Over fatigue feeling plus tremors on hands

[Artsygirl66]

since my transplant almost 2 yrs now, I haven’t fell well. At some point after a year, I felt so weak I had to take a wheelchair at the airport. I still couldn’t take long walks . Grocery shopping is almost impossible. I can only walk a few aisles and I will be so fatigued that I feel I will collapse. I discusses this with my doctor and he said it’s probably from my meds like advagraf-tacrolimus. I also got the BK virus from the transplanted kidney and my levels are getting higher. Is anyone else experiencing this? Also, I started losing my hair which is depressing as well.

[LisaSnow]

I am so sorry to hear of your struggles. Sounds like your transplant is doing well though. Hair fallout is very common after any major surgery and they usually fall after three months of the event. They will grow back if you eat a proper balanced diet. The tremor is a common side effect with tacrolimus and will also.improve once your dose is being lowered. Please discuss with your transplant center if any side effects interfere severely with your daily functions, they may consider other medication combination for you. Please be patient and know it will get better. The severe fatigue is somewhat unexpected at two years out. Do you still suffer from anemia? Were you able to start walking daily a month out from.the surgery? The thing with our muscular skeletal strength is that if you don't use it you will lose it. If you can find a physical therapist to help you build an exercise protocol and if you do practice it daily, you will build your strength back up. When you have the minimum muscle strength back you can take walks daily and make the walk longer each day. This plan will definitely help you with your physical weakness and soon your fatigue will improve. Of course always discuss with your transplantation team first. For physical therapy referal you may need to get it from your GM.

[Balap]

I'm sorry to hear about your fatigue. BP medicine caused fatigue for me

reduction in steroid dose can also cause fatigue

[Hidden]

Hello Artsy! LisaSnow gave some excellent advice. So, I am just here to empathize and share my experience. I received my transplant 8 months ago yesterday. I have been plagued with viruses almost continually. BK virus takes a long time to get rid of. In fact, it was decreasing, then increased in February along with another virus arriving on the scene, CMV. Both took up residence in the transplanted kidney. Most recent bloodwork shows it has decreased. I was lethargic, but nothing like what you are going through. I am better now, after spending 2 weeks in hospital. I told docs at the time, I should feel a whole lot better than I was feeling in February as I was also dealing withe nausea etc . I would demand that they examine your situation more closely to get to the root cause. Maybe a drug change is in order. If I don't eat healthily, I feel it. As for tremors and hair loss, I am going through the same thing. Tacro is associated with the tremors. For BKV, the only real treatment is a decrease in immunosuppression drugs. Mycophenolate was completely dropped for me and my Tacro ranges between 2 and 3 mg, depending on my bloodwork results. I also take 7.5 mg of Prednisone. It's a balance game between getting rid of the virus and keeping the transplant. Sorry for the long text. I hope I have said something that resonates with you. Best wishes.

[Bunkin]

hi there! I too have extreme fatigue 2 years out in February. It has gotten worse since end of last year I think. I also have extreme joint, muscle and nerve pain. I have researched pain caused by Tacrolimus which is supposed to be detected by MRI which I had done and apparently showed nothing. 24 hours a day I hurt. The neuropathy in my feet has gotten worse. However I feel if I could get past the fatigue I could do more and get my strength back up. Prednisone has caused weight gain and I’m doing all I can to get tvat off. I read that some bp meds cause more fatigue than others and of course I’m on one of those. My appointment is next Wednesday and I’m going to ask him if we can change the bp med. I tell them every time of my problems but they never do anything. If I don’t get some help this time I will be looking for another nephrologist. I’ve been to pain management, who want to give more steroids, PT, didn’t help, I plan to go to neurologist when I find one and see what they say. I don’t know if it’s the meds or something they did in surgery as it started the month after surgery. We have to keep looking for answers! We’ve come too far not to😊

[peregrin]

After much prodding, my nephrologist switched me from tacrolimus to everolimus. My tremors (and slight headache) went away after a few weeks.

[ness9840 in reply to peregrin]

Did your nephrologist explain why the hesitancy to switch?

[peregrin in reply to ness9840]

I think it was a matter of "if it ain't broke, don't fix it." My new kidney was doing fine with my mix of meds, so why take the chance of switching. I may be wrong, but it seems to me that transplant centers may be more worried more about their transplant rejection rate, than their patients' general well-being.

[LisaSnow in reply to peregrin]

I think it also depends on how far patients are out from the surgery. Generally speaking twice a day regimen of tacrolimus is preferred for the newly transplanted patients.

[peregrin in reply to LisaSnow]

I think that post-transplant doctors tend to treat the transplant, not the patient

[LisaSnow in reply to peregrin]

I used to feel the same way. But I am a lot less cynical now because the truth is, losing the transplant is a lot more fatal and consequential compared to side effects from medications which most of the time are reversible. Once rejection process happens often it is a lot less responsive to treatement, and if patients lose it, the required dialysis and the stress of another transplant (if lucky) will guarantee to take years off patient's life and rob them quality of life. Individual patient often knows and cares only about how they feel at the moment and do not sufficiently appreciate the big picture. Transplant clinicians see hundreds of patients in different stages of their journey and understand the consequences much better. It isn't always easy to appreciate clinicians' hard work or limited solutions they provide when one doesn't feel well, but it is important to try.

[peregrin in reply to LisaSnow]

It's not a black and white issue. It is certainly possible to treat both the transplant and the patient.

[Jayhawker in reply to LisaSnow]

I couldn’t agree more with your comments. I’m typing this while experiencing severe bone pain from neupogen injections they have prescribed to deal with very low white blood cell counts. This bone pain is without doubt debilitating; however, the goal right now for both my transplant team AND myself is to protect the donor kidney. The kidney continues to do very well. I’m so thrilled and thankful for that! (eGFR 70-72 with all other data, except WBC count, in the normal range.)

I do talk with my team about symptoms primarily to get guidance regarding symptom management. Also, this stuff is so complex; I never know what new symptoms may be critical for them to hear. So, I error on the side of caution and tell them every new ache or pain I experience.

These meds do cause various side effects. Plus my body responds differently with more renal function. It’s a process adjusting to these changes. While there are trade offs with any treatment we choose, I would again choose a transplant as my first treatment option in spite of the medication side effects I’m currently experiencing, thus I am committed to finding the best ways to manage the side effects I experience. I try to work together with my transplant team to achieve that goal. Regardless, we’re each focused on the health of the donor kidney—that’s our priority.

Jayhawker

[shash8363]

Sorry to hear that. Talk to the transplant team about tremors. I have been on once a day Envarsus (slo release) instead for twice a day prograf. My doc said that it reduces tremors (and you dont have to worry about forgetting it since you take it only once). Even with Envarsus, I had tremors in the first 2 years of my transplant- but manageable.

Fatigue- ask the docs to do a full test. I had hypothyroid after transplant that made me feel fatigued. Once this was figured , I was put on the right medication and fatigue went away. Also ask them to check vitamin D/B12 levels if they have not already done so.

Are you also on mycophenolate?

Hope you feel better!

[BabyTee]

The fatigue and hand tremors might not be related.

I was also switched to Envarsis. When I switched, my intermittent hand tremors went away and my hair stopped falling out as much. I was switched at about 4 or 5 months, because it was interfering with work. I type for a living.

I also agree they should check your vitamin D/B12 levels, and Iron to make sure that isn't part of your fatigue problem. Wouldn't that be a blessing if that was the case.

The other thing that helped with my hair loss was Youtheory Collogen plus Biotin tablets. I take 3 per day, but I started with 5. If you are not getting enough protein, then these might help with hair loss. Lack of protein in your diet can cause hair loss.

If you aren't exercising enough, there are some "lazygirl" workouts (youtube) that you might be able to do while you are laying down or standing. Any extra movement will help maintain muscle mass.

[Transplant37]

sorry to hear you dealing with this. You are getting the same advice I would offer about being vocal about your side effects. Envarsus is a game changer for me. It is a better formulation of tacrolimus that allows it to be time released and therefore metabolizes better. You don’t get peaks and valleys so they can reduce your dosage overall. This reduces the side effects.

[Bunkin]

I’m over 2 years out in February. Still have fatigue plus joint, muscle, nerve pain. Haven’t figured the cause yet

[HSP1965]

Me too 😟

[TaffyTwoshoes27]

Hi Artsy:

I try to read on these medical websites about what the BK virus is where it comes from. It makes me respect doctors, PAs, RNs, etc. more because I don’t understand what it’s saying. I do know that the nephrologist tested my hands for shakiness several times when returning for follow-up appointments to the transplant hospital. I didn’t have any shaking. My BK virus results always come back negative, so I’m sorry I cannot help, although to say that I too suffer from some ongoing fatigue (14 months after transplant) and weight gain.

Hang in there! I’m looking into finding an Endocrinologist. Several transplant, patients I know see one because of the different medication’s, and how it affects your glands and other issues.

Don’t give up!! Be kind to yourself. Some of these symptoms may ease as your body adjusts to the meds.