Hi everyone and Merry Christmas, Happy Holidays and all the best for the New Year!
Just to update on my prior threads in case anyone else has experienced Gastritis. Against my doctor's better judgment (I use the term loosely) I took myself off Leflunomide. I've been on this medication since 2001. I experienced Gastritis in 2014. After 2.5 months of excruciatingly painful, sleep interrupted nights, the gastritis disappeared. The only thing the doctor's offered were medications (famotidine, omeprazole, sucralfate and OTC antacids) to relieve my symptoms which were useless so I gave up using them.
When these same symptoms returned recently I had an endoscopy which revealed chemically reactive gastritis. This meant that my gastritis was being triggered by a chemical. Since I didn't ingest any chemicals, I knew it had to be from one of my medications and all fingers were pointing to Leflunomide. I shared this with my Rheumy who poo poo'd the idea. The local pharmacist said he never heard of such a thing -- but I remained convinced. My Rheumy granted permission to go off the med but offered no alternatives to sustain myself and wouldn't even take my phone call to discuss how I should deal with this further -- I had lot of questions but my doc had no interest in discussing this with me.
In any event, it took a couple of weeks but my gastritis symptoms have disappeared and I'm off the Leflunomide for good! The problem is I am experiencing flares. I've been on Actemra (4th infusion) and am feeling discouraged that it isn't working. I've had RA for almost 30 years now and have tried all the pills, injections, infusions there are. The only med that ever completely worked enough to put me in remission was Ridaura which is hard to get a hold of these days and my insurance doesn't cover it. Though I consider myself luckier than some I keep wondering if I set my expectations too high for how effective these meds should be and when do they really "kick in". I spent yesterday (Christmas Eve) in bed from not being able to walk because of flares in my knees and ankles and tossing most of the evening trying to find a comfortable position for my swollen wrists and elbows as well!
I'm wondering if I should go back on Xeljanz (the doc & I gave it about 4 months) which worked about as well as Actemra seems to be doing (without the inconvenience surrounding what it takes to get an infusion).
Now searching for a new Rheumy and a new drug.... Hoping for suggestions -- perhaps there's a drug out there I haven't tried yet (one can always hope)!
Best to you all,