Severe Joint Pain with PBC

[Alishav2003]

Hi Everyone! It’s been awhile since I last posted. I have been getting aches in my bones kinda like when your getting the flu. But in the past two months I am expierecing joint pain in my shoulders, & knees. I actually went to an orthopedic MD he crates and said he could only see normal wear n tear. He commented on PBC causing inflammation and referred me to a rheumatologist.

I have been living with fatigue and bone body aches but never have had severe joint pain. Has anyone else expierence this ?

Thanks for your feedback

[Ktltel]

Yep. About 4 months after I was diagnosed with PBC I started having joint issues. Both ankles, knees, and wrists. Wrists got super painful and I actually had to purchase and wear braces for 3 1/2 months. Fun. I saw a rheumatologist who diagnosed me with Seronegative RA and dequervain's tendonitis.

I've been on URSO and also Sulfasalazine (for RA) for almost a year. The Sulfasalazine has helped me immensely.

AI's run in packs. For some reason, many PBCers also have RA. Not all.... but many.

Stella ❤

[Alishav2003 in reply to Ktltel]

Thank you Ktltel! I have been on Urso & Welchol since diagnosed 6 years ago with PBC went to R MD about 2-3 years ago no RA but I will be making apt w new MD as I have relocated from Florida to NJ five months ago .

Thanks again for your support and feedback

[JoanCR]

Hi Alisha,

I was diagnosed with PBC in November of last year. I've had fibromyalgia for 38 years but it was just diagnosed a few months ago (the PBC was found in ruling out other things in order to diagnose fibro). I also have osteoarthritis. I've had joint pain off and on over the years, but ever since I suddenly had a fever and felt sick and very fatigued about a year ago, my hands have been MUCH worse. Before, they would only hurt if I bumped my fingers or overdid it. Now, they hurt most of the time and get worse quickly with use. The worst part is the joint at the base of my thumbs and they never hurt before! My wrists also hurt at times and they didn't before either. I'm a wood carver so the pain in my hands is especially annoying. The rheumatologist I saw ordered joint x-rays and my hands, among other joints, had mild to moderate damage, which doesn't explain the pain I feel. I'm sure PBC is making everything I already had worse.

It wears on a person, doesn't it?

Joan

[mjk98 in reply to JoanCR]

Omg I have the pain in base of thumb on both hands I think it's the basil joints check your vitamin D I'm on special medication because mine is so low right now I'm experiencing servere lower back pain came out of nowhere this URSO isn't helping me I feel worse on it

[JoanCR in reply to mjk98]

I think you're right about basil joints. I'm thinking of having the rheumatologist inject the two joints as he suggested. A friend had that done and she said it didn't help, but she's got RA as well as lupus. My lower back and legs started hurting after I started Urso. I checked and that is a side effect although my gastro doc said he thought it was from fibromayalgia (I'm going to try to find someone who actually knows something about this). My leg pain makes it difficult to get to sleep at times. I never had that before. Urso also made me even more fatigued and drowsy. I'm hoping it's helping in ways I can't see or feel.

My vitamin D level was checked last year and it was low even though I'd started a supplement months before. Thanks for mentioning it. I was also taking an omega 3 supplement but it didn't seem to help my joints.

[mjk98 in reply to JoanCR]

This whole thing is annoying isn't it I don't like URSO I stopped the prednisone and now my bones are hurting again last night my lower back was killing me so bad and acid was coming up when I was sleeping I took my pantazole 40mg it didn't really help I feel better today about 2 years ago I had two cortisone shots in both thumbs base of my thumb and it did help for about 6 months but I use the computer a lot if it helps you for 6 months it's worth it right I believe I got this all from when I had pneumonia in December 2014 hospitalized and they gave me Levaquin for about 3 weeks two weeks of pills prior to hospital and one week intravenously and then my liver enzyme started to rise because even in my liver biopsy it said not ruling out drug-induced Levaquin affect the liver I asked my doctor of course he says no but where else did this come from I very rarely ever drink it's just so ridiculous I'm still itching like crazy so what is URSO supposed to be doing for us

[JoanCR in reply to mjk98]

It certainly is annoying. There's no getting away from it except in sleep. Thanks, that's good to know about your thumb joints; I think I'll give it a try. I can't pinpoint anything that may have started my PBC. It's horrible to think that a drug could have started it for you. If that's what it is and not PBC (I don't fully trust any doctors anymore), is it reversible? From my understaning, Urso is supposed to help the bile continue to flow freely through the ducts to prevent scarring and other damage. You'd think it would help with the itching.

[KevinHall10_ in reply to mjk98]

It sure does, today was the worst in a while. I almost went to the hospital, but instead took some medicine to help the pain. Checked my sat% that w a s 85, so i put the good ole o2 on. I am so tired of being sick. I go to the gym and swim, but daus like today, forget it. I just want to be left alone, how sad is that.

[Alishav2003 in reply to JoanCR]

Thanks for replying Joan. I was a healthy energetic person 6 years ago developed a high fever rash over entire body. Liver counts off the charts like someone who drank a 5th of hard liquor daily ( I don’t drink). My health went off the rails from there. Every time I accept my new condition another arises, yes it does affect ones spirit. But today is new. Just for today I can try

I wish you well

alishav

[JoanCR in reply to Alishav2003]

Yes, one day at a time. I wish you well also.

[Biddyb]

Hi, I have bad pains in my hip joints, mainly at night and have to stretch out in bed, l also do several exercises which eases the pain I also have arthritis in my hips so I guess it's half that and half PBC pains. I do a stretch class too which eases the discomfort according to the instructors it helps to keep the joints lubricated by moving !!! Each day something else seems to appear it would be wonderful to have a good nights sleep and wake up refreshed I think those days are gone. Some mornings I feel a dread on waking that something awful will happen, not sure if that's part of PBC or the cocktail of drugs taken, anyone else felt this?

[JoanCR in reply to Biddyb]

That happened to me today. I've been having strange dreams since starting Cymbalta for fibromyalgia and seem to dream right before I wake up. I think I was dreaming about all of the things I wanted to get done today and that gave me a feeling of dread. Otherwise I normally don't feel that way upon waking.

It gets hard to tell what's causing the pain after a while. This condition, that condition or maybe it's this drug or that. I too would love to wake up refreshed.

Stay strong!