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Liver transplant - Let's support each other

Transplants | Last Active: Jun 7 7:51pm | Replies (1594)

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@jws10

Hi all,
I am 35 year old female, 4 months post transplant. I am very lucky in that everything is going very well, no complications, little side effects, taken off Prednisone after 3 months and my other meds are in low doses.
Other than hair loss and acne (both of which are improving) my greatest concern is joint pain and stiffness. Bone density is normal. RA negative. Never had this problem before and it's getting worse. After sitting for 15 minutes I feel like a cripple trying to stand up. Getting out of bed in the morning is the worst?
Anyone else have a similar experience?

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Replies to "Hi all, I am 35 year old female, 4 months post transplant. I am very lucky..."

@jws10, I am happy meet you and to welcome you to Connect. Organ transplant is a beautiful event, and I wish you many happy healthy years to come.
I have lived happily for 10 years with my transplanted liver and kidney. I had to take prednisone after my transplant surgery at a high dose, and it was tapered to a lower dose (5 mg) within the first couple months. I do not recall any difficulty with it. However, due to the kidney's needs, I remained on the 5 mg dose for several years, and still no problems. Then I was given the directions to taper off the prednisone and I had to take it slowly. At first a tiny reduction of 5mg to 2.5 mg daily caused me stiff and painful joints, and made me feel yucky for nearly a week. Then my drop from 2.5 mg to 0 mg did the same thing to my body - stiffness, aches and pains. Some stretching and gentle exercises helped, and I was permited to take tylenol. It was my PCP who suggested me to taper to every other day then every third day...And that worked the best for me when I was at 1.25 mg. (Yes! I did cut those tiny pillsinto 1/4)

I would encourage you to contact yout doctor because, all medicines, especially for us transplantees are specific to our individual needs. And they can affect each of us differently. Have you mentioned this to your doctor? What did you find out?

@jws10 im not sure mine is the same reason due the fact im 60 but i do have some joint pain and stiffness after sitting to long or sleeping. Mostly in one shoulder and my hand knuckles but it seems better once i get up and moving. But still don't know if its just old age or due to my transplant meds. Im 2 years post heart transplant next month so ill mention to my team. I do remember more pain back during my first 6 months but mainly from the cheat incision. Not so much joint pain. My biggest problem then was just overall weakness from being in bed too much prior to transplant. But talk to your drs for sure.