The effects of immunosuppressants after transplant ?

[cariad]

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.

Right on, jeannea! This is an incredibly dismissive and condescending thing for a doctor to say. 5mg is not even that low of a dose, but that's not really the point. I was taking 1mg daily and I still vowed to get off the stuff because behavioural changes are not the only possible consequence of longterm pred use, it has a list of side effects that reads like some sort of Old Testament smiting.

If you don't mind my asking, how do you know your adrenal glands are shot? Did they do some sort of test to check for function?

[Poppylicious]

kristina, as lainiepop says they don't keep you on pred as an anti-rejection drug in the UK (unless you have some other condition/issue for which you need it).  You would probably be on it immediately but then weaned off.  Blokey was finished with the pred within two months of transplant. If it helps, I don't think I've noticed any changes in Blokey which could be attributed to the meds he's on. Yes, there have been changes brought about by the actual transplant, but none by the meds. Hope that helps!

[MooseMom]

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.

Kristina, cariad is spot on here.  We can all relate our stories to you, but they will have little bearing on what may be your own experience.

Please keep posting about your thoughts/decision process.  I hope you feel comfortable with your nephrologist and can trust his judgment.

[obsidianom]

I will wade in here carefully as I often prescribe prednisone. It is a drug with amazingly different reactions in every patient. I have gone from 5 mg to 60 in patients.
Some patients do very well on large doses , while others cant tolerate even 5 mg. Yes it an effect mood even at 5mg. My psychiatrist friend hates prednisone as he feels it destabilizes mood in susceptible patients. I tend to agree with him it can do that .
Prednisone is known as the "stress hormone"'. It is created by the adrenal glands to help deal with stress. It is not really a body hormone in reality as the real hormone is cortisol. However prednisone is a stronger analogue of cortisol with similar effects.  As the stress hormone it creates a lot of the "flight /fright " reaction in the brain and body somewhat like adrenaline. They both come from the adrenal gland. One from the cortex(thus cortisol) and the other from the medulla. (adrenaline). Both get the body geared up to handle stresses. Unfortunatly this also can create anger and irritability which are useful when in a flight /fright situation, but can be uncomfortable in many other situations. (like a marriage)Some patients get wired on prednisone like being on 15 cups of coffee. Its not pleasant. Others just feel better on it and sail through it. Its very variable. That is my experience in hundreds of patients. 
I would prefer not to be on it personally. I dont like the wired feeling it gives me. I have patients who beg for it as they feel so much better on it . It gets rid of so much of  their pain.
Any doctor who claims it has no side effects at low dose is just plain ignorant.  It can . Period. Not in everyone but in some .
 

[Angiepkd]

My worst day post tx is still a thousand times better than my best day on D.  Side effects or no, I am forever grateful to have been given a second chance at a "normal" life!   

[kristina]

Thank you very much for your thoughts, cariad, Poppylicious, MooseMom, obsidianom and Angiepkd, I am very grateful indeed.

What I have learnt from all these extremely good replies, is that the post-transplant journey is very individual
and what is important is to react quickly to any problems, by contacting the appropriate transplant team.
I think I feel more balanced in my mind about going ahead with a transplant and all your replies have been extremely useful.

Thanks again from Kristina.

[jeannea]

They have not done the test for my adrenal glands. They keep tossing the idea around. But they are pretty sure that at this point I likely am stuck on prednisone. I have one native kidney removed. The other one shrunk and can't be found on ultrasound. I have two transplants, one not really functioning. So my chances are not good.

[kristina]

Hello Jeannea,
I do hope your doctors find a better way to help you medically, so that you are not "stuck" on prednisone...
and I do wish you all the best and good luck, Kristina.

[natnnnat]

Gregory has been on both kinds of dialysis and had transplants and for him, transplants win hands down.
But everybody is different.  That's the thing about it Kristina.  Gregory's experiences may have no bearing on yours.

From the little I know of you, having read your posts over the years, I might venture to suggest that you may prefer not to be in a clinical environment too much.
For that, transplant starts very medicalised, with a lot of time spent in clinics seeing medical specialists...
but then once you are stable, you are out and relatively independent.  From the point of view of obtaining years of relative independence, transplants might have it.  But the start is usually a few months of daily clinic visits.
By contrast, dialysis might require in-clinic visits every second day for the whole time... that's the other end of the scale.
Maybe home dialysis would suit you, you are very careful and pay attention to detail (so far as I can tell from your posts)... but I think home dialysis does require access to a good trustworthy nephrologist and support clinic.  Have you located a nephrologist you can talk to and trust?