Behcet's Disease Support Group
Behcet's disease (also known as Adamantiades-Behcet's disease), is a chronic condition due to disturbances in the body's immune system. This system, which normally protects the body against infections by producing controlled inflammation, becomes overactive and produces unpredictable outbreaks of exaggerated inflammation. This extra inflammation affects blood vessels.
Hi to all...
I am new to Daily Strength but not new to Behcet's unfortunately. I was on the internet searching for some kind of hope...lol I have a dr appointment this wed and need to do something different as my meds are no longer cutting it. Currently I am on Enbrel, pred, relafin,trental, and klor-con(potassium). I have done methotrexate, cholchicine, Imuran, dapsone and others in the past. My mouth sores, vag sores and skin leasions are basically under control, but the fatigue, headaches, and joint and muscle pain are not. I also run a fever almost everyday. I was thinking of suggesting to my dr antibiotics...minocycline or Benzathine...anyone have any suggestions or experince with these?? Any help would be so appreciated!!!
I am new to Daily Strength but not new to Behcet's unfortunately. I was on the internet searching for some kind of hope...lol I have a dr appointment this wed and need to do something different as my meds are no longer cutting it. Currently I am on Enbrel, pred, relafin,trental, and klor-con(potassium). I have done methotrexate, cholchicine, Imuran, dapsone and others in the past. My mouth sores, vag sores and skin leasions are basically under control, but the fatigue, headaches, and joint and muscle pain are not. I also run a fever almost everyday. I was thinking of suggesting to my dr antibiotics...minocycline or Benzathine...anyone have any suggestions or experince with these?? Any help would be so appreciated!!!
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
You have been on several medicines I have been on. I know one Behcets patient on Minocycline...he is not on the other medicines currently, so I do not know if there would be any drug interactions.
How long have you had Behcets? Do you have Neuro-Behcets also?
After failing all other treatments, I have been on all the medicines you have named other than Enbrel , as it is not recommended for Neuro-Behcets. Have you tried CellCept , Arava or Remicade. Remicade might be helpful for the joint pain, but used in combo with MTX. I am not a doctor I can only speak from my experiences.
I am now on Cytoxan with Prednisone, using the Vasculitis Protocal and this has helped a lot. They generally do not use this until one has failed all other treatments and I have had TIA's and DVT and a PE. Therefore, as one can tell I have a severe case of Behcets.
I have a friend on Simponi and she is doing well on it. She does not have Neuro-Behcets though. She uses MTX injectable with it. To add a little information about Cytoxan, it should not be used for long periods of time; it is a chemo medicine and one should have Mesna with it to protect ones bladder and kidneys. I have an IV once a month and will be on it only for 6 months.
Just some ideas.
Have you found a solution since you posted this message?
Good Luck!