Hi, I have just received an almost certain diagnosis from a dermatologist whilst I wait for my referral to London for my diagnosis. I suffer with joint pain which is most mornings unbearable. My GP isn’t sure what is the best pain relief if any and nor is my dermatologist.
any tips? Experience etc? I feel so overwhelmed I have had so many symptoms for probably about 10 years and now it all makes sense…xx
Hi There,
I also have chronic joint pain, also worse in the morning. I am often woken in the early hours by my wrists, which ache and throb. Colchicine and azathioprine help with many of the Behcets symptoms, but did nothing for the joint pain. NSAIDs don't help me either.
I have been told biologics will help with this, but they can only be prescribed by the Behcets Centre. In my case the BC did not prescribe them because my CRP was normal. The Rheumy at the BC told me that if my CRP is not elevated then the joint pain is not due to Behcets.
My CRP is elevated if im having a full on flare - but I also have chronic symptoms of mild ulcers, foliculitis and daily joint pain and at these times my CRP is normal.
Can I ask you, is the joint pain you experience chronic and is your CRP elevated on your blood tests? I'd be interested to know if other people with Behcets experience chronic joint pain but have a normal CRP.
In terms of advice - when it's really bad in the mornings (some times I wake up and feel like I am 100 years old!) the best thing to do is get straight into a hot shower. It gets the blood flowing to all the achy bits and it's amazing how much relief that brings. That's a good time to then stretch if you can manage it. It's not always easy, but my day is a lot better if I do this :O)
Hi, my CRP is normal too but my ESR is slightly raised. I have colchicine am and pm at the moment and still get symptoms but have been referred to the BC so I am hoping they will help with the joint pain. I have spoken to my GP and they have prescribed amytripine at night which just helps me sleep the pain is the same! I’m 32, get up every day like in 199 too!
I have severe chronic joint pain especially in my hips, wrists and elbows. It’s much like the behcets lesions I get on my lower back and genital area and mouth ulcers the flares come and go unexpectedly and last about a week when they get worse. I may be the only person in the United States with both behcets and pemfigoid. My treatment for my behcets has minimized all of my behcets symptoms. I would have been completely blind by now. I lost one cornea 9 years ago and I eventually had a transplant it lasted two years but it also failed due to behcets attacks and it also broke my pupil, it does not refract anymore so I wear sunglasses all of the time and I’m blind out of one eye again
I have been on 1200mil of remicade every 8 weeks the highest dose. I also take clochicine, I taper up and down on prednisone I take 40mil of cymbalta it is very helpful for pain and for the heavy joint flares that come and go I get a high dose of immediate release morphine. This is what I’ve been on for 7 years and I have minimal mouth ulcers and legions. For the pemfigoid I take IVIG infusions it takes 7 hours and I do two days back to back every three weeks which helps with the skin that falls off from the entire inside of my mouth and gums.
Mainly I commented to say I learned from an onder patient with behcets that of everything she’d tried for joint pain for decades that cymbalta and morphine with Tylenol when needed was the only thing that ever worked and when I brought it up to my doctor she said let’s give it a try. I only take it when it’s unbearable so I only refill about every three months. I hope my treatment medication will help you. Behcets and pemfigoid are not as debilitating anymore since I’ve been on this treatment. I’ll add that I also just had surgery for liver cancer in June and suffered a pulmonary embolism in September and I’m not sure if it was caused due to medication so there is that. I have another tumor now in my kidneys and if it grows more by January I will me having another surgery. I need to be healthy for 6 months before I can be considered for another cornea transplant. God bless you all. I give all of my struggles to God and He always see me through every step of my journey.
I've had joint pain that comes and goes. In a full on flare it can take off ad get worse and worse till given steroids to calm everything. When it's mild ibuprofen helps. The biggest thing I found in prevention is diet. My gut feeling is that part of my bechets is related to blood sugar. I used a continous glucose monitor as part of the Zoe study. My joint pain has gone! If I go to high on refined carbs I am likely to flare.
The glucose goddess was a useful read if you want to find out more. I follow her advice (apart from vinegar, because I worry about tooth enamel!!).
So by eating less sugar, potato, rice, pasta / timing it right, joint pain has gone.
Good luck.
I am a bit of an unusual case in that my Behcets dx is under question. Also cutting down carbs and eliminating bread for 3 months did nothing for me. I do have severe elbow pain in both arms. Whatever the cause, an old drug called amitriptyline has worked wonders on my elbows. Its an older anti depression med that is taken off label for chronic pain. It hasnt done anything for my mental health, my chest, abdominal, back, nor shoulder pains. But... I can lift some things again, turn a steering wheel. I still get some elbow pains but much much less. This drug is out of favor due to potential side effects. I took it and dont seem to have the side effects some others do. I would like to discontinue this drug but as I sit here and lift my tea cup mostly pain free... dont think Ill stop anytime soon. Good luck to all.
Joint flare-help😕
Just been diagnosed 
Pain clinic
