Is most everyone with Behcet's on some type of an immunosuppressant long-term? What is your experience? Thanks

[Rose138]

(One doctor wants me on azathioprine for two years to settle down my system and put things into remission hopefully and my "second opinion" doctor doesn't feel the need at this point.)

[Trusting_In_Jesus]

Cyclosporine. It's a great help. Along with vitamin d, multivitamins, and triamcinolone for mouth ulcers (clears up ulcers in 2-3 days)

[MrsBeau]

I've resisted it so far and will continue to do so until I feel I have no choice.

[Hidden]

No one can tell you if ‘almost everyone’ is on long term immunosuppressant. Treatment type and duration varies from patient to patient.

As far as I am aware there isn’t a set duration within which a particular treatment will work, so the 2 years your doctor mentioned is a bit confusing. I suggest you get that clarified.

It sounds as if the two docs need to speak to each other and to you, to discuss all treatment options. Being a multi system disease often means more than one doc needs to be involved, so it makes sense for them to talk to each other.

Ultimately, it’s your decision so perhaps getting all the facts and then taking some time to consider them would be useful.

Meanwhile, the Society have a treatment factsheet available to download:

behcets.org.uk/information-...

Behçet’s guide for Treatment

[Ktmc99]

I was on azathioprine for 5 years with no problems. Didn't put me into remission but did control symptoms to a point they were manageable. I had to come off it as my bloods started to do strange things: my mcv went up and my neutrophils plummeted. I also took colchicine which helped with ulcers and low dose of amitriptylene which helped with pain. I'm currently off all meds as I'm pregnant but plan to restart all once baby arrives. Don't close your mind to the benefits of long term immunosuppressants. My quality of life improved immensely. Hope you find some resolve. X

[billi]

Hi myself like Kim did try azathiaprione for a few months but had to have blood checks (every month I think.....I have been suffering with BD for 28 years so my memory is a little slow.lol) anyway after a few months I was taken off this med. After trying at least 30 plus different treatments whilst waiting 12 years for a diagnosis I was put on Cochicine. Worked wonders for me and and I stayed on it for 5/6 years. During this time I had no side effects and more or less symptom free. My Prof and I decided I should come off it and I continued in relatively good health for another 2/3 years. Now another 3 years on I am back on it and so far so good. This is an excellent site with useful info, good advice and many stories but you must decide for yourself what is best for you. Did the doctor say definitely 2 years or hopefully as Tigerfeet said it is strange to gives such advise as you mY decide the side effects you may incur are worse than the disease symptoms and also with this particular medication you must have regular blood tests and only in this way can a decision to continue use can be established dependant upon blood results. Also you do not mention how long you have had BD or other meds you have tried or symptoms you are having just now. Anyway talk with the docs, get all the facts on this drug and take time to make your decision.

Hope this helps

Hugs and Smiles

Billi

[Hidden]

I am currently taking Azathioprine, Colchicine, Amitriptyline and Topiramate to control my symptoms along with pain killers and Omeperazole. Taking the cocktail of drugs is making a huge difference to my quality of life. I am struggling with joint problems at the moment but on the whole my overall symptoms are very well managed. Of course everyone is different, so there is no telling whether the same meds would have the same effect on someone else. Hugs. Clare x x

[devonshiredumpling]

I am on virtually the same cocktail as Clare above, plus Methotrexate. I have Ranitidine instead of Omeperazole, which my body doesn't like, and I have motilium for nausea/vomiting. My quality of life is greatly improved,although I do suffer with joint pain and fatigue. I'm hoping that some of the fatigue will go away as my body gets used to the Topiramate, which is new to me.