Hey Guys . I am a 71 y/o male who had a transplant on December 24th. I am on prograf,cellcept and prednisone . I have developed severe back,hip,knee pain and quad muscle soreness. I have told my team but they have not addressed this. Has anybody else developed these problems and did your team give any advice ,suggestions or changed meds.
Thanks
I’m sorry to hear about your pain. Do your labs show anything? What’s your Vitamin D show? Magnesium? My case was different. At about six months I started having vomiting episodes which eventually I ended up having an endoscopy for stones and my gall bladder was removed when I was 68. I just past my two year milestone. Your meds will be adjusted usually after labs… I’m on prograf, mycophenalate, Vit D, Magnesium, and the rest of my meds are for my parathyroid (cincelet) thyroid (Levothyroxin) blood pressure (carvedilol) cholesterol (plavastatin), famotidine (reduces acid in the stomach), Metformin ( blood sugar) . I just turned 70, and feel blessed every day despite 20 meds a day! I hope they find the cause of your pain.
I have had terrible chronic pain in my lower back for over 6 months. I mentioned it to my team but nothing.It’s now at the point where it is taking over my life! My son a physio had said he thinks it could an emotional response to the recent traumas I have experienced as well as my transplant .
I’m convinced it’s the drugs , I blame it on prednisolone without knowing why.
I will push the team to see if they have any experience of this. Going in in next couple of weeks . I’ll let you know if I hear anything .
Prednisolone actually is an antiinflammatory known to decrease pain so it is unlikely from it. Have you had imaging done to see if you developed any bone/spinal related issues?
Hi Lisa I was going to and then couldn’t face things if there was a problem !
I think knowing what causes the pain is only going to help. It is unlikely to be anything frightening. Knowing the root of the problem will lead to most appropriate treatments. Please don't suffer in the dark and get the test your doctor recommends done.
Arghh ! I guess I should
Booked tomorrow 8.00 pm. Thank you Lisa. When at a low ebb decisions are hard to make .
I understand. It is hard to be in pain, pain can eat away our spirit. I hope the imaging will reveal where the problem is so the doctors can give you the best therapy to recover. Hang in there!
Also 71 and experienced hip pain. Went for an x ray and it was hip bone deteriatiom due to aging. Would emphasize as others take supplements, eat healthy and walk. You might want to get a second opinion with a bone doctor.
Sorry to hear that! I was having allSorts of pain , back, knees, ankles, hips. I’m on the same meds. The last 3 months I started lifting light weights 3 to 4 times a week and Thank the good Lord, the pain as gone away!! My Drs said it strengthened muscles and helps the bones. Hope this could help!
It did. I so appreciate you letting me know your experience .
Congratulations on your recent transplant! Since your surgery is pretty recent your body is still recovering from the trauma associated with it as well as adapting to new medications. It is actually normal to feel "out of sorts" for the first year or two. However, if your pain is confined to specific region of the body and doesn't get better despite daily gentle activity (taking a walk everyday is highly recommended), I would push for additional diagnostics from your transplant team so they can determine if there are any new issues. Stay well and congratulations again!
Thanks for your reply. It is definitely encouraging to hear from you. I am going to the gym everyday and using the elliptical for about 1 hour a day. Hopefully it will help.The reason I know it has to do with the meds is last week they took me off of cellcept from Thursday until Sunday and increased my prednisone from 5 to 10 mg the same time. When Sunday came around to restart the original doses the pain and muscle soreness was gone . Since restarting the meds all of the above has come back . I called again today to the transplant team and as of now I have not heard from them.
Sounds like increased prednisolone helped with pain which is expected if the pain is causing inflammation and vice versa. What was the reason for them to change your medication only for 3 days? Typically they do not decrease steroids from 10 back to 5, it needs to be a slow taper.
Lisa They stopped the cellcept because my wbc went 2.1 and the norm is 5-11. They had me take nightly a injection to increase my wbc and when it was checked Monday the count was 25,000. I had been on just 5mg of prednisone for a couple of months and the 10 mg was given to me Friday and Saturday and started back on 5 mg Sunday.The prograf was still on the high side . I am taking 3mg in the AM and PM. Before this when I left the hospital I was on 5mg twice a day ,then 6-5,then6-6 ,6-7,then 7-7 and then started titrating back down to 2-1 and then way to low. Then we started titrating up again.3-2 was to low and now 3-3 is to high and so they said keep taking the same I was taking and we will check every thing next week. I told them that this was very confusing and when I have blood done even though it is on 3rd day when I get results. I told them yesterday they were really slipping on keeping up on my results and keeping me informed.
Thanks for asking though.
They are taking good care of you by adjusting your doses . The repeat measurements of trough levels (tac) and your CBC let them know if the medications are metabolizing at the correct rate so you are neither over or under treated. The thing about our body is that it takes time to normalize its relationship with new compounds, just like dating! It is totally normal to have nonlinear relationship between dose and trough level within the first six months so don't worry about the constant adjustments. I believe you are in good hands!
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