Hi I've been diagnosed with behcet's about a year. I've been looking for other people struggling with the same misery. Recently I've had really bad flare up of what looks like psoriasis all over my arms. Also I seem to be getting random muscle pains in different places. My doctors say it no big deal but Id like to know if anyone else suffered with this or has anyone any tips on what I can do either with my diet, creams, anything really that may have worked for you.
Any help would be great.
Thanks so much
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Shamcga
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Hi gillian, I've had it all they say it's just part of it. At first it wasn't itchy it's still not really more stings when it's agreesive. The doctors seem to think it's just part of it. I'm on colchicine and steroids.
I suppose I'm looking for any tips on what we can do outside of our medication.
With the muscle pain that's good to know i drive a lot for work so I'm often inactive for a long time
I used to have colchicine and eventually started to get a rash which got worse and worse and eventually I convinced the GP to do a blood test, meanwhile I emailed my then consultant and she insisted I stopped taking colchicine altogether, I had had a toxic reaction, not uncommon, my liver function test showed highly raised levels of GGT at 365 when the normal range is 6 to 35 here in the area where I live. I know some people on this forum also experience small rashes from time to time, the drug is great for many but sadly for me it's now off the list.
I get a spotty rash on my elbows, left more than right, sometimes it itches other times not, my GP gave me cream to try to stop the itching, its called Dermacool it is made up of aqueous cream and menthol, it seems to quell the itch most of the time and moisturises, initially got for a slightly spotty but very itchy left thigh.
I took pictures last time my elbow was up and showed my consultant last month and she said it was associated with Behcet's but I stupidly did not ask her what she called it...
I’m curious if you or GillianTS have tried fish oil?
Fish oil is great but you need to make sure it’s a pure formula. I take Nordic Naturals:
If taken as many as 6-7 a day. I aim for 4,000mg 6,000mg a day but sometimes I just get tired of all my pills so I always make sure I get 4,000 daily no matter what.
My Gastrointestinal Doctor is big on Fish oil he says it’s so good for anything that’s inflammation related.
My Doctor says our diets are higher in omega 6 and 9 and we need to get the 3 at a higher dose.
Hi, it’s seems it’s not uncommon to pick up more than one autoimmune condition. There is a genetic association of HLA B27 with this one, so anything that keeps stress levels down, an anti inflammatory diet (gluten and potentially dairy free). Topical steroids but also systemically via the steroid or immune suppressant route. Best wishes
Thank you for replying, it seems my thyroid has been acting up as well.
Hard to not stress when you lost your job year ago and it’s all due to this undiagnosed illness. I’ve been through a lot in my life but this time it took me down and with a vengeance.
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Rash
