Hand stiffness does it go away with treatment?

[Gmama2]

I was diagnosed with PBC last month (stage 1) and started Urso. Assuming the Urso works for me, does anyone have experience with hand stiffness/pain? Did it go away with treatment?

I had elevated liver enzymes for 20 years pre DX. My main symptoms have been fatigue and hand stiffness where my fingers lock and it is painful to clench my fingers or hold something like a mug handle, and swelling in hands and feet. I saw a rheumatologist who doesn't think I have any other autoimmune diseases. He prescribed turmeric and glucosamine.

[Nellies47]

Hi Gemma. So sorry your going through this.

I have joint pain , espeacilly my hands, and more recently my knees and elbows. I was diagnosed with autoimmune inflammatory arthritis last may.

I dont think urso will treat joint pain, urso works on the liver.

Anti inflammatory meds or steroids help my pain, im current trying to find a immunosuppression med that i can tolerate through my rheumatologist.

I find cold packs or a sea swim soothing. Also i find if i over do things i get more fatigued and pain that day and sometimes for a few days after that too.

You will find a balance to suit you. I find a nap daily helps too. Unfortunately im off work since last Nov with my symptoms.

The PBC foundation page has great advice on coping and understanding this disease. I have to say it took me a long time to get my head around it all and to adjust my lifestyle to cope with Fatigue and pain. Be kind to yourself, this forum is very helpful and alot of people here have been very kind .

Also exercise is very good for PBC, it can be hard to motivated for it but it is very beneficial to energy levels.

Hipe this helps.

Take care.

[Nellies47 in reply to Nellies47]

Hi.

Just thinking about your rheumatologist, did you have bloods. Would a second opinion from another rheumatologist be an option for you. It would be great if you could get something for the pain. I know it can be very debilitating.

Take care

[LorraineLouise]

Hi Gemma

I too am going through the same. The Urso will not help the hand stiffness. I was wondering what medication you were put on by your Rheumatologist?Mine just put me on Imuran, but I hear there are many side effects. I haven’t started it yet. I should say that I was diagnosed with PBC back in 2016. And the stiffness and joint pain just started for me within the last year.

Thank you for your feedback I appreciate you and hope that you find something that works.

Thank you so much. And wishing you well.

Lorraine Louise

[Nellies47 in reply to LorraineLouise]

hi, i was put on plaquenil, with no improvement, then methotrexate and i was too sick , nausea too much to tolerate it, then imuran and it made me vomit constantly for hours. So back to see rheumatologist next week. My hands and elbows very sore at moment.

Hope you get sorted.

Nelly

[Gmama2 in reply to Nellies47]

Oh dear, I am so sorry.

[LorraineLouise]

Nelly

Thank you for the reply that’s what I was afraid of I was reading the side effects, of the Imuran

My worst nightmare is nausea and vomiting 😡

I hope everything works out for you.

Best wishes

, Lorrainelouise

[Gmama2]

Thanks everyone, I was just put on Urso, so I am thinking I will wait a few months to see if it is working before pursuing other medication, in case there is some interaction. The hand stiffness isn't wonderful, but it could be worse, and is manageable for a while. I think it is worse when it is hot out.

[CeeCee101]

I have just started with joint pain, hands and SHOULDERS! Thought it might be swimmer shoulder because I swim every day. Just saw sports med doc, he will try injection first. But of course realizes maybe this is PBC. Before (have had PBC for 13 years) have had bone pain in the large bones and then only when I am having a bad flare which is every 3 months or so. About a month ago I had one of the worst flares ever, and now this joint pain! Seeing my PCP again in a bit to discuss. Did see rheumatologist and will be following up but only bloodwork elevated is a couple of things that can also be the same for PBC.

[Kearny]

I had the same hand symptoms 50/60 years pre-dx. It was something to do with the tendons - tendinitis, I think. Back then they prescribed mega doses of ibuprofen. Later -my hands did the same thing. I would wake up and they would be stuck in a fist-like position. Dx Arthritis - was 19 or 20. Soaked my hands in hot water for nearly an hour each morning so I could open them. Also in hips. I was told I’d be in a wheelchair by 30. Somehow, I’ve avoided that Also - back on the ibuprofen - my “drug” of choice, until PBC.