Joint Pain after Organ Transplant

Thank you so much for share this information.

@grateful 76,
I also experienced joint pain and body aches when I was tapered off prednisone. I needed a slower taper, and that helped ease the discomfort. Each of us reacts differently.

Are your doses of prednisone being reduced from the high dose that you were taking immediately after transplant? Have you mentioned the joint pain to your transplant team?

Thank you @rosemary.
I’m 7 months post and prednisone was tapered almost 5 months ago. I had no issues until June. Mostly arms, shoulders, fingers pains and sometimes very severe. My transplant team tested magnesium level but it was normal. I’m not sure why this is happening now. Currently I’m taking Tacrolimus and Fluconozole medication. Is it possible to be a side effect from these medications? Any suggestions are appreciated. I wish you a beautiful day! Thank you!

Thank you for sharing. So sorry about diagnosis. I wish you pain free.

Exact same thing happened to me after weaning off prednisone (my post is in this thread). I’m now back on 5mg prednisone a day as of 8/8/23 for a month, and then I will taper off and see what happens. How many months post transplant are you? Are you still tapering off or are you finished with prednisone? What are your results overall or are you still in the process? Sorry for so many questions but am so eager to hear/fix/spread the news about joint pain post transplant. IT’S REAL! Thanks so much!

I'm 43 and had a pancreas transplant 22 months ago. I had never had joint pain prior to my surgery, but have had horrible knee pain in both knees for close to a year now and both feet for almost 6 months. I was on 200mg cyclosporine (instead of tacro) 2x daily, but down to 150 2x daily now. Joint imaging has looked normal & did some PT, but my joint pain remains about the same. I'm also pretty skinny and was very active prior to joint pain. I really think it's the immunosuppressants causing it. Has anyone had similar experience or have some good advice?

I want to bring this support discussion to the forefront and ask if anyone has an update to share.

I also want to invite @nrbecerril, @xplantguy1212 - to join this conversation with others who are also experiencing the same kind of post transplant pain issues.

I'm really late to this conversation. I was in the middle of having my cataract surgery and I simply couldn't see clearly.
When I had pain as I previously mentioned, it was due to my prednisone taper. It was approved by transplant team, but it was my PCP who was able to guide me thru an extended slower taper. My current aches and pains are due to 'not being 50 anymore' according to my PCP.

Some of you have mentioned medications and I was reminded recently by my son that one of his fire crew had been experiencing joint pains that were not normal for him. Eventually his PCP changed one of his blood pressure or cholesterol meds (I don't recall which it was) and it worked to relieve the pain. It might be something to mention to doctor, just in case this is how you are reacting to another med.

@mfilson, @muddlycrew, @jovanna, @juli175, @johnnybroom -
Have you had contact with your doctors and found any remedy for your painful joints? Are you still able to be off prednisone? What is helping provide relief?

@nrbecerril, @xplantguy1212 - Will you tell us a little about yourself and the pain you are experiencing. What would you like to ask?

Good morning, I hope everyone is enjoying this beautiful Saturday morning. I still have issue with my joints, 10 months post the transplant. My pain is mostly concentrated in upper body. Left hand fingers to the point I can not close my hand or bend fingers. Shoulders are very painful and can not raise my arms or move in certain directions. Stopped using Prednisone 6 month ago and currently taking 200mg Fluconazole and 4mg Tacrolimus daily.

Good Evening.

I am now almost 6 months post LT and my joint pain is significantly better. But not due to “time” alone. I am on 4mg Tac 2x per day (amongst other meds) which hasn’t changed much, and I strongly believe the Tac is the culprit of my joint issues. Like I said, I believe time has helped, but not time alone. At all.

1) Prednisone - I was put back on 5mg prednisone late August and am doing a very slow taper. I am now on 2.5mg and will taper to 1mg and then zero in next few months.

2) Sugar - I decided to eliminate sugar from my diet. Not carbs, just sugar. I’ve known for a long time through my Keto experience/education the negative effects, such as SWELLING, that sugar has on my body. I’m not Keto now - I eat tons of veggies, fruit, quinoa, rice, protein pasta, etc. And please don’t get me wrong - I do have a sweet tooth. And eliminating sugar is hard and takes determination and will - but it is soooo worth it. So I curb my sweet tooth with sugar-free candy/ice cream NOT sweetened by aspartame or saccharine, but with sugar-alcohols. My favorite sugar alcohol is erythritol (I cleared sugar-alcohols with my transplant team -specifically the transplant dietician and hepatologist). There are lots of ready to eat sugar-free chocolates, bars, hard candies, etc. available (check out pharmacy aisles), some bakeries
Offer keto cookies/brownies/cakes, and additives are available in the baking aisle (Swerve is my fav sweetener and I have Swerve sugar, brown sugar and powdered sugar).

3) Collagen - I am just ending my second month of a collagen supplement (I am 55 yo), also cleared by my transplant team. Mine has all 5 main collagens (I, II, III, IIII, X) from 4 food sources (bovine, chicken, fish and egg shells). The collagen I use has no other ingredients. Zero. I did lots of research! It might be psychosomatic as my liver doctor wasn’t sold (but remember, he cleared it), but I believe it’s working. (Side benefit, helping with my hair loss, too.)

4) Salt/Water. I keep my salt to no more than 1200mg daily (FDA is 2300mg daily). I drink at least 100oz of water a day (well, most days). This combination keeps me hydrated and any edema to a minimum. Also good for blood pressure! There are many, many ways to cook tasty meals without salt. Or sugar.

Thanks for reading if you made it this far. This “program” of mine and my doctors has worked for me so far, and I no longer wake up unable to walk or open my hands. And I didn’t sacrifice good tasting food. I got creative and asked my favorite restaurants for tips. Yep! Went in to the kitchens of a few. Also, I Googled many recipes. So many apps out there, too, that tailor to any kind of diet.

I wish all of you the best and thank you all for the unbelievable support and advice I’ve gotten. Also, knowledge is power and this group is the definition of knowledge:)