Immune Suppressant Side Effects

[AndyEssex]

Hello,

I am 15 months post liver transplant and have managed to get down to 125mg of Ciclosporin a day. I have been plagued with fatigue, a little depression and anxiety, occasionally painful joints but mostly a brain fog type feeling and ringing in my ears.

This week I have been put on 500mg of Mycophenolate twice daily to help eventually lower my Ciclosporin dosage even further. Even after a couple of days my ears are ringing like crazy even more and my brain fog definitely seems worse.

Not much seems to be said about immune suppression and side effects so I would be really interested to hear if anyone gets similar side effects to what I have and also what dosage of what medication. I really struggle on a daily basis with these effects. I will stay on the Microphenolate for a couple of weeks and if the enhanced side effects continue I will speak to my consultant about staying on Ciclosporin only.

Thanks so much,

Andy

Pic from Monaco 2010 it was the only one I had available quickly!

[Will3]

Hi Andy,

Sorry to hear that your struggling but you’re not alone. I seemed to do very well for the first 6 months but now I seem to be experiencing symptoms like yourself, i’m 9 months post.

Six weeks ago my medication was changed to mycophenolate 750mg twice daily from azathioprine with a view that they could lower my tacrolimus as my kidneys have been suffering, since then I seem to be plagued by fatigue, I can barely get out of bed some days. I raised this recently on one of the Facebook groups and it seems others are feeling the same on that medication.

I don’t get any ringing in my ears but I have been suffering with depression and guilt that although I have been given the precious gift of life i’m not living live to it’s fullest. I suffer brain fog and joint pain also. I feel guilty just writing all that down.

From looking at your previous post you certainly look well and i’d speak to your consultant about these issues, i’m going to see mine in 3 weeks.

You are definitely not alone feeling this way Andy, all the very best for your continued recovery.

Will

[AndyEssex in reply to Will3]

Thanks Will,

I have decided to stop the Mycophenolate as I can't suffer the side effects even after such a short period of time. I used to get "dark clouds" occasionally in my head with Ciclosporin and I haven't had them for a while but got them immediately after starting Mycophenolate. Whether I take it for 2 weeks or 6 months or seems like the side effects will not go away. I can't bear the excess tinnitus and joint pains etc.

I will now appreciate the lesser side effects of Ciclosporin and hope that its just a matter of time before I feel remotely like myself again.

[jojokarak in reply to Will3]

Hiya will I just wanted to let you know the guilty feelings are completely normal I was exactly the same as yourself..

I went and spoke to my GP about it and I was referred to a psychologist it's the best thing I have ever done I have just recently finished seeing them and I now have tricks to help me through especially if I have a crappy day please go and speak to your GP it's a hell of a lot to go through a transplant and no one but us who are post understand the pressure we put upon ourselves it won't ever change but I don't feel guilty anymore x

[Will3 in reply to jojokarak]

Thanks Jojo, i’ll do that. As great as my family and friends have been no one really understands other than a fellow post transplant patient.

[jojokarak in reply to Will3]

That's true and I always thought I was boring them to death lol

It will help you immensely speaking to a professional there cover why we feel guilty which is obvious to us but not everyone gets it ...

Just so you know from seeing GP and getting my appointment was about ten weeks but definitely would the wait

And in the meantime if you need a chat just throw me a message x

[Paulwil]

Hi Andy,

Sorry to hear about the side effects you still have.

I am 13 months post. I suffered badly from anxiety which improved after stopping prednisolone.

I still suffer a bit with fatigue but nothing like the first 6 months.

The only medication I take now is 5mg Advagraf once daily. It is slow release tacrolimus. I know taking tac is dependant on how your kidneys cope.

I hope they get on top of the side effects with your meds soon.

Paul

[AndyEssex in reply to Paulwil]

Thanks Paul,

I would say that ringing in my ears, brain fog and fatigue are the 3 side effects that I struggle with the most. I find it quite difficult to get out of bed. I also have very weird dreams every night which always result in waking up sweating and making my bed damp.

I think in general I'm doing OK and I do have quite a positive outlook on things. I just get frustrated that my recovery is taking such a long time.

[Isabelle2]

Hi Andy

I had my transplant 17 mths ago. I am on advagraph 6.5 and 2x mycophenolate 360. My side effects started about 6 wks after transplant. Terrible aches and pains in hands, Sometimes also in shoulders and neck. Last winter my hubby was putting on my socks and bra for me as it was too painful. Also turning the key in our, a tiny bit stiff, lock was impossible.

I saw a rheumatologist who found nothing and my hepto didn’t want to admit it was the drugs but finally said it might be.

On here someone told me it took him 18/24 mths for pain to nearly completely disappear. He was also taking tac and mycophenolate. That is my case. It’s still a pain, can’t open bottles of tonic etc as grip very poor and in the mornings my hands still hurt but it’s a million times better.

I don’t know how common it is as I think they try to play it down. The unfortunate thing is that we need the immunosuppresseurs to live so need to find the best ones for us - taking into consideration bloods and side effects. The side effects do get better with time but it can be very depressing.

I also have a permenant UTI since the op. It is in the background and they cant rid me of the e-coli so I have a weekly treatment to stop a full blown infection as Icant be on antibiotics all the time.

Did you have HE? I had it at the time of the transplant very badly and suffered a very , very mild brain damage which is a result of HE. My brain fog it still there a little bit, especially when tired.

I take the antidépresseurs they suggested and think I would feel far worse in myself, with all these ‘little’ health problems if I didn’t.

I hope your side effects die down

Helen

[AndyEssex]

Hi Helen,

Thanks so much for your reply. I'm not sure what HE is so I don't know if I had that or not.

I am just hoping that the brain fog and tinnitus starts to disappear over time. I really don't get a minute's peace, and the brain fog feels like someone has put a goldfish bowl over my head. I often feel vacant and my memory and attention span doesn't seem the same anymore.

My knees ache from time to time and I get occasional cramp in my hands and more frequently my feet. I always lived life as a very young person up to the age of 47 and was lucky enough never to suffer from aches and pains even though my friends of the same age used to often complain of various things. It was easy for me to sympathise but not as easy to relate. Now I feel like a 48 year old so I guess I was lucky up until a certain age!

It seems like immune suppressants have such a huge range of side effects that anything can be blamed on them. However, I am pretty sure that the fatigue, brain fog and tinnitus are 100% down to the medication. I am 15 months post liver transplant and I am just hoping and praying that the side effects that bother me the most will eventually go away.

I definitely have good days and bad days. Some days I feel like I can conquer the world and the next day I am almost completely bedridden

Andy

[Gordon99]

Hi Andy, I’m one year post. I’m on 175mg cyclosporine and 50mg azathioprine daily. I walk at least 5 miles daily, up to 11.5 miles some days. I also go to a gym. I asked for an exercise plan that would not put strain on my plumbing! I’m 61. I had a few issues with high blood potassium and was admitted twice and administered an insulin & dextrose drip and given calcium resonium to reduce it. I now have modified my diet to moderate my potassium that way. The calcium resonium tended to make me less regular. I have a healthy diet and am slowly heading towards my target BMI - a few points over as yet. If I think about side effects of my medication that I have remaining I feel that I’m pretty lucky and don’t have many left. I often feel as though I have little stamina but I can walk up hills and cover miles - I just go at my own pace - and it passes. I used to be unsteady on my feet every time I got out of bed or stood up and had to wait until I got my sea legs before tackling stairs. This has gone away recently. I feel that a good diet and exercise has helped me greatly. It has been a struggle over many months but worth the effort. Good luck to you and keep questioning how you’re feeling as progress comes through what you learn and apply. I’m hoping my daily dosage will decrease as I progress.

[jojokarak]

Hi Andy the azathioprine was the worst drug I have ever been on and that's the cheaper version of mychophenolate ... I had major depression and anxiety (and I have never suffered from either previously) and that was in the space of a week... I rang my transplant hospital and spoke to one of the consultants who was trying to convince me to perserver and I just told him not a chance I know me and my body and I didn't like the effect that drug was having on me I probably pissed them off but it's my life ..... I have now been on advagraf for the last year and it's great apart from it buggers up my kidneys

You have to do what's good for you and if that means putting your foot down then so be it

I still have fatigue but some days are better than others 😊

Hope your symptoms improve x