1. < Autoimmune Diseases

Crohn's plus Polymyalgia Rheumatica

Posted by suetex @suetex, May 1, 2023

I have had Crohn's since 1980 and been on sulfasazine pretty much the whole time. I now also have Polymyalgia Rheumatica. Anyone else diagnosed with a 2nd autoimmune disease? I would also like to mention that my small intestine got much better after I started taking Low Dose Naltrexone. LDN allowed it to heal and stopped my "non moving" pain I'm a believer. I take 2 mg at bedtime.

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luck3 | @luck3 | Feb 28 9:44pm

I have had Crohns for 25 years and recently diagnosed with Polymialgia and RA. Just learning about the two arthritis. On Prednisone and took one dose of Methotrexate. I also have an infusion every 8 weeks with Eyntivio. This is my first comment.

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1 reply
luck3 | @luck3 | Feb 28 9:50pm
In reply to @prestol "I have had Crohn’s since 2010, and have been in complete remission on Inflectra (infliximab). I..." + (show)
@prestol

I have had Crohn’s since 2010, and have been in complete remission on Inflectra (infliximab). I was diagnosed with PMR two weeks ago, and have rapidly gone from a starting dose of 15 mg prednisone up to 40 mg. Another condition is asthma, usually mild and well-controlled on inhaled steroid, but not at the moment. Symptoms are just barely controlled. I am extremely leery about long-term prednisone use, and want to explore alternative options that can treat both. I will talk to my doctors about LDN and sulfasazine, but needless to say I’d be reluctant to go off Inflectra. It seems my gastro and rheumatologist will need to start talking to each other soon! Anyone else out there with PMR and Crohn’s?

Jump to this post

Yes I have both. I take Eyntivio for Crohns and trying to find the right one for P. I las have RA
GOOD LUCK TO YOU!

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1 reply
beaver | @beaver | Feb 29 7:05am

I have had temporal arteritis since 2012, pmr 2021, and now ra diagnosed in October. I never knew of multi autoimmune disease till I now have three, at least what I know of. Please no more! I haven’t posted for about a month as I’ve been waiting for Kevzara, which I will receive next Tuesday, with my first injection Wednesday. Very leery of this new medication and the side effects. I’ll keep you posted.
Beaver

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 29 7:20am
In reply to @luck3 "I have had Crohns for 25 years and recently diagnosed with Polymialgia and RA. Just learning..." + (show)
@luck3

I have had Crohns for 25 years and recently diagnosed with Polymialgia and RA. Just learning about the two arthritis. On Prednisone and took one dose of Methotrexate. I also have an infusion every 8 weeks with Eyntivio. This is my first comment.

Jump to this post

Welcome @luck3, You have come to right place to learn more from the experiences of other members sharing your symptoms. I don't have Crohn's but do have degenerative arthritis and Polymyalgia Rheumatica (PMR). There are many discussions on the different conditions and it's easy to find other members and the different conditions using the search function at the top of any page on Connect. Here are some search results that you might find helpful that shows the discussions, comments and other useful links:

--- Chron's search - https://connect.mayoclinic.org/search/?search=Crohns
--- RA - https://connect.mayoclinic.org/search/?search=RA
--- PMR - https://connect.mayoclinic.org/search/?search=PMR

Are you looking to find something that helps for a specific symptom of the conditions?

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prestol | @prestol | Feb 29 8:35am
In reply to @luck3 "Yes I have both. I take Eyntivio for Crohns and trying to find the right one..." + (show)
@luck3

Yes I have both. I take Eyntivio for Crohns and trying to find the right one for P. I las have RA
GOOD LUCK TO YOU!

Jump to this post

@luck3 good luck to you too! It appears we have a small group with both Crohn’s and PMR, and several others with other autoimmune combos. I really think we need to encourage our various specialists to communicate with each other. Clinicians don’t always follow the research. They just don’t have the time, which is understandable. I’m also going to start MTX, but I am not optimistic, based on a few articles which have been recently posted on other threads.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Feb 29 8:55am
In reply to @prestol "@luck3 good luck to you too! It appears we have a small group with both Crohn’s..." + (show)
@prestol

@luck3 good luck to you too! It appears we have a small group with both Crohn’s and PMR, and several others with other autoimmune combos. I really think we need to encourage our various specialists to communicate with each other. Clinicians don’t always follow the research. They just don’t have the time, which is understandable. I’m also going to start MTX, but I am not optimistic, based on a few articles which have been recently posted on other threads.

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Hi @prestol, There are quite a few discussions and comments on Methotrexate. Thought I would share a link with the search results in case it might be helpful to see them:
https://connect.mayoclinic.org/search/discussions/?search=Methotrexate

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1 reply
prestol | @prestol | Feb 29 11:01am
In reply to @johnbishop "Hi @prestol, There are quite a few discussions and comments on Methotrexate. Thought I would share..." + (show)
@johnbishop

Hi @prestol, There are quite a few discussions and comments on Methotrexate. Thought I would share a link with the search results in case it might be helpful to see them:
https://connect.mayoclinic.org/search/discussions/?search=Methotrexate

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Thank you very much. This group is a treasure trove of information, and having you organize it for us is invaluable.

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luck3 | @luck3 | Mar 2 10:30am
In reply to @prestol "@luck3 good luck to you too! It appears we have a small group with both Crohn’s..." + (show)
@prestol

@luck3 good luck to you too! It appears we have a small group with both Crohn’s and PMR, and several others with other autoimmune combos. I really think we need to encourage our various specialists to communicate with each other. Clinicians don’t always follow the research. They just don’t have the time, which is understandable. I’m also going to start MTX, but I am not optimistic, based on a few articles which have been recently posted on other threads.

Jump to this post

Thank you for your response! I had just one dose of Methotrexate and got side effects, so my Doctor had me stop:( The search continues for a drug that will work.
I agree that my gastroenterologist and rumatolagihst need to confer with each other.
On it goes!!

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suetex | @suetex | Mar 3 6:09pm

I wasn't sure what group to post this with as I do have several autoimmune diseases. My Crohn's seem to have relaxed its grip on me. I just had a "normal" colonoscopy (the second one). I still have Sjogren's neuropathy, with problems related to that and PMR. I finally had a phone visit with my elusive neurologist/muscle expert and told him where I was at. He is going to tweak my diagnosis to non sero positive RA and get me treated with rituximab along with the IVIg I am currently taking. It isn't much of a reach. I am ready to try anything. Wouldn't it be great if it did something for the PMR, too. Seeing as how steroids are a no-no. I'll keep everyone posted.

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