Thanks for this Q & IPoop. I have UC; previously in pancolitis form even to backwash ilietis. The report I gave was based on the pathology findings of scopes last month. I've requested a copy of...
Hi All, I wonder could I get an opinion on my latest 3-year colonoscopy and gastroscopy. I read this as being a good report but not quite in full remission on the left side. Gastroscopy: Mild reflux...
Has anyone had success with Stelara for joint and extra intestinal issues? Or any other IL23 inhibitor for that matter. I thought beave who posts here might have mentioned that previously but cannot...
Hi everyone, Havent posted in a bit. Hope everyone is good. Still having issues with my joints and eyes. Bowel seems ok except for sharp pains on left hand side and a lot of bloating with no gas....
Thanks for the comments Gloria and iPoop. Much appreciated. Like all my blood and scan results they lie on the borderline. I'm tired of the nurses saying...."well there are not toooooooooooo bad"...
Has anyone had experience with Entyvio trough levels. Mine were 12 post 8 week infusion. Not sure of the units here but think these were standard. The nurse called them "not too bad". From what I...
So some of you will know that I have been struggling with strange bodily systems for 2 years now even though my UC is in remission on entyvio. Mainly vague joint, skin and eye issues that under scans...
Yes gloria_D...thats exactly right...i feel a pinch and a zap of electricity...not terrible painful though but makes me nervous thanks for the other messages too...numbness and tingling is a freaky...
Hi, People might know on here that while my UC is in remission for a good bit now on Entyvio I have had a lot of joint and eye issues put down to extra intestinal manifestiations. I have a good GI...
People might recall that while my bowel issues have been good for 2 years now on Entyvio I've been struggling with stubborn eye, joint, tendon and some skin issues. I switched from Imuran to Mtx with...
I might be different from the norm...but i think i had one flare...it lasted 6 years....now thats not to say that symptoms did not drastically improve during that period but i do not think i was...
I had 2 dental roots removed 2 weeks ago in order for my bridge to work better. The healing of the roots has been terrible. I did develop dry socket but even still it is 2 weeks now and it still...
My IBD nurse made an interesting comment today....biologics and small molecule therapy are excellent at being preventative of flares occurring rather than being necessarily meant to cure a flare....i...
i think there is a certain threshold of therapeutic medication that must b reached and sustained to burn out the flare....maybe for some this level is too high and no med can achieve it for...
that is a good story do people find it the case that getting to remission is much much harder than staying in remission? seems to be the case with so many i read about here,,,wonder ,why that is...
You need ultra sounds, MRIs. what does ur x rays say. you tell us they diagnosed you with OA? How so? What is the OA pathlogy? Is their joint erosions, edema, effusion, ostephtyes? If so to what...
Just because your tests are negative for rheumatoid factor does not rule out RA. You could be seronegative. But saying that on these forums you'd swear RA was the only form of joint disorder out...
You need to explore with your GI if you have antibodies to Remi? You also need to get a Rheumatoid panel run and possibly ANA testing. Maybe you have these done already. It's not certain that all...
Actually Faith just read your other posts...have you considered the possibility that the joint issues might not be Remi related and instead form part of an autoimmune response; either independent or...
Why did they add Mtx to Remi for you. I had been in remission for 8 years on Entyvio and Imuran. I stared experiencing extra intestinal symptoms and evidence of a soft tissue arthropthy. I've been...
I use Reddit now mostly. I only found out about it by accident with all the arguments last year over supplements. There are tons of new posts each day and I've reconnected with members I used to chat...
Are you getting dual therapy for IBD only Hambo or for IBD with extra-intestinal symptoms? Like you I'm in europe too and no issue with dual therapy on my insurance. In fact if I enter a study on...
Yes I've read those but I guess I'm wondering more for people who may be using dual therapy for dual pathologies. Thanks...
Hi there, I've posted in the past about being in remission from UC for 10 years now. I'm on Entyio and Imuran with clear scopes and very low cal pro. However for last 2 years I've had a range of...
Do the jak inhibitors block one type of cytokine only or a while ratchet of them?...
Hi Clo. You will be aware that I have faced this same situation with my Rhuemy, less so my GI, for 3 years and only recently have convinced him that my issues are either extra intestinal or...
How are you doing these days GloriaD.....are your issues confirmed UC / CD / Gerd yet?...
Thanks for the advice and the hope UCyousee. Can I ask if you tried Methotrexate at any point? Maybe you are sill on this? How did your UC and SpA respond to oral and / or IV steroids?...
No i think not. Keep imuran for the moment and see will the steroids get rid of the extra intestinal stuff. I'm frustrated by how slow he has been to react and my guess is that imuran has run it...
Yes thanks. The IV steroid pack seemed to have instantly gotten rid of most of the extra intestinal symptoms. Some symptoms literally fixed themselves during the 90 min infusion. My thumb was very...
So 3 years nearly to the day after I first report symptoms to my Rheumy he started treating me for "inflammatory excesses" of IBD. In the end he did not go with Mtx but rather spoke to the Gastro...
For myself I'd actually prefer to have an inflammatory arthritis diagnosis than simply degenerative spine OA disease. There is not much they can do for the latter except manage it and in extreme...
i know how you feel....you sometimes wonder are the bowel issues secondary to something else...rather than it being extra-intestinal is it really extra-articular or extra-ocular. My bone and...
That is very interesting poppydoop. I have had to fight 3 years just to get a broad diagnosis so i can understand what your sister went thru. I definitely want to work thru all of my options and see...
Straydog...I do find your post very negative even though I imagine you were trying to be helpful. I never said it would cure my condition. In the same way that starting a biologic is no guarantee...
Thanks for that clo. I'd rather start a biologic than MTX or else add hydroxychloroquine to imuran. I had said that to my Rhemuy many times. He contacted me 2 weeks ago and was all action about the...
Yes. See my posts on the main UC page on this issue. Ultimately it is an inflammation problem. I too am on Entyvio and seem to be in bowel remission but have been diagnosed with an inflammatory...
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?...
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...
I guess I'm asking about Imuran in relation to MTX....right now I have a lot of Imuran built up in my system and I'm wondering does this need to be lowered over time before a full doze MTX can be...
Thanks for this suchatravesty.....can i ask how did they get you onto MTX? did they stop imuran immediately and start full dozes of MTX?...also how long until the MTX fully kicked in?...
Thanks for all the good wishes. I think the GI and Rheumy will start treating me next week and altering my treatment plan. I have spoken before about my frustration with the Rheumy in believing my...
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...
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...
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...
I find my GI very very good. But clearly I have extra intestinal stuff going on. I find my rheumatoligist doesn't give me much time or credence because I'm not presenting with swollen and stiff...
Thanks you for your reply CCinPA....I admire how you were so persistent and how much detail you have given of your experiences....
What are your best tips on how to advocate for yourself and be forceful with doctors when you think they are not taking you serious and or when you feel something is wrong but they dismiss it? What...
very much delighted for you....what was ur recent blip put down to then and high FCP reading?....a stomach bug?...
Still not feeling great despite minimal bowel issues. I have some joint, skin and eye stuff mildly going on as well. I'm on Imuran and Vedo. My FCP is normal and my blood work looks amazing except...