Anyone else have PBC and RA?

[Ktltel]

Hi PBC family,

So, I was diagnosed with PBC 10/10/16. Good news is they found it early. And after a second attempt I seem to be tolerating URSO. Been back on that for 3 weeks.

About 5-6 weeks ago I noticed my joints were hurting. First my knees, then progressively over the days to weeks my ankles and wrists too. I feel like the tin man of Oz needing that oil can! My GI is referring me to a rheumatologist.

I'm already eating an anti inflammatory diet and my naturopath has me on supplements for arthritis for the last two weeks.

My question is, I'm so scared about the meds for RA. Have you seen some of those side effects? The big ones are cancer, and "liver" problems..but I already have liver problems!! Now what?

Does anyone else have PBC and RA? How did you decide which RA meds to take? How are you doing? Anyone on Plaquenil? And is Plaquenil the least invasive of the RA medications?

The other shoe dropped. Anxiety and depression setting in.

Stella😢

[Hidden]

Stell no, please! Fight the depression. Don't let it get you. I wish that I could help you some how. Your disease was caught early. You're going to find the right meds.

[Ktltel in reply to Hidden]

Thanks Jenny. Its been an anxiety ridden day. My GI wasn't very encouraging about it all either. Hopefully someone on here can she'd some light on the subject. I'm hoping for some "positive light." I know it's just another hurdle to get over. Guess I was still getting used to the PBC diagnosis. Now this. Thanks for your positivity. I need it.

[Hidden in reply to Ktltel]

I wish that you were here with me. I have the best doctors that I ever had. My primary referred me to a GI. He's a Saint. He won't diagnose me yet but he sure isn't shy about listening to me and running test. I feel so blessed with my team. He wants to see my biopsy.

[Ktltel in reply to Hidden]

Good deal. I'm so happy for you!! Here, the best doctors are at KU med but my insurance won't cover me for KU led if there are rheumatologists in my area... which there are. So I'm stuck with local docs.

[Hidden in reply to Ktltel]

Insurance companies can be so difficult from what I'm learning.

[Ktltel in reply to Hidden]

Yes. Frustrating. I took a Xanax.

[butterflyEi]

Hi Ktltel

Hi Stella

Such a great description to call us a PBC family, I often felt that we are a good bunch of kind helpful people on here and very supportive.

So sorry to read your post, I don't have RA but I do have painful hands sometimes worse than others. I try not to take anything because of the side effects. I do hope the anti inflammatory diet and your naturopath help you. I used to know a very good chap who was a naturopath and very knowledgeable but unfortunately he moved. I have been battling on the verge of depression for a while now and have recently started listening to guided self motivation and meditation via You Tube which even though in the early stages I believe is helping to lift me somewhat. I wonder if you have the opportunity whether calming motivational pieces would help with the anxiety and depression, at least it is not taking further tablets.

Just had a quick look and found the Mayo Clinic (which I believe is a well respected source) has an article on self help for RA, it may be worth a look even if only to reinforce what you probably already know.

mayoclinic.org/diseases-con...

Hope this is of some help to you in addition to the action you are already taking but let us know how you are getting on.

best wishes

[Val02]

Hi I have PBC and Inflammatory Arthritis secondary to PBC.

I am on Plaquenil as the safest option and I have not had any side effects to it. It has helped a lot.

Like you I felt like I'd been struck again when I got it but I'm afraid it's all part of the autoimmune bag.

Best wishes

[Ktltel in reply to Val02]

Val02,

Thank you for your reply. How long have you had it and been on medication? Did the meds cause your liver any issues? I'm scared to take anything, especially the ones that cause very very bad side effects. Eye issues is scary too. I'm glad to hear you're doing well. Thanks for responding to me. Please keep in touch.

Stella

[Val02 in reply to Ktltel]

Hi I have been on Plaquenil for 3/4 years. Liver has not been adversely affected. Monitoring of the drug is 6monthly blood tests. As for my eyes. I have an eye test once a year. On the dose I am on they wouldn't expect a problem. But that is something to discuss with your doctor.

My hepatologist is happy for me to take it.

[Ktltel in reply to Val02]

Thank you! You made my day. That is good news to hear. I can only hope I respond the same way.

Thank you again.

Stella

[Ktltel in reply to Val02]

Val02,

Is inflammatory arthritis and osteoarthritis the same thing? I'll find out what kind I have sometime next week. Being that it's symmetrical... Ankles, knees, wrists... Does that mean it's RA?

Are you on a special diet? Sorry for the load of questions.

Stella

[Val02 in reply to Ktltel]

No inflammatory is similar to RA but I'm serum negative for rheumatoid factor. Symmetrical tends to indicate RA / inflammatory.

I'm not on a special diet but my diet tends to be linked more to my PBC and what my body is happy to cope with. But I know there are diets that are meant to help that you could explore.

[Belgravia]

Hi Stella, I have both & going good! PBC since 2008 & RA since Oct 2015, although symptoms for year before diagnosis. I started on Plaquenil, but had to stop following eye scan - it may cause problems with optic nerve. But this is not same for everybody. I also have kerataconus. I was also on steroids for 7 months which gave me a new lease of life! Those not good long term. Was then put on Metatrexate & weekly Embril injections - this worked for awhile until I had reaction to injection. Since May 2016, I take 20mg Metatrexate & Humira injections (every 2nd week) & all going very well. I have the odd flare up but rest cures all. I work full time & pretty much have a good lifestyle! I find rising above it is best policy! Fatigue is the most difficult to deal with but now I just surrender & sleep when needs be. There are plenty of meds out now for treating RA & hopefully your doc will find something that suits you. Best of luck. Stay positive & things will improve!

[Ktltel in reply to Belgravia]

Belgravia,

Thank you for your response. Yes, I read about the eye issues with Plaquenil. I have dry eye already. I have such anxiety taking meds that cause other serious illnesses. I'm glad to hear your doing well.

Thank you.

Stella

[CeeCee101 in reply to Belgravia]

I know this post is old but perhaps folks are still here. I am shocked methotrexate was prescribed as my rheumatologist said absolutely not with preexisting liver disease. Love to hear anyone else’s experience

[reenann]

Hi Stella,

I was diagnosed with PBC at exactly the same time as you and have been taking URSO since then. I had joint pains and my mum has osteo and rheumatoid arthitis and I was worried I was getting it.

I was also diagnosed with severe vitamin d deficiency and one of the side effects is joint pain. I was put on a prescription of Vit D and now take a multivitamin which includes it and my pains are pretty much gone.

Hope this helps.

Irene.

[Ktltel in reply to reenann]

Thanks for your response. Had my vitamin levels checked. All is OK so, it's not that. 😧

Stella

[Teri8672]

Yes be reassured there are a lot of us. I’ve been diagnosed since 2004 and since I fell I started getting arthritis in my back knee they say because of injury it woke up my arthritis but it usually happens later stages.

[Vvourakis1980]

Yes I do.. hi I’m 37 and have had RA since I was 28.. also 2 years ago got the worst diagnosis ever which is CREST SYNDROME a form of sclederma.. and of course 2 years ago they found PBC.. I’ve had high liver enzymes ever since I was 28 like 500.. when they took my blood my dr would freak out.. I don’t know how positive I am but it sure does help to know I’m not alone in this struggle.. would love to chat.im open to learning about my diseases and open minded.. Vanessa

[Vvourakis1980]

I’m also taking well supposed to be taking ursodiol.. 2xs a day but I did use the restroom for about 20 days and I got real scared.. for my RA and crest I do an infusion ever 6 months called rituxan. It’s kinda like chemo I sit there for 8 hours with an IV, it seems to have my arthritis flare up at bay.. I never know if it is working or I’ve become immune to the pain in my joints after a while.. ha.. but I go to meetings and that helps a lot support groups for any reason are good to boost moral.. life is so precious and don’t use the time being sad.. I do a 4 min meditation everyday too..

[MarilynCr]

I have PBC, RA, fibromyalgia, osteoarthritis and arthritis.

[CeeCee101 in reply to MarilynCr]

What meds are you on?