic dark chocolate every day which contains a minimum cocoa of 70% .
... 70% organic cocoa is known to create a stimulant in the brain which to some degree makes one a little happier, calmer and more relaxed.
Though there may not be any hard scientific evidence to conclusively prove the effects might be substantial,
I wonder if taking such a tiny little piece of chocolate such as this every day would in some way counteract
the unstabling effect of medicine such as Prednisone? ... Or, is Prednisone for example so strong,
it would overpower any beneficial effect of a tiny square of 70% cocoa organic dark chocolate?

Thanks again from Kristina.

[Deanne]

Maybe that's why I think chocolate belongs in the food pyramid, or maybe it's because I eat chocolate every day already that I don't experience the jitteriness. I've had my share of problems from the transplant. For about three months, I was sure I'd made a mistake in getting one. I was doing great on dialysis. I think I'd rather continue to deal with the problems I still have than return to dialysis though. I don't think transplant is right for everyone though. It isn't a return to pre-ESRD life, at least not for me, not yet. I'm hoping this kidney will last for at least 10 years. I don't know if I'll try to get another after that. I'm hoping to be old enough (over 60) that maybe I'll be able to stop working and be able to do dialysis and still have time to live a good life, instead of doing dialysis, working, and sleeping with no time left for anything else.

[jeannea]

I have almost constant nightmares from the prednisone. However, the hallucinations I had in the early years have stopped. The night sweats come and go. I have severe problems with depression. And at this point my adrenal gland is fried. It won't ever function on its own so I'm stuck on this med forever. I don't know if I can really delineate the difference between then and now exactly. It's more that the side effects have become part of my normal.

Back in 1998, shortly after my first transplant, I agreed to enter a clinical trial to stop prednisone. Prograf was very new and they had given me cyclosporin since that was the standard. I was in the first two weeks of my part in the trial. The first couple weeks you definitely got prednisone then after that you didn't know if it was prednisone or placebo. Preliminary results were coming in from other patients and there was a 5 times greater rejection without prednisone. My hospital pulled everyone out and gave us our prednisone. So I guess I chose this path but I still want to complain.

I don't know if I'll ever have a normal sleep schedule again. My depression has gotten worse. I am often not fit for society. Some people are fine on 5 mg but I am not one of those people. Back in 1998 they started me on 120 mg with a year long taper. Maybe that did me in.

[lainiepop]

I had a pre-emptive tx from my dad so skipped dialysis, i did not want dialysis, i feel similar to moosemom! The tx team did not want me to do dialysis either, as i had 2 young kids, one doctor said to me, u will have a live donor tx before the need to start dialysis! Ok then, shall i just drag someone in and cut out their kidney?! lol. Its not always that easy!

One Q i have for u kristina is why r u so certain u will have to even take pred? Lots of centres now are in the UK cutting it out of their programme due to the long term effects of it on the body (and the fact that if you're on it too long its not easy to come off.) Particularly with my age they said with the risk of thinning of bones from pred they didnt want me on it so i only had it for a few months, if it concerns you enquire about the non pred protocol. It is done and is being done more!

[MooseMom]

I have almost constant nightmares from the prednisone. However, the hallucinations I had in the early years have stopped. The night sweats come and go. I have severe problems with depression. And at this point my adrenal gland is fried. It won't ever function on its own so I'm stuck on this med forever. I don't know if I can really delineate the difference between then and now exactly. It's more that the side effects have become part of my normal.

Back in 1998, shortly after my first transplant, I agreed to enter a clinical trial to stop prednisone. Prograf was very new and they had given me cyclosporin since that was the standard. I was in the first two weeks of my part in the trial. The first couple weeks you definitely got prednisone then after that you didn't know if it was prednisone or placebo. Preliminary results were coming in from other patients and there was a 5 times greater rejection without prednisone. My hospital pulled everyone out and gave us our prednisone. So I guess I chose this path but I still want to complain.

I don't know if I'll ever have a normal sleep schedule again. My depression has gotten worse. I am often not fit for society. Some people are fine on 5 mg but I am not one of those people. Back in 1998 they started me on 120 mg with a year long taper. Maybe that did me in.

Thanks for this info, jeannea.  You may well be correct in wondering if taking 120 mg of pred  so long ago did you in.  I can't imagine what that dosage would do to someone!  I'm really sorry you've had so many problems.

Deanne, I know you've been through the wars since your tx, and I hope things will improve for you.

We have a world famous chocolatier who has a shop within walking distance of my home, so I indulge in a square of his dark chocolate most days.  Funnily enough, he has CKD and is a patient at Northwestern.  I don't know the extent of his renal problems, though.

[jeannea]

I live on chocolate. I didn't even give it up on dialysis. I will only go so far. Chocolate is a line in the sand.

[kristina]

Thank you once again Deanne, Iainiepop, MooseMom and jeannea.
 
Deanne, I also hope, your kidney will last for many years
and I do hope that jeannea will soon have a good night’s sleep again ...
... Ianiniepop, you were lucky that your doctor supported you so much and that you had your transplant soon enough ...
... and MooseMom, it is interesting that you also have regularly a piece of dark chocolate ...
... I wonder if there is any medical-scientist reading this who might be able to clarify whether or not chocolate/cocoa 70% has a beneficial effect?

I don’t know yet the plans of the nephrologist and I have only just started to get evaluated for a kidney transplant
after realizing that my “two little fighters” are very unlikely to get better again...

... I take the point about alternatives to prednisone and also the point about high doses of any immunosuppressant medication
and I wonder if there have been any studies of the effects of immunosuppressants on pre- and post-menopausal ladies?

Thanks again from Kristina.

[cariad]

This is a rather delicate question...

Some years ago I learnt at a Lupus-Seminar that certain immunosupressants may cause behavioural changes, slight or otherwise...

... I cannot remember if this was due to long-term-use of correct medication

... or too high a dose of medication over a lenghty time...

... Because this is obviously a rather sensitive issue, I am aware it is a Tabu, but it was voiced at this Seminar ...

...and a leading consultant testified that changes can occur.

Has anyone noticed any effects (not physical) from immunosupressant medication and if so, how have they dealt with it?

Thanks from Kristina.

Absolutely anything that you put into your body has the possibility of causing behavioural changes, and not all behavioural changes are bad by the way. Hormones and neurotransmitters are the two primary components that will affect behaviour. Prednisone is a hormone and will likely cause behavioural changes but it's all so individual that chances are your experiences will be your own and not terribly relevant to anyone else's. Aging, sleep or lack of, diet, pregnancy, sex or lack of, and just about any major event in a person's life can alter one's behaviour and/or disrupt the hormonal and neurotransmitter environment in one's system. Just because it can doesn't mean it will, and I think a person's view of their own behaviour is often in contrast to how the rest of the world would describe them, so you may not notice changes that others will see or you may think you've undergone dramatic changes only to hear that no one else has noticed. This is part of what makes the human experience so fascinating to me. I see nothing taboo about discussing it so long as people refrain from negatively or presumptuously commenting on another person's journey through renal failure.