Post Kidney Transplant

[Zbiguy]

I had a kidney transplant 1 1/2 years ago it took over a year for all my numbers to stabilize to normal. Now I have achy joints and muscles everyday mostly shoulders. Don’t know if it’s the anti rejection drugs or just old age. Never had these issues prior to transplant. I’m an active 64 year old male once I get moving it seems to get better just start everyday aching anyone else have these issues?

[viviselphie]

Steroids can cause joint pain which I find ironic.

I have autoimmune joint pain that has been better because of the anti recjections.

[Darlenia in reply to viviselphie]

My hubby has a transplant but hasn't had any joint pain or pain issues. On the other hand, I have osteoarthritis and, during a bad flare, was put on prednisone for a short time. My bones stopped hurting, my finicky stomach (IBS) straightened out, and my chronic sinusitis disappeared. I thought I'd died and gone to heaven. I, speaking only for myself, would love to be on a small dose of prednisone for life.

[Zbiguy in reply to Darlenia]

I’ve taken prednisone too love the stuff all my joint pain goes away. Drs say long term is not recommended due to bone issues. I sure feel great when I take it gotta ponder it. Congratulations to your hubby it’s a wonderful thing.

[Darlenia in reply to Zbiguy]

I personally wonder if it's the tacrolimus, not so much prednisone. A liver transplant friend of ours has severe bone issues requiring multiple surgeries to keep him going. He's exclusively on tacrolimus (nothing else), at triple my hubby's dose. He's had his transplant for 16 years. He matter-of-factly notes it's a tac side effect.

[Zbiguy in reply to Darlenia]

I agree on the Tac but they don’t want to mess with it.

[Herewegoagain12 in reply to Zbiguy]

I've been on tac since I got my new liver 8 years ago. I have so many severe side effects I'm barely able to leave the house. Achy all the time, shoulders, neck, right hip. I've developed kidney disease, now stage 4. My blood pressure spiked, now controlled with Amlodipine. It has also caused me to lose control over my digestive system. I'm tired of it all. I finally got an appointment at Mayo clinic in August. I will be asking to switch to another immunosuppressive. If they can't fix me. I will be headed to hospice where I will voluntarily stop taking the tacrolimus. I hope you're able to get better care than I've gotten. I've been tossed from doctor to doctor. Oh and watch not only bones density, but watch your teeth Tacrolimus can also cause them to die and fall out.

[Zbiguy in reply to Herewegoagain12]

I was gonna say they have other drugs besides Tac. My nephrologist in Florida put me on Co Que 10 an over the counter pill that helps some and not others it’s been months now and it maybe better but still not gone. My aches and pains get better as the day goes on but start all over in the morning. He’s the only Dr yet to tell me it’s from the Tac. The ones at the U of M just ignore you when you mention it their only concern is your numbers.

[viviselphie in reply to Darlenia]

I hate being on it for life. It causes weight gain in the face and body. Can strip your bones. Among other things.

But yes, I agree: pain relief is nice. I can def understand wanting whatever will make the pain stop. That's why I find it ironic that it can cause some people to have issues.

[Darlenia in reply to viviselphie]

It think it's a bit difficult to tease the various autoimmune suppressants apart and identify specifically one for all problems. I sense they're all in it together, some more than others, but work similarly and all contribute to symptoms - tacrolimus, for example, is well known for weight gain too. Prior to 2000, prednisone was administered at an extremely high dose...but since new transplant drugs were developed, prednisone use has been scaled back significantly. Interestingly, my hubby, who does take a little prednisone, continues to be slim and has no moon face. On the other hand, it's ramped up his diabetes big time, but the other drugs contribute to that too, although less than the prednisone. They're all rather similar. To see our friend, only on tacrolimus, struggling to get around drove that message home for us. They're serious drugs. It would be wonderful if all transplants required no immunosuppressants at all. That would be a win for everyone.

[Zbiguy in reply to Darlenia]

Weight gain not an issue for me trying to gain weight. Lost 15 lbs after transplant mostly edema I imagine. Can’t gain a pound now

[Darlenia in reply to Zbiguy]

Same for my hubby. He doesn't put on pounds either. I also think a well functioning kidneys contributes quite a bit to that.

[allene7]

So sorry to hear about your joint pain and muscle aches. I would check with your doctor. I have aches and pains as well sometimes, but my cause is rheumatoid arthritis and some osteoarthritis as well. I'm not saying that's what you have because it could be so many things.

Absolutely check with your doctor maybe it's a medication or something along those lines.

Congratulations on your new kidney.

Best of luck to you.

[Jayhawker]

I’m 19 months post transplant. I’ve experienced a lot of joint pain and achy muscles post transplant—none before transplant. It’s my shoulders and my right ankle. Frankly, my shoulder pain has been pretty intense and my range of motion is significantly reduced in both shoulders.

The transplant center says this isn’t related to the anti-rejection meds. However, I see several studies investigating this sort of pain and onset of arthritis post transplant so this has to be “a thing” or it wouldn’t be the focus of so much research. Plus joint and muscle pain are both listed as possible side effects of Tacrolymous which should be reported to your transplant center.

My tacrolymous levels have been pretty stable and in target range so the transplant center does not think my joint pain relates to that med… Regardless, this is new for me and it’s onset correlates strongly with the start of the anti rejection meds.

I’m working with a PT at this point to try to minimize the pain and increase range of motion. I’m also going to see a rheumatologist in September to see what she thinks about arthritis. At a minimum I’m hoping for some guidance regarding how to manage this pain.

Jayhawker

[Zbiguy in reply to Jayhawker]

Hey Jaywalker

We sound like two peas same issues mostly shoulders. I golf a couple times a week and that motion isn’t affected but trying to pull on anything hurts. All Tac numbers are perfect so yes they basically say deal with it. Prednisone works really good to reduce the pain but they don’t like us taking it long term. Gotten cortisone shots in shoulders that works for a little while too 6 weeks or so. My feet also hurt sometimes like there bruised but there not more Tac side effects I’m sure. All in all beats the alternative the transplant saved our lives.

[Jayhawker in reply to Zbiguy]

I agree that the transplant is a life saver. I had just hoped for better quality of life post transplant. My body isn’t doing well with these anti-rejection meds, unfortunately. Of course many others have less difficulty with the meds. I keep hoping my body will adjust.

Jayhawker

[oceansplash]

I haven't had a transplant but I developed achey bones/joints, sinus swelling and stomach issues from losartan. These side effects would last a few weeks, calm down and start back up occasionally. I'm 63. I'm still on it because of proteinuria but it really interferes with my day-to-day function. Doctors don't care. So I suffer. It's the only med I'm on.

[Jayhawker in reply to oceansplash]

I used very few meds pre transplant so my body hasn’t had to adjust to many meds. I suspect that is part of the issue. Also, some people’s bodies just seem to have less trouble than others. However, it does seem that many doctors are unresponsive to medication-related issues. I’m not sure that would be the case if they actually had to live with some of the side effects some of us experience.

Jayhawker