Need advice please...: I had my major flare out... - Behçet's UK

Behçet's UK

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Need advice please...

Ellaine_Grace profile image

I had my major flare out for a year now. I already had recurrent mouth ulcers and bumps on my legs since I was young. Last year, genital ulcers started as well as the worst flares on my chest and back area (acne-like bumps). I was in misery and so lost as to what is happening to me. So I started researching, yes, researching... i could have gone to a doctor, but i doubt they would have an answer to this disease anyway (as this is rare, no doctors in my locale have seen it). So I started taking pred 10mg a day, eliminate chicken and other allergy-inducing foods. Learned to de-stress myself (if its possible) and overall, it got better. But not entirely. My mouth and genital ulcers haven't stop coming back since my major outbreak and its depressing me. I did went to a doctor at last when I was feeling secured with my disease and she denied me the use of pred (when pred is the only thing that is letting me live a little bit normally) So i ditched her. So I continued searching and noted that colchicine is widely used and with positive effects. Could I use it with pred? How do I take it? I'm planning on presenting my case back to my doctor so she could see how much I need relief from this disease. Thank you.

9 Replies

Hi,

I am very concerned about your self treating for a disease you haven't been diagnosed with! PREDNISONE is usually started at 5mg. a day. I have Neuro Behcet's and I am on 10mg. a day, only after many years at 5mg.

Yes, it sounds like Behcet's. But IF you researched it, you had to have seen the International Criteria for confirming Behcet's disease.

Have you kept a journal of your symptoms? Or has your Doctor seen and documented your symptoms for the International Criteria?

If not and you are suppressing your symptoms with 10mg of PREDNISONE, you may not ever get a diagnosis! No doctor will say it is confirmed Behcet's if you don't meet that Criteria.

PREDNISONE is a dangerous drug, it causes weight gain, thins the skin and is hard on the heart, and other organs to name a few.

IF you did your research, you saw, there are medical pages that describe current, recommended treatments. I suggest you print out those and the International Criteria to make your case to your Doctor. Ask for a second opinion if you don't agree with your current Doctors diagnosis.

I also live in a small, rural town. ER doctors ASK ME, "what is it?", "what does it do?" "and how do you spell that?" So, I know how you feel. But, I found doctors!

BEHCETS.COM has a list of U.S. doctors that treat it. If you give your general location someone may know of a doctor in your area.

But self treating for a disease you haven't been diagnosed with, is dangerous and will prevent a diagnosis, that will get you the treatment you need and want! PREDNISONE can mask eye problems and you could lose your vision permanently.

There are a number of drugs used to treat Behcet's. Which drug, depends on the current symptoms. Ulcers, eyes, (and which part of the eye), skin or Neuro problems, etc. Each demands a different medication or mix of multiple medications. Only a doctor that understands pharmacology can decide and prescribe the right meds for you.

I know this is not the answer you wanted. It is the responsible answer you needed.

I believe most of the people here, will support what I have written to you.

There are no short cuts or easy answers when it comes to Behcet's! We have all traveled the long, rough road to diagnosis and treatment of Behcet's disease.

Best of luck and health to you,

Cindy

CALIFORNIA, USA

Hi, I was actually diagnosed with behcets by the doctor but refused to give me prednisone at first. She took biopsy samples from me but from experience, results will come back for a few months, maybe a year if im lucky. I know the risk of my actions and i greatly appreciate your concern... but when im in so much pain and nobody take me seriously, i have to do something.. I'll talk to my doctor about this. thank you so much

Get your sed rates tested and if high go see a rheumatologist and an opthomologisthASAP. Any lab or doc can run your blood test for sed rates. Good luck, and be proactive !!!

Omg, a long road indeed to diagnosis. I wasn’t diagnosed until age 43. The disease has been eating at me for my entire life, and my doctors suddenly knew why I had severe mouth, then as an adult genital ulcers and leg lesions. Destroyed pituitary and hypothalamus because the vascular inflammation prevented blood flow. Damaged pancreas (exocrine insufficiency) and heart. Oddly, an extremely intuitive, talented endocrinologist/pituitary specialist at Cleveland Clinic made the initial Behçet’s diagnosis. She sent me to rheumatology at Cleveland Clinic for final confirmation. Years of medical testing was available for the doctors to pull together and do the necessary tests to narrow down the type of inflammatory process.

Concerning self-diagnosis, prednisone is king because it disables many inflammatory pathways. Unfortunately, if you take prednisone for longer than a few months, it can start affecting and even damaging a healthy endocrine system. In women, it pulls calcium out of the bones. In some people, prednisone can even make them psychotic.

Leg Ulcers, if confirmed to be autoimmune, can potentially be treated very well with a fairly new drug called Elidel cream. It disables cellular inflammatory response and allows lesions to heal. If you’re diabetic, leg lesions could be of a different type that would require professional wound care. Plaquenil (quinine) helps tremendously with oral and to a lesser degree genital ulcers. I sure wish you the best of luck. This forum is such a godsend. We can all put our heads together to find the perfect treatment!

Dave

Hi Elaine I’ve been on Colchicine for about 6 years and I believe it has helped me I’ve had no ulcer since I started on this medication. I do hope this helps you and others.

Dear Ellaine,

I also highly recommend you to be under a rheumatologist's supervision and please do not self-treat!

Then if your diagnosis is definitely Behcet's, Colchicine is the first choice.

It usually keeps ulcers and bumps away as long as they are nor very severe. it is started bu 1mg daily and the most common side effect is GI upset. You also need to check regular liver function tests.

However, if you have still flares while on colchicine, your doctor will put you on Prednisolon or immunosuppressive drugs.

You should definitely consult a specialist as behcets can involve eyes badly if not you are not treated well.

Hope you get well sooon!

After a long treatment of cyclosporine, I was given colchicine for almost ten years to treat a unilateral uveitis (

Eye’s film inflammations ) when my condition has improved . It was effective in controlling light inflammations. You should check your liver regularly . colchicine may affect severely your liver if it is already in a poor condition.

Today, I no longer use it. My informations has stopped seven years ago.

I agree with stopping prednisone. Its a band aid. I know it makes life bearabke but its masking the true triggers. Colcrys is good. It helps. The other thing that helps that youve already started doing is diet. You said you cut chicken (?) - cut sugar. All forms of sugar. Its proven inflammatory. Ever since i started a candida diet five years ago (i had excessive thrush on top of ulcers and meningitis and etc etc) i got my life back starting in 10 days. Keep up on sleep, not play on phone or watch tv but actual sleep.

(Please click on my profile where ive posted a ton of responses about diet in depth)

CUT SUGAR. SLEEP.

Keep us posted and remember this isnt forever!

Hi. Yes I have used Cochicine for a couple of years now and it seems to keep things in control. However the best thing I have discovered is the Keto diet which has improved all my symptoms and allowed me to cut my colchicine in half......

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