Pbc joint pain

[Ballgrl]

Does anyone get joint pain from pbc or is it from taking the urso.Also would like to know about any experience of getting reflux after taking urso for 3 years.

[4pjx__]

I have joint pain. I know I do have some arthritis in my hips an knees...so, not really sure which issue is causing it.

[jane1964]

Hello I have had joint pain from the beginning I put up with it as for a long time rheumatologists couldn't find anything but eventually I found one able to help and as well as PBC I have sjogrens and vasculitis I am on treatment now and feel much better so I suggest you ask to see a rheumatologist as it may be something they can help you with.

[kandiepat in reply to jane1964]

Hi Jane1964, Im exactly like you! there is a years waiting list for a Rumy doc here in Ireland.

Can I ask what your rheumatologist gave you? I went to the doctor yesterday about pain behind my shin, even to the touch. She said wear support stockings and moisteurise. But I looked on the Sjogrens site and vasculitis is all part of it. I think Sjogrens caused my pbc and according to the Sjogrens site pbc is indicated in the list of symptoms. Big Hug, keep going. Kandiepat

[jane1964 in reply to kandiepat]

Hello I have seen 4 rheumatologists from 3 referrals one from my GP over 10 years ago when the pbc was diagnosed, then later from liver consultant then finally again from my GP the final time I was seeing one rheumatologist for nearly three years getting worse and worse until their colleague took over and then finally got some treatment, a steroid injection helped a lot and now I am on hydroxychloroquine and azathioprine this combination has helped a lot and I have been very lucky to have no real side effects.It was only when I got treatment I realized just how ill I had been I really hope you don't have such a battle to get help.I found keeping a record of my symptoms with photographs of anything visible such as rash , red eye swellings etc was what helped the most.Good luck for your appointment.Jane.

[iagra]

I have stiffness and pain in joints, and also acid reflux, which started well before I was diagnosed with PBC and started taking URSO. So, no, not in my case, PBC and Urso are not responsible for my other problems.

[Yankeerose3 in reply to iagra]

IDk I always heard PBC causes joint pain. Maybe you had PBC longer than you know. That happens a lot too

[Yankeerose3]

Many post talk about joint pain going along with having PBC and reflex too. Best to let the dr know

[Michi1]

Most autoimmune diseases are associated with joint pain. I had joint pain for years before my diagnosis and since both my grandmothers complained of joint pain fairly young, I assumed it was just a normal part of aging. Then I went on a healthy weight loss and exercise plan, lost 35 pounds and the joint pain went away. I’ve found as long as I stick to an intiibflammatory diet and exercise, the joint pain stays gone. Lots of veggies and some fruit, fish, meat, chicken, healthy fats. Very low sugar. The exercise is key. I do half hour workouts at home and if I stop for a few weeks the joint pain comes back.

[Twinkle26]

Hi I’ve had joint pain for a long time on and off. I’ve had tendinitis in both knees my elbow and undiagnosed foot pain. Still being investigated but currently having physio, sick of it 53 going on 80

[DrDizzy in reply to Twinkle26]

I feel just like you! Walking is very painful. Prednisone was helpful, but I hated all the side effects

[ninjagirlwebb]

If I carry heavy groceries, joints in fingers hurt. When I exercise too much knees hurt. Have had achilles tendon, elbow & wrist pain. However orthopedic doctor says, it is overuse.

I have scalp psoriasis & dermatologist mention to me that there is also a condition called psoratic arthritis so that I am aware.

Don’t think this is pbc related. I had issues since my early 20’s. I went to a rheumatologist back then & there was nothing.

No acid reflux. Make sure you take urso with food. That is what the directions are.

[SunnyXXOO]

I don’t have joint pain, but I don’t take Urso. I do use Alpha Lipoic Acid IV, my finger joints do get a little sticky for short period of time, that’s it.

Commonly reported side effects of ursodiol include: back pain. Other side effects include: arthralgia, alopecia, arthritis, and pharyngitis.

Sunny XXOO

[June9961]

I started with the joint and muscular pain also instead of the constant itch. I get steroid injections into a bursitus in both hips which gives me relief for up to a year. I try not to take pain killers for arthritis in my knees etc. I also suffer from pharyngitis but I have been on Urso for 18 years.

[Jowen]

I have had joint pain, always waking up feeling stiff and difficulties moving about, for years. Even before I was diagnosed. The joint pain becomes better in the summer or when it's warm and worse in the cold. I'm sure exercise helps but it's hard to get started when you wake up in pain. Right now my right foot is swollen and hurts a lot. I went to the doctor with the same problem a year ago and was told to use pain medication. I've seen a rheumatologist but my symptoms were not serious enough... The situation is bearable because the pain fluctuates, if it was constant I wouldn't cope.

J

[SunnyXXOO in reply to Jowen]

Are you on Urso also? Appears to me that the majority people here are on Urso

[SunnyXXOO in reply to SunnyXXOO]

Wonder what horrific side effects Urso causes. I tried to take Urso but side effect so bad, and maybe not reversible. Sunny XXOO

[Ballgrl in reply to SunnyXXOO]

What side effects were you did you get from urso.A lot of doctors don't seem be aware of the side effects and I feel like they think I'm making it up.

[SunnyXXOO in reply to Ballgrl]

MOST MD’s don’t really know what side effects theses medications have. Big Pharm pads their pockets to sell their drugs.

It’s amazing how many people are taking Urso.

Does anyone here know what Urso is or was? Polar Bear Bile.

Half of these physicians don’t know what damage some of these medications causes, or what sort of side effect. PLUS are theses side effect reversible. I have learn to research any western medication in my mouth.

Peace, Love, Light

Sunny XXOO

[JaneAnderson1966]

I have joint pain too but I have been taking turmeric for around 3 weeks and lost some weight (trying to avoid processed foods and sugar) and the pain has been lessened quite significantly. My joint pains seemed to get worse when I came off the pred I was prescribed for AIH. Hope everyone is keeping as well as can be expected.

[SunnyXXOO in reply to JaneAnderson1966]

Pred will make your bone brittle. I have to say Turmeric is great, there is a fabulous Tumeric called Curcuplex95.

Dr Burt Burkston has a son Dr. Arthur Berkson, he is also Physicain, he works with Burt (Burt is older and wiser 🙂). Anyway, Arthur went to India the find out how they use there tummeric medicinally, he brought back Curcuplex95, it works fantastic. They only draw back is, you have purchase from a Physicain. I’m a clinician so I’m able to order direct. If your interested in trying it and you can’t find a Physicain that carries it, I can order you a bottle and send to you.

Love, Peace, Light

SunnyXXOO