Hello,
Just over two months PT and starting to notice a few issues, at first I put these down to steroids, antivirals and diuretics but now realising it is the lifelong immno’s. Itchy skin, bruising, white blotchy marks, up the the night for no 1’s etc, breathless and then wobbly.
Anyone else having issues and how long do they last?
Thanks
You should consult your transplant team on this one - you are still very early post transplant so I imagine you are still in regular clinics. It might be that your particular immune suppressant doesn't suit you - we get that a lot with Auto-Immune Hepatitis and people have to swap.
Give your co-ordinators or nurses or ward a bell, list whats going on and see what they say.
Katie
Thanks AyrshireK,
At the Royal Free Friday for my regular clinic and it is on my discussion list. Was wondering what other people’s experience was. They have said that they do not like to swap but let’s see how we go. The blood results are all good.
My husband had to swap from adeport adeport to envarsus as it was causing his potassium too be too high, then he had to go back on half a steroid tablet due to aches & pains that he didn't have prior to transplant, his team at the royal free are making a referral for this as he is just coming up for 6 months
His white blood cell count was 2 high 2 weeks ago so that have taken him off one of his anti rejection drugs
It's a balancing game to get it right hubby has currently gone back to appointments fortnightly after being every 5 weeks
You need to tell them what's up so they can adjust your medication accordingly
Can I ask what consultant you see at the Royal Free? My consultant is Dr Kallis.
Thanks
Andy,
The first pt clinic was with Dr Kallis but I am now next door with Dr Warburton, tall chap with a goatee.
Thanks for the update on your side effects. At first I put it down to the steroids, antivirals etc but thanks to this forum and am realising where the problem lies. Have two new creams and antihistamines, things are better. Have pretty much similar issues but not the titanitus, pleased for me and emphathise for you.
Good luck and I hope things improve quickly.
Mark
I was pretty much the same apart from the skin problems you describe.
Two months post transplant I started experiencing shortness of breath and having to go to the toilet rather urgently in the middle of the night.
I was that concerned about the shortness of breath I asked my consultant for a chest x-ray which he immediately sent me for at my fortnightly clinic.....all clear thankfully.
The good news is that all these symptoms soon passed for me within the following month.
It wouldn't be a bad idea to inform your co-ordinators as to what you are experiencing , they would rather be aware of these things than not and I suspect it will give you peace of mind after speaking to them.
I hope, like me, these symptoms soon pass for you.
Mitch
It's pretty normal to experience side effects mine lasted for about 4-5 months but we are all different .. the breathlessness is due to steroid I constantly thought it was my asthma but about six months later they told me lol
If things continue longer than a few months just inform your transplant hospital and I have to say I have been on 3 different types it is finding what is right for us individually 😊
Thanks jojo,
All useful advice, give it a bit of time seems to be the theme.
Keep well!
It's still early days for you, I'm sure everything will settle in time. I doubt it's the immunosuppressants but it is worth mentioning everything at your liver clinic. I keep any questions or concerns on my notes app so I don't risk forgetting anything. Makes it easier to add things as and when you think of them seeing that my phone is practically stuck to my hand 😅.
One bizarre side effect during the first few months for me was feeling everybody had a bad breath, including my family 😷. Could smell it from miles away, it was disgusting! I think it was the steroids as it went away once they were stopped.
Hmmm,
Glad I have not had the bad breath thing but great advice on the notes app. I’ve made a ‘note’ of that one.
Look after yourself.
Mark
Sorry about the delayed reply but thanks everyone. Using the Dermol and zerobase from pre-transplan. The skin problem is due to a pigmentation issue associated with Mycophenolate.
Chest x-ray showed a minor inflammation, which will pass. Passing fluid is because I still have a few litres to flush out. Bloods are good and with time, all should be good. Clinic now gone out to five weeks, Adaport cut, so looking good.
Thanks again for the input.
Mark
Such an interesting side effect. Glad it went away tho KLDN. Did you notice the smell of all things heightened?
I don't think so Phoenix. Just the stinky breath 😷
Not the worst side effect I'm sure but an awful one none the less. Glad that didnt last 😅
Hi there,
I'm 15 months post transplant and this year I have suffered from so many side effects which I believe were directly related to immune suppressant medication. I used to get very out of breath, a bit light headed when I stood up, ringing in my ears (I still have that, it drives me crazy), a brain fog type feeling, my short term memory has become very poor (as has my attention span), occasional headaches, occasional cramp, joint pains, definite fatigue and tiredness.
I also used to suffer with plenty of itchy skin but it seems to be a bit better of late. My consultant said it was probably down to my bile ducts being a little shrunken where they have been joined. I now take a medication to thin the bile juice down (Ursodeoxycholic Acid). Itchy skin can also be an early warning sign for potential liver problems.
When you look at the side effect sheet for immune suppressants it's pretty clear that everything can be blamed on them. It's sometimes difficult to really tell what is what but I genuinely believe that immune suppressants are responsible for all of the issues I mentioned above.
Today has been a good day for me. Right now my tinnitus is at full volume like it always is of a night but the fatigue that constantly plagues me has been much better today. I'm glad I found your post because I made a post not even a week ago on here called "Immune suppressant side effects"
My current immune suppression is 125mg Ciclosporin daily but it started off as 400mg in hospital. I have cut down by 25mg at a time for a long while to try and alleviate side effects but I can't go any lower now.
Andy.
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