...PBC plus another autoimmune disease?

[divinemizm]

so glad i found you. OCALIVA is tremendously expensive, and it might not work for me!

many questions, but 1st: how many of you have PBC in addition to an autoimmune disease such as SLE Lupus?

[gwillistexas]

I take ocaliva with great results so far. Yes it is very expensive but there are ways to get help with that expense. Good luck to you.

[divinemizm in reply to gwillistexas]

thanks! All the best to you, too!

[divinemizm in reply to gwillistexas]

do you have any side effects with Ocaliva?

[gwillistexas in reply to divinemizm]

G’morning. No, I have zero side effects, not even itching🤗

[jane1964]

Hello I started with pbc 7 years ago and in last couple of years now having rheumatic type problems for which I am trying hydroxychloroquine and soon to start azathioprine.I was given a steroid injection which worked amazingly for the pain, a name for this condition remains elusive but now have total of 4 other autoimmune antibodies apart from the AMA.So your not alone in having more than one problem, I find its hard to tell what's causing what symptoms. And this has been part of the problem in that when you feel rubbish with pbc anyway it's hard to know if somethings that or something else.Jane

[divinemizm in reply to jane1964]

thanks jane1964. Hang in there!

[donna01]

I have Raynauds with PBC..

[divinemizm in reply to donna01]

hang tough, donna01, it could be worse!

[kingsnorth]

I have lupus and sjogrens l was diagnosed with PBC 2 weeks ago l take URSO and hydroxy im 67 and live in the UK.

[KarenLeslie in reply to kingsnorth]

I have PBC, SLE LUPUS, SJOGRENS, RA and spinal stenosis. I Take urso and 13 years of Plaquinil plus pain medication.

[kingsnorth43 in reply to KarenLeslie]

Same as me Karen but I don't take pain meds I hope you are managing well

[divinemizm in reply to kingsnorth43]

thanks kingsnorth43!

[divinemizm in reply to KarenLeslie]

thanks Karen Hang in there!

[MissusTee]

I have scleroderma, pbc, sjogrens and hypothyroidism. I am also clinically positive for lupus. I have loads of different autoantibodies!!

[My-life in reply to MissusTee]

My sister has scleroderma she is in remission.

[divinemizm in reply to MissusTee]

thank you MissusTee!

[mtrafter]

In the last 12mths have added a second autoimmune disease - Polymyalgia Rheumatica commenced on 1tmg of Predeisilone

[mtrafter]

Ooops! That should read 15 mg of Prednisolone tapering down. This has significantly improved my stiff and painful muscles but has thrown into the PBC mix some new unpleasant side effects. Such is our individual journeys.

[divinemizm in reply to mtrafter]

thanks mtrafter! Yes, we manage our individual journeys to the best of our abilities with "supportive contacts"--with or without our physicians.

[kristieerhodes]

I have PBC and Sjogren’s along with Raynauds and Fibromyalgia. I am AMA negative and have been since dx in 2005. There is a small percentage, less than 15% I think, that have the non-AMA PBC.

[divinemizm in reply to kristieerhodes]

thank you kristieerhodes!

[Cfay]

I was diagnosed with PBC a bit more than 5yrs ago and put on URSO 1000mg day with little change in my counts. Ocaliva was added 5 months ago and my levels are slowly dropping. The drug is still in test phase 3 and a controlled specialty drug. It's only given if you're unable to tolerate Urso or if counts are not reducing which adds to it's high cost. Warnings were recently sent out by it's manufacturer per FDA requirements that included making sure your prescribing doctor is closely monitoring blood levels, dosage, side effects, and PCB stage; drug deaths were reported for overdoses and those at stage 4.

If you have one diagnosed autoimmune disease -it doesn't like to be alone- you'll have other gifts. I also have celiac, LTD scleroderma (w/Raynaud's syndrome), supposedly fibromyalgia, and leftover gifts from septic shock.

[divinemizm in reply to Cfay]

thanks Cfay. This really helps. glad to know the Ocaliva is helping your enzyme levels to decrease slowly. Do you have any side effects either mild/easy to live with or particularly distressing?

[Cfay in reply to divinemizm]

Hmmm...trick question 🙂 I have extreme debilitating fatigue, brain fog, dry eyes & mouth, itching (Benadryl is my friend). My gifts from septic shock (PSS) are PTSD, memory loss (short & long-term), 2-types of tachycardia, joint & muscle pain (fibromyalgia), LTD scleroderma (autoimmune) w/ Raynaud's syndrome. I have a permanent colostomy, asthma, celiac, and oral Allergy syndrome (autoimmune deficiencies); I'm allergic to over 20+ foods). I did early retirement (at 58) on disability 3.5yrs ago and was awarded SOC sec disability this week. That said, life is good and I am blessed.

[PBCTracy]

I have PBC plus Endometriosis.I take 1,000 mg of Urso.Since I have PBC,my pain meds for Endo are limited to low dose Tylenol.

[divinemizm in reply to PBCTracy]

thanks PBCTracy!

[Pin44]

I have had arthritis in hands, and now neck & shoulders, for over 20 years, and

also been on thyroxin for underactive thyroid for over 20 years. PBC diagnosed

3 years ago - first two years asymptotic, and have had symptoms, eg. chronic tiredness,

mind fog, + a few other bits and bobs that all vary from day to day, as from March last year, 2017.

I seem to be lucky compared with some of the stories I've been reading on this web-site, and I'm also already 73 years old!

PIN44

[ETW1]

Hi I was diagnosed with pbc in October 2017 along with Psoriatic Arthritis, Osteoarthritis and 18 months earlier Interstitial lung disease.