I have been in an awful flare genital,intestinal, nose. throat & mouth ulcers, (now feeling like it’s going back to cranial nerves) Feeling like had a weighted blanket on me all day, feeling of being hot and cold all day. Inconsistent bowels, stomach cramps, inconsistent sleeping pattern.
Days when I can’t lay on my left side as I’m in pain either in my stomach, back or head.
This has all been since March and prior to that it would stay in one area longer and linger. I literally have been from one area to the next with no relief.
In December 2018 rhuemy took me down to 1/day colchicine and I took a slide backwards and in Middle of March 2019 I and my GP decided to put me back on 2/day colchicine when I had the genital outbreak so when I had my End Of March appt with my rheumatologist she finally agreed and said she is leaning towards Behcet’s and so Now I’m on 2/day colchicine and she added Plaquenil I’m into my 2nd month of the combo of (Plaquenil) and colchicine.
It wasn’t until my March appointment my rheumatologist and I were on the same page and now I feel have a more open relationship where she is listening to me and I can reach out and message her she’ll respond and she’s realizing I do meet the criteria. Now it’s waiting to see if the Plaquenil will work and how long I can stay on the colchicine 2/day combination.
My doctors have all cautioned me about getting on prednisone and trying to keep me away for as long as I can (I understand and respect their reasons) as that my symptoms (flares) could come back with a vengeance.
I have had little to know relief since November 2017 about 25-60 random good days and by that I mean my good days were I could tolerate the pain, nothing like before I had prior to November 2017.
I final reached out to my rheumatologist for a
burst of prednisone and she agreed it was time.
My question is how long does this burst give most of you relief?
I know we are all different, but I understand why most go on this for the relief.
Any suggestions/comments would be appreciated for ulcers relief.
This combo of meds together, what side effects to watch for?