feeling vindicated

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 that it will cure your bowel issues. But equally these pages are full of people who have had success with biologics for joint and other issues. I'd prefer to take a positive vibe on my condition and explore as many treatments as possible for which Enbrel, Humira, Stelara, Tofa, Rinvoq and the likes all have good indications of treating inflammatory arthropties. As my Rheumy himself indicated.

I think it is important to approach treatments in a positive way. I most certainly did that with Imuran and Remicade in 2013 which both put my joint and bowel issues into remission in under a month

Hi Charlie I'm glad to see you're finally making progress. It's so frustrating when doctors don't listen to their patients. My sister has ankylosing spondylitis and crohns, both of them independently took years to diagnose, mostly, she feels, because the doctors did not take her seriously when she presented her symptoms. She did well on humira for both conditions for several years until she developed antibodies. She is now trying simponi. Her hospital has indicated that it may be an option to try both entyvio and a tnf-inhibitor together in a clinical trial. She did try MTX at one point but stopped and I can't remember why. I guess my point is there are many options to try, but she has always had to fight to get what she needs (she is in the UK). The level of care she receives is much better since she switched to a research intensive hospital.

Charlie,

They have checked for other autoimmune diseases.... And it's been negative so far. But with UC/Crohn's it took 3 years for my bloodwork/labs and tissue samples to indicate that something was slightly elevated. So I'm not ruling anything out.

I was healthy all my life until I developed symptoms after eating out....going to the bathroom 20 to 30 times a day.... and then everything went down hill from there. So I dunno.

I do know I had never experienced any extra intestinal Symptoms until after I'd gotten so ill from eating out. My first extra intestinal symptom was needle like skin prickling when I'd go out in the sunshine.... And it's grown from there. The arthritis started intermittently right after the bathroom episodes started. My joints started aching then they didn't....then they didn't want to bend. That fluctuated until suddenly my knees pains were so bad I could not walk. 2 CT scans 6 months apart showed normal knees with cartilage and slight inflammation to knees. 2nd CT showed no cartilage and inflammation. I was on both Remicade and MX during that time frame. (Still am) I am now bone on bone. They are recommending knee replacements.

There's a part of me that wonders if map or ecoli are the culprits. It was just so.... Sudden. But I was on Prednisone also. My rheumatologist thinks it might be because of UC/Crohn's exasperated by the Prednisone.

Clo

Post Edited (clo2014) : 10/11/2022 10:31:08 AM (GMT-7)

Charlie789, thanks for your comments on my thread, too. While my situation is different (the sacroiliitis was found incidentally), I just wanted to affirm that these experiences of knowing something is wrong and feeling relief at FINALLY having proof for it after being brushed off are all too common.

I'm still hoping my situation ISN'T an autoimmune arthritis, but it probably is, and there's a way in which the relief of knowing that there may be help for my pain is actually its own reward. I'm glad you've started to find some answers and be taken a bit more seriously by your care providers.

Now here's hoping for bigger-picture insights in the coming years into all of these co-existing autoimmune troubles!

Charlie, you are so right. After taking Methotrexate and Remicade my knee tendons and thumbs will work and not ache. The osteoarthritis pain in my knees does not get better. That's why they are recommending knee surgery for me.

It's hard to explain but my rheumatologist said she hears that frequently..... LOL.. At least I am normal in that way.

Although I do get confused on how they can say Prednisone helped cause the arthritis but now it is OA and inflammation.

Clo

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 people who convinced him that as Imuran had once worked to keep all this at bay it was worth another shot. He gave me 750mg of IV pred and tapering off 20mg oral pred for 3 months to hopefully allow the eyes, scalp and tendons heal. The bowel continues to be very good with Entyvio.

If symptoms do not improve or return he will consider Mtx in place of imuran. If that still doesn't work he will talk to gastro about Humira on its own or else a combo of Vedo and and another biological each at 50% of the doze. Different from what he originally proposed and different from clo's treatment plan for similar.

You would not want to need CPR from my Rheumy. He'd take an hour to begin administering it to you!!

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 sore with tendonitis for 18 months and no physiotherapy would touch it. 30 mins of IV steroids and it was healed.

The Rheumy's reaction...."Curious. I wouldn't have thought the inflammatory arthritis would clear up that quickly".

No change to meds. They want to see what happens when the steroid pack wears off.

So they aren't starting you on the imuran now? Just the steroids?

I have no idea. That's weird. I hate when my doctors arent clear and are slow at moving on things. Sorry, it all sounds frustrating.

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?

nice to hear from you again UCyousee. Glad Stelara is working. How fast did it work for you? Did it get the fatigue, joint-pain and bowel all under control at the same time?