Recently diagnosed

I was recently diagnosed with Behçets roughly 2 months ago. I'm taking 10mg of Predisolone which has stopped my mouth ulcers for the last 4weeks thank god!! but I also suffer with styes as well which did stop coming but have come up the last week I think I may possibly have a mild flare up. The steroids haven't helped with my pain over my body mainly my back what so ever but since I've been taking them I've had agonising pain in my knee and my calf . Can anyone advise me how long it will take to help my pain or if it will help with pain also if the pain in my leg is because of the steroids?

10 Replies

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  • Hi, you need to tell your GP about the knee and calf pain especially if it's at all swollen or hot to the touch. It could be a DVT which is more common in patients with Behcets.

    Is there a plan to wean you off the prednisolone and start another medication? Usually meds like colchicine are the first line treatments. Are you seeing a Rheumy with experience in treating Behcets?

  • Hey Soph

    Sorry to hear about diagnosis. Glad you reached out us. I agree with Keyes below. I would like to add asking your doc about Nucynta. Great new pain with little to no side effects to help with pain. I also so yoga, short meditation, and aromatherathy with lavender. Lol anything.

    I hope you find some relief and know we are here for you.

    Ash

  • Nucynta (tapentadol) has been in use since the late 1980s. It is an opioid - quite a strong one - and though it is reported to be gentler on the digestive system than some other opioids it is not without side effects.

  • Thank you for your replies. I've been seeing a rheumatologist for 4 years. He has done lots of tests to try and find the problem, at one point he thought it was lupus and started me on hydroxychloroquine whilst doing more tests but I wasn't responding to the treatment and nothing changed after taking it for 8 weeks then I went back to see him for my follow up appointment and as soon as I walked through the door he said I have a diagnoses. He explained to me (baring in mind how many years I've been seeing him) that he has been asking for my genetics marker HLAB51 to be tested but it kept being refused to go forward and test because it was apparently so rare to come back positive and it did so I could of possibly got a diagnosed a long time ago:(. He wanted to wean me off the Predisolone eventually to give me steroids through IV (I can't remember what the steroid is called). His trying to give me the safest treatment as I'm only 19. As for my leg I haven't noticed that it goes hot I'll have to look out for that, it just feels very achy and it throbs sometimes it's almost as if I have a a permanent cramp.

  • Are you sure it's IV steroids as that is not a usual treatment for Behcets, is it something like Infliximab which is an anti TNF?

  • Hi. So sorry to hear that you have been feeling awful. I would suggest that you have a vitamin D test to see if you are deficient as I had terrible bone pain in my leg, feet and back they found that I was very deficient After being on vitamin D supplements for 3 months my pain has gone, so I would look into this. I still take vitamin D but only every other day now but I am tested every 6 months. Also ulcers use a natural toothpaste, I use Aloe Vera Forever Bright this really does help, natural so no side affects. I would also keep a record of what you eat and drink as this does have an effect of how you feel. Taking a probiotic does help, not immediate, but over a longer period. My first Behcet's symptoms were when I was 15 that was over 40 year ago, and I have learned listen to your body, rest is also very important so if you can do. Hope this helps, all the best. Biddy xx

  • as it goes I have had vitamin D deficancy, when I first had the blood test it was 12% so very low and its taken a little while to get it to normal I think it was 60% when it was test last and it literally took about a year to get it there after taking 20,000unit vitamin tablets maybe it will be worth having it tested again

  • yep I was about to say the problem may be simpler than you realize. I wonder if you have magnesium or potassium deficiencies? When I'm in a flare- I get low on those. I tend to think of it as my body is just using every thing it can to keep on moving.

    Anyhow, keep up on water (at

    least 72 oz per day- i didn't realize that I get dehydrated easily in a flare), eat very clean (spinach sweet potato banana broccoli salmon etc deal) and get plenty of rest.

    Good luck

  • How strange I think my potassium or magnesium has come back slightly low before but I never new why so that explains a lot! I'm seeing my rheumatologist next week so I'll ask for bloods to be tested for these. thanks everyone!

  • Most deficiencies can be corrected by diet and rest/relaxation. When my Rheum said I was low in these (bc i was extra crampy and achy too), she was ready to prescribe me pills. I was like "uhhhh can't I just eat more of these?" She told me I was the first patient who asked to correct mineral/vitamin dificiencies through diet. So she googled up high this and that foods- and boom. LOL

    PS look into coconut oil, milk, and creams. I swear by them!

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