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Ulcerative Colitis
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Posted 8/24/2021 12:34 PM (GMT -8)
UCyousee, how are you doing with your joint and throat issues....have they returned full pelt like you were suggesting last week?

D
Posted 8/25/2021 10:01 AM (GMT -8)
Hi Simon! As previously explained, since coming off Humira the wrist and neck pain I had in the past (before starting on Humira) has returned. It doesn't seem to be getting more painful but it's persistent and bothersome. The sore throat / feeling of glands slightly swollen persists day and night. It's not hugely painful but it's annoying. I'm also getting that 'run over by a bus / can't get out of bed' feeling in the mornings. As my faecal cal is currently under 100 micrograms / g these symptoms aren't directly related to a flare up.

I'll be coming off the Clipper (beclametasone steroid) in early Sept to see if I can stay in remission with the Xeljanz (Tofacitinib) alone, then if that doesn't hold I'll be switching back to a monoclonal antibody, in the hope that it'll kill two birds by keeping me in remission and resolving the other symptoms that seem to have returned since I came off Humira (although it could be a coincidence).

How are you getting on?
Posted 8/25/2021 10:38 AM (GMT -8)
PS I'd add that ankylosing spondylitis runs in my family (as well as UC and psoriasis), and as I've had sacroiliitis that was visible on MRI perhaps it's not that surprising that the Humira, an anti-TNF, kept the joint pain I had under control.

My challenge now is to find another monoclonal antibody that will hopefully treat the UC and joint problems. Although I don't have a diagnosis of AS I did look at the meds that are prescribed to try to find a MAB that is licensed for both AS and UC, but it looks like it's only the anti-TNFs that are available for both in the UK, and my gastro team say there's not much point me trying another anti-TNF after Humira failed.

That leaves me with vedolizumab (anti-integrin) and ustekinumab (anti-interleukin-23). I need to do some more research before I decide which to try next.
Posted 8/25/2021 11:31 AM (GMT -8)
Thanks for the update. Sorry to hear that your issues still persist. Even though your calpro is low it is still possible that that your symptoms are directly UC derived. You said you had very little swelling, correct? Or do you feel this may be an independent condition?

Vedo is gut specific but there are cases reported where it treated extra intestional manifestations quite well. I was reading one such report about psoriasis being solved by Vedo for a UC patient. Did you ever try Remicade? Anit-TNF I know but with a greater reported success at induction over Humira.

My colon looked good on c-scope but like you I have a range of mild annoying symptoms that my GI still believes to be gut driven. He's given me a course of pred to see the effect and if no improvement he will switch me to an anti-TNF.
Posted 8/25/2021 12:29 PM (GMT -8)
Having read Damo123's post on a RA thread and Googled enthesitis I think it might actually be psoriatic arthritis as I have a persistent shoulder problem (diagnosed as a rotator cuff injury but there's thickening visible on ultrasound and I've had flare ups for years), and now and again get flare ups of painful tendonitis under the foot. Along with the neck and wrist problems this was more or less kept under control by the Humira. [I've had psoriasis since childhood].

It's such a shame Humira stopped working for my UC as I was very happy on it - no fatigue, normal energy levels, no joint pains, and 'my life back' for a few wonderful years. I packed so much travelling into those 5 years.
Posted 8/25/2021 12:30 PM (GMT -8)
Good luck with the anti-TNF if you do switch. I hope you get a few good years on it.
Posted 8/25/2021 12:46 PM (GMT -8)
Hi UCyousee.....interesting presentation however do be careful of the amount of overlap that exists with the SpA's...of which AS and PA and IBD Arthritis are all forms. The overlaps in symptoms are very large here...add in the reactive arthralgias and you have 5 or so conditions that might only ever differentiate themselves years down the line.

All your symptoms you mentioned are also consistent with stand alone IBD related joint pain and failing a clear differentiable symptom that is what GIs and Rheumys will go to first.

Joint issues with IBD are a maze and a minefield to try and decipher simply because the standard bloodwork rules of the non-IBD patient does not hold. There used to be a lady poster on here Kazbern in years gone by who was an expert on IBD joints. I learned a lot from her. She does not post anymore but you can read her older points by doing a search.
Posted 8/26/2021 8:28 AM (GMT -8)
Damo123, I spoke to my IBD nurse today and she agrees that my joint problems could well be extra-intestinal and related to IBD. I've decided to switch to Stelara (ustekinumab) and hope that it deals with the UC, joint pains and fatigue in one.

I think right now I'd be wasting the rheumatologist's time if I tried to get a diagnosis to differentiate between the possible causes of the joint pain. They'd probably be guessing anyway!
Posted 8/26/2021 9:46 AM (GMT -8)
They might be guessing but remember Rhemuy's see many many patients so have a really good idea to sus things out and moreover how things will develop. It might be good to progress the possibility of seeing a Rheumy with your healthcare system....in any case even requesting a visit now might put you on a few months NHS waiting list so maybe no harm in getting the ball rolling.

The one thing you should not do with IBD or autoimmune joint issues is try and strengthen them. It is adding fire to to a joint structure that is already inflamed and this is a point that physios continually miss. Massage and gently stretch the area but do not doing any strength work until the inflammation is gone or fully under medication control. An inflamed joint will not react to strength work until the inflammation cycle is completed.

D
Posted 8/28/2021 11:44 PM (GMT -8)
You mentioned I think UCyousee that you have failed pred in the past....did pred do anything for your joint issues or did it fail there too....like you im trying to work out of my joint issues are independent of UC or related to it
Posted 8/30/2021 12:54 PM (GMT -8)

Simon1729 said...
You mentioned I think UCyousee that you have failed pred in the past....did pred do anything for your joint issues or did it fail there too....like you im trying to work out of my joint issues are independent of UC or related to it

Hmmm it's been years since I've been on Pred due to it not working, and the side effects, so I can't really remember. What I do know is that I didn't have joint problems or fatigue while I was on Humira. This might be because I was properly in remission, or it might be because I have a SpA that was also treated by the Humira.

I'm not sure I'll ever know the answer to that.
Posted 8/30/2021 1:22 PM (GMT -8)
Have you tried Vedo UCyousee...although gut specific there is a reasoning that it will also help joints and other EIMs if both are occurring because of gut inflammation or reactive to that.....there is a good video by David Rubin on Positioning Biologicals where he supports the use of Vedo in those cases....although your current plan of trying the IL12/23 inhibitors first seems like an optimal plan.

There are so many new Jak inhibitors and IL12/23 inhibitors on the way that the landscape for biological management of IBD and indeed other autoimmune conditions will be very different in a few years.
Posted 8/31/2021 1:14 PM (GMT -8)

damo123 said...
Have you tried Vedo UCyousee...although gut specific there is a reasoning that it will also help joints and other EIMs if both are occurring because of gut inflammation or reactive to that.....there is a good video by David Rubin on Positioning Biologicals where he supports the use of Vedo in those cases....although your current plan of trying the IL12/23 inhibitors first seems like an optimal plan.

There are so many new Jak inhibitors and IL12/23 inhibitors on the way that the landscape for biological management of IBD and indeed other autoimmune conditions will be very different in a few years.

From what I understand ustekinumab (Stelara) tends to work faster than vedolizumab (Entyvio) so I've decided to try Stelara first. Then if that doesn't work I'll go to Entyvio, then maybe back to Xeljanz to give it more time to work (although I'm a bit wary of the side effects).
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