New Medication, Tests, miserable and needing advice

[Guest guest]

Hi all - So I have been seeing several doctors recently and I'm starting to feel like there will never be an end to this. Over 10 years of severe EN, constantly being put on prednisone, and several doctors pushing me off to the next doctor so they don't have to take the time and deal with my issues.I have always been put on prednisone for outbreaks, but because I have been on it so frequently over the last 10+yrs the doctors no longer want my body to be on it. (For those of you who are taking prednisone/have taken it in the past be aware of the many negative long lasting side effects: weight gain, decrease in bone density, behavior/mood changes, etc). Today I started Plaquenil (generic name Hydroxychloroquine). Has anyone else taken this or similar medications and

had success? I am really hopeful that this will be the answer. They said it would be a long-term medication to keep the flare ups under control. I have also been gluten-free for almost two months, but still have had 2 separate outbreaks. The doctor said it's too soon to know if the gluten-free is causing the EN. But, the gluten-free has made me feel better all-around.I've just been having a hard time lately coping with the severe outbreaks and pain. And when people ask my why I am sick all the time, or don't want to work out with them, or I am so tired..it's hard to explain to them about these 'bumps' I get on my legs and all the problems they cause.It's nice to know I am not the only one suffering, and I have to remind myself that it could be so much worse..there are people dealing with more extreme health issues. If anyone has any more advice to offer (about the

Plaquenil, gluten-free, other things they have been diagnosed with that contributed to the EN) I would greatly appreciate it. My doctors call me "perplexing" because they just can't quite figure it out what's entirely wrong.I had a positive ASO-titer test, positive for the gluten-intolerance, anemic, and a few other things came back from my blood work but nothing official, more blood tests next month when the prednisone is out of my system...just trying to get to the bottom of everything.Sorry for the long random message, and I appreciate any feedback.Best,