Hello .... my DD transplant in September 2019 is doing really well. I am doing with the usual ups and downs . Side effects such as itching , sensitive skin hair loss, muscle aching have come and gone now I notice a new one worsening of tinnitus and hearing loss . Has anyone experienced this. I’m on 6mg Tacro x 2 , 1x5 Pred and 2x!250 MMF
Jo
My transplant was on 6/6/20. My creatinine has been a constant 1.18 since. I am on a daily dosage of 3mg of envarsus-XR. I started at 6mg. I have tinnitus also. I walk 2 miles every other day and wear my hearing aid during the day. I haven’t notice any changes with the ringing in my ear. I try to eat healthy and stay active as much as I can. Don’t know what else I can do to keep the ringing from getting worse. Hope this helps.
Have you reported the tinnitus to your transplant team? Always tell them any side effects you are experiencing. You never know when it could be related to one of your immunosuppressants. The team can't help you if they are not aware of the issue you are having.
I am 21 years and counting since my transplant and take Myfortic and Neoral. I was able to stop taking prednisone about 10 years ago.
I’d love to stop prednisolone. I must keep pushing to get it removed. 1 year and 2 months in so I doubt it will come off any time soon. Was your transplant live donation or deceased.
21 years is a miracle ! How lovely to hear this. Do you ever forget you have a transplant or would you say you are still aware . Still taking care ?
Jo
I got a transplant a month ago, I’m on prednisone but only on 2.5mg which I stop today, my prednisone program started at 15mg then got reduced every week to half a tablet this week, I fully come off prednisone from tomorrow, they only put me on it for a month.
Really ! Is it the infusion that you received during the transplant? Different hospitals have different protocols. I will question this at next assessment .
Very interesting . Thank you for sharing
The nurse told me they give you this IV med which lowers your immune system and it lasts for about 3 months and they give you immune suppress drugs with it. But they gave me 2 sheets which listed all the meds I have to take and when I have to stop taking them and prednisone starts at as high dose and then gets reduced to zero after a month. The only people on the hospital ward who were given continuous long doses of high prednisone were people having a rejection episode of the new kidney but you should not be on it for more than a month.
I was on prednisone for over 10 years. I think each transplant center does things differently as far as steroids and immunosuppressant meds. I know there are some on this site that don't take any immunosuppressant meds any more at all. My nephrologist wasn't comfortable with that. Not sure I am either.
I am an active volunteer and speaker with the Donor Alliance of WY/CO, so I never forget about my transplant. I had a deceased donor who was 16 and was a great match, 4/6 tissue match. I still have labs done every 3 months and still hold my breath waiting for the results.
How interesting . I think This anticipation of blood results that happens - as I’m discovering - can be turned into a positive . Nothing can be taken for granted after a transplant and by being forced into that small airspace gratitude becomes the constant. And gratitude is not always easily attained .... I feel lucky for the opportunity to feel this emotion.
X
Jo
What did you notice changed once prednisolone was removed ?
I had to reduce it gradually over a month. I noticed absolutely nothing different. I had blood work done several times during that time and my creatinine never changed. Transplant team had said that if it changed my creatinine, I would have to restart it.
You are absolutely right about having our renal labs done - I do not take it for granted. I know I could have a rejection at any time...even after 21 years.
There have been transplant recipients on this site who all of a sudden have kidney failure after 20 years post transplant.
I know...I am so BLESSED. Someone is looking out for me! Probably my Mom & Dad up in Heaven and Ryan, my donor.
Is your biggest concern hair loss?
Hi, I found your post mentioning that your tinnitus had increased. Mine has too and is definitely the tacrolimus. I once missed an evening dose when I was on adoport and in the morning felt great! No tinnitus, felt completely calm and relaxed. My hospital has changed me to everolimus slow release, which hasn't helped and I'm trying to get them to change me over to sirolimus but they are not keen. Did things improve for you?
No it’s not I noticed it’s worse if anything . But I now realise , since boring people about it , that there are so many sufferers. I know longer attribute it to the drugs.What improvements are you hoping for on Sirolimus? I have recently starting tapering my Prednisolone … perhaps that might help
I'm hoping the tinnitus ( I call it that, it's like a fizzing, buzzing sensation) will stop. I never had it the morning after I missed my tacrolimus so would like to change before any permanent damage is done. I have never taken prednisolone ( transplant done at Manchester) and only ever been on tacro and mmf from the start. I'm looked after by Stoke Royal and they also have patients there who were transplanted at Birmingham but they are all on pred, mmf and tacrolimus . Makes you wonder if the prednisolone is necessary? Manchester certainly don't think so. I wouldn't worry too much about coming off it and the less you take the better for the rest of your body.
This is so interesting . I’m at Guys in London abd that’s the protocol yet I know at imperial they give a infusion at the beginning and don’t use Pred after a few weeks. I think it’s so important that we negotiate all we can . Would Sirolimus be a £££ issue do you think
I don't think so, a few of the cost studies I've seen online suggest it is marginally more cost effective than tacrolimus. It is also not as nephrotoxic as tacrolimus and apparently causes less potential cancer issues. It seems the main drawbacks are gastrointestinal problems and infection/healing issues. I guess we won't know unless we try but my doctors (I see three) are hoping that I will just put up with the tacro side effects because my kidney figures as so good.
Yes… do you concern is cancer ?
So your concern is cancer
No, I just don't think I can live with this 'tinnitus' . One of my doctors says sirolimus is a horrible drug, one says it is hard to get the levels right( which sounds to me he is more concerned about their ability to monitor it)and the other says she is open to try it. It is really frustrating to have three of them and I don't know which one I'm going to get from appointment to appointment! Do you have a 'team' or just one?
My tinnitus is really terrible but it won’t go. Sometimes it’s very upsetting . My approach is now to accept it and when it becomes unbearable I just sit with and accept it. There is very little that can be done about it…IDon’t think it’s a know. side effect is it ?
At Guys the system has just changed from never knowing who’s I get to just one person in overall charge.
I’m not wildly keen on this approach as I think a mix of opinions is more helpful
It's definitely listed as a tacrolimus side effect but as I mentioned before when I was taking adoport (twice daily) I once missed my evening dose and in the morning I I felt great- relaxed, calm and no tinnitus! Then I had a bit of a panic about missing the dose and took some straight away. Within a couple of hours I had it again but my doctors seen reluctant to acknowledge this as proof that the tacrolimus causes it. They really are just hoping I'll stop raising it as an issue.
Hair Loss & Anniversary.
Hair loss
Weight loss
WEIGHT LOSS
Major hair loss
