Hi all I have been MIA for some time now. Workload,reality of disease and then being just blown away by some symptoms. Have had X-rays done on my hands and hips Lo and behold the bones look apparently great (so here if feel embarrassed) if it was not for my Specialist that literally has been giving me cortisone himself in my right hip and into my finger joints for the past 2 years, nobody would have believed me! So here comes my question to you as a community. Have you found yourself with soft tissue inflammation that caused your joints or bones to get all misshapen or have you had and X-ray pic up the arthritis? I am baffled,as is my Specialist for that matter. Want to sit in a heap and cry and need input please? My specialist said he would be looking into this with a group of his peers and get back to me asap. That was about a month ago. Besides that I am now back on Methotrexate too besides my Arava and Trustan and the occasional Cortisone drip for my hectic flares. Sorry for the negativity X #Arava #Cortisone #Methotrexate
Soft Tissue Inflammation Vs. Arthritis. Is th... - Behçet's UK
Soft Tissue Inflammation Vs. Arthritis. Is this part of Bechet?
I have terrible pain in all of my joints from my neck to my fingers then into my hips. I used to take steroids (methprednisolone) as prescribed by the consultant but no longer do so as It causes me more problems. I’m not sure about inflammation of the tissue and I sent you believe that there is information happening which is causing significant pain I do however believe that my x-rays or tend to come back quite normal and so I think that it’s just where the BD in flames and then reduces if that makes sense?
I hope you’ve been able to get some relief-please let me know how you get on with i’ll be interested to hear what comes back from your consultant when he speaks to his peers
Take care
C
Will definitely get back to you when I get an awnser, for the moment I was just given Methotrexate on top of my Arava🙈
My big advice is to take control yourself. I went through quite a bit of investigative work with my consultant and allowed them to very much study me as to how things were affecting because of the rarity of our condition. The final straw for me was when I had part of my tongue removed to see what was happening with the ulcers.
I simply don’t allow it to happen anymore and I take significantly more control over what I do and don’t take in terms of medication and I also take more control over the way in which I’m treated within my own medical team including the GP.
There is very little that we can take control of this with condition but what I can control is what I allow to happen externally to it which effects the way my body reacts. My meds are a big part of that.
I’m not saying that I’m right but I am saying that it made me feel 1 million times better.
Take care
C
Thank you for your support you rock!
😂😂 👍👍
I have Behcet’s also. It took so long to be diagnosed. I now take Remicade and Arava. It’s the best combination of drugs I have ever taken. Thank goodness for relief!
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