Severe post transplant sweating

[KerryBMarino]

I just received my kidney on April 17th, 2021. The sweating started immediately. The donor was Hep C positive and I’m currently 1.5 months into treatment for it. I’m on Tacrolimus and the levels have been fluctuating wildly. I was requiring a boat trailer the last 2 days, not that hot in Ohio yet. Shirts, underwear and shorts get soaked within an hour.

[Jepsos]

I had my transplant April 05, 2022. I had horrible night sweats for about 4 weeks starting 3 weeks post transplant. I was going through 3 pairs of pj’s at night and had to change my sheets daily - so gross. Thankfully, the night sweats have mostly resolved. It only happens once a week or so. I’m on 7mg of Envarius (Tac), but my med change has been up and down (as high as 10mg and as low as 6mg). I was able to stop Prednisone after week 6.It’s definitely the meds. Hopefully, once your meds stabilize more the sweating will get better.

Good luck!

[KerryBMarino in reply to Jepsos]

Thank you for your input. I used to sweat a lot before full blown renal disease but this is definitely different. I hope it resolves. Down to 10 mg of prednisone, Tac levels have gone sub therapeutic to off the charts. Seems to be leveling off a bit now. Issues now include blurred vision and really shaky hands while I’m doing things like working on my boat and retiring the trailer.

[Jepsos in reply to KerryBMarino]

I had blurred vision, too. It is a side effect of Prednisone. At 5mg, it seemed to get better. The sweating and joint/bone pain have been the worst of the side effects for me. I’m glad the sweating is much less frequent, but the joint and bone pain is really horrible. I have more energy prior to my transplant, but the pain has me doing activities only every other day - garden for a day and then rest with a heating pad and Tylenol for a day. It’s been quite limiting.

[KerryBMarino in reply to Jepsos]

Crazy thing is that I was frequently on prednisone prior to my transplant because I would get frequent gout flare ups to the point of being hospitalized because every joint was affected. Which med do you believe is causing joint pain? I’m sorry to hear about that. My energy suck due to Hep C from the donor and Epstein-Barr virus that a sister brought home when I was 12. In case you don’t know it, EBV causes mononucleosis. In my head I should at least be running half marathons by now but I feel zonked.

[Jepsos in reply to KerryBMarino]

I tested for positive antibodies for EB and CMV. I must have gotten both viruses as a child. My Nephrologist tests me regularly for both to make sure they remain dormant.I believe the Envarius (Tacrolimus) and Myfortic are causing the joint swelling and pain.

[WYOAnne NKF Ambassador]

It probably is due to your meds. Make sure you tell your transplant team about this side effect. They may be able to reduce your dose of your meds. They can't help if they don't know about it. One word of advice is to stay in touch with your medical team and make sure you let them know any problems or issues. I will be 23 years post-transplant this October. Being my own advocate and reporting issues to my nephrologist has helped me to be living well for all of these years

[KerryBMarino in reply to WYOAnne]

We are trying to reduce meds but my Tacrolimus goes from sub therapeutic to off the scale still. Have reduced prednisone to 10 mg from 60 mg and mycophenolic acid to 3 of the 180 mg tabs from 4. Trying to get the Epstein-Barr virus I was exposed to at age 12to go back into dormancy. Also on Epclusa to deal with Hep C that the donor had. I knew donor was Hep C+. On the flip side, I’m 56 and got a 28 yr old kidney.

[WYOAnne NKF Ambassador]

Just so you know - I take Neoral (cycloporine) 3-25mg tabs BID and Myfortic (mycophenolic) 1- 360 mg tab BID. So, it seems like you are on a high dose of mycophenolic. Let your team know about your intense sweating and maybe they can lower the dose of your mycophenolate.