feeling vindicated

In 2013 I had a bad flare up of joints that preceded an even worse bowel flare up. I was hospitalized and put on IV steroids and imuran and achieved a complete 6-year remission. In 2019 I experienced the same joint issues but with no bowel issues. This has been the state of play for 3 years. I've visited my GI and Rheumy many times over that time trying to convince them that something was active...but scopes, bloods and scans showed nothing despite many vague joint, skin and eye issues. I was fobbed off with 'hypermobility", "wear and tear" and "getting older" all that time yet in my hearts of hearts I knew something was not right. Finally after 3 years something showed up on ultra sounds; an appearance of a non-erosive inflammatory arthritis. I nearly shrieked for joy.....no one likes being diagnosed with a new condition but there is vindication in finally getting answers and a new treatment plan. You really have to advocate for yourself with your doctors and not all scans and blood work will give the full picture with autoimmunity.

Quincy,

The Rhemuy said he would treat it as a flare up and take a conservative route. Start IV steroids and bridge to Methotrexate while weaning me of Imuran. Long term he hopes Methotrexate will hold the extra intestinal stuff and that Vedo will quieten the bowel (I've been on Vedo for a year with good bowel results). Failing that he would consider using a biologic that would treat gut, joints and eyes together. Failing that he even considered dual biologics as a possibility.

In a way I'm sad to come off Imuran. Clearly it worked to shut down bowel and joints in 2013 and held the joints until 2019. However he thinks Mtx works better for inflammatory arthritis than Imuran.

He cannot name what the inflammatory arthritis is and may never be able to do that as it shows no unique identifiers. At the moment he considers it linked to a bowl pathlogy and that in 30% of cases a joint, skin, and eye flare up can occur without active bowel inflammation.

However, he does mention that it could still be in the 70% case and that even though scopes are clear there is the possibility that I have active inflammation in the small intestine of a Crohns nature that is producing no bowel symptoms at the moment. My colonscopy and CT scan are clear but I do have a lot of bloating and have always wondered about some form of ileitis or non inflammatory stricture. I had "patchy inflammation" and "ileitis backwash" in 2013. The latter was linked to pancolitis and the patchiness was linked to the bowel healing in a non-uniform way and so explaining the lack of continuity that should be seen as part of my UC dx.

Further advice / opinion greatly appreciated.

Post Edited (Charlie789) : 9/29/2022 1:17:38 PM (GMT-7)

Vedo = Vedolizimab = Entyvio

The Rheumy raised it as a possibility only but will defer to the GI. The GI has never found firm evidence of CD on any scope, biopsy or scan in 12 years. I'm still quiescent UC but with evidence of active extra-intestinal inflammation. I'm wondering does my case warrant a capsule endoscopy?

Charlie...thanks re vedo.
You got this far on perseverance, so, requesting the pill cam might be a worthwhile venture to get a conclusion to a possibility.

q

So glad you got some answers. When does the rheumatologist plan to start the IV steroids & Methotrexate?

Do you have long waits to see your gastroenterologist? If not, I would call today & schedule an appt to discuss this with him & ask for the pill test.

Good luck.

100% agree that the MTX works better than imuran for inflammatory arthritis. I have not been diagnosed with a separate condition, but back in 2020, my GI referred me to the rheumy due to joint issues and I was switched to MTX from imuran and it works well. We kind of just decided it wasn't worth trying to figure out if it was a separate condition or not because the treatment would be the same. I had surgery last summer after (total colectomy, rectum still in there), and I tried to come off the MTX, but nope, the joint issues came roaring back. I am hoping to come off of it once the rectum comes out and I have a jpouch done soon, mostly because I don't like the immunosuppressive aspect of it, but if it remains, we'll start figuring out what it is. Either way, with the MTX, make sure you take your folic acid every day. I also recommend taking it at night before bed.

Charlie, you don't need to be weaned off of the Imuran. I was on it with Remicade & Humira. I can't answer your question about Mtx, I've never been on it.

When do you see your gastro?

I doubt you'll need to wait but that's a good question for your doctors for sure. I've never waited between any of the biologics or other meds I've tried.

The rheumy was unable to label the inflammatory arthritis. Technically it is an inflammatory arthropathy at this stage. Blood test, scans, and presentation are all inconsistent with it being of one type. At the moment, due to it being non-erosive and due to it also presenting with a very bad flare in 2013 and disappearing for 6 years when that flare went into remission, he labels it as an enteropathic arthropathy. He says it is possible it could morph into a Seropositive, Spa or mixed connective disease over time. Equally it could stay as it is now and be a very much undifferentiated condition. In any case he regards this as just a label as by and large the treatments are the same.

My primary presentation on ultra sound was inflammed tendons and tendon sheaths which were not consistent with wear and tear or repetitive strain. I also had enthesitis in places. I complained of a sore thumb with hyper extension for a year which he originally was convinced was basal thumb arthritis or DeQuervians tendonitis. He injected both, without ultra sound, a couple of times and I got zero relief from that or from physio. On ultra sound the basal thumb joint and related tendons were 100% normal but the flexor tendons were very irritated and swollen right up to the insertion to the muscle of the arms. The inflammed tendon sheaths are irritating my tendons. I would imagine the same is happening in my shoulders.

In addition I presented with epi-scleritis of the eyes and mild seborrheic dermatitis of the scalp all of which are indicative of uncontrolled active inflammation in the body. It is for this reason I suspect that all of this may ultimately be bowel related but perhaps as CD and not UC.

My CRP is always normal and my ESR is only raised now and then. My FCP has been between 15 - 60 and my last c-scope in summer 2021 (when I still had these other issues) showed only mild redness of the left colon with all colonic biopsies normal. X-rays of joints are normal and MRI of back revealed nothing noteworthy. CT scan of pelvis and abdomen were unremarkable. I think al I'm missing now is the pill cam!!!

Go figure!

Post Edited (Charlie789) : 10/4/2022 10:05:17 AM (GMT-7)

Clo,

Has Mtx helped keep you inflammatory arthritis at bay? Does it also help with your osteoarthritis?

D

thank for that Clo. Had did they wean you onto MX? My Rheumy says it can take up to 6 months to have full effect. Were you bridged to the end of that period with steroids?

Charlie,

Just got off the phone with a friend who takes Humira. She was having a hard time with inflammatory arthritis, was taking MX, (had a hard time with it) and she just switched to hydroxychloroquine.

She hasn't been on it long enough to know how it is going to work--and I don't know if this would help with extra intestinal symptoms... But it's interesting.

Clo

Charlie, I'm not sure where you are reading that biologics will stop your joint pain. This forum & the crohns forum has plenty of posts from people having joint pain after starting a biologic, this has been going on for years.

Switching to a biologic is no guarantee it will keep you in remission or that it will help your joint pain.

Good luck with whatever is decided.