Positive notes?

[azhdahak]

Curious to learn about some positive stories of long periods of remission, disease being under control and allowing productive lives.

[sam0511]

I would be interested too - I have hospital appointments next month, and I have just been able to reduce my medication. I will be asking that very question so I will post what I find.

[Alex97]

I would be interested to. Been in a near constant flare for 14 months involving my eyes. I am on my 6th different medication and the last one rituximab clearly has t worked as I have just spent 10 days in hospital with flare in both eyes. I am praying they find a medication to stop the flares before I go completely blind.

[RayRay121 in reply to Alex97]

I ended up having alergy to rituxan and it didnt work. Ask for remicade!

[Expectthebest]

Hello from the US. At age 31, I was diagnosed with BD in 2002. In Oct 2004 I started IV Remicade infusions along with Azothioprine (Imuran) and I was quite for eleven years. Now after a frustrating three years I am finally stable again. I have Rituxan infusions every 4 months and take Revlimid 5mg daily. I have learned that eating healthy. Getting solid 10 hours sleep. And living as stress free as possible truly helps. Seeking out physicians who are competent to treat you obviously the highest priority. Find your passions. Maybe it's painting, swimming, or taking a walk. Wishing you better days ahead my friend. Be well

[rooser1]

Hi there- I think I am in "remission" or at least very stable now. I was able to reduce all my medicines over the course of 5 years (there was a good 15 at one point) to nothing now. I just stopped my half dose of colcrys this past January. My last big flare was at 25, absolute garbage, lost over 20lbs within 3 weeks, meningitis, infections, almost had sepsis, chronic thrush. Just absolute garbage. I am 30 now, medication free, ulcer free, pain free for the most part (depending on diet and sleep quality) and can work out 2-3 times a week.

The turning point for me was diet. My anti fungals had stopped working, and so I had to turn to homeopathic alternatives for thrush- so I did the candida diet for 9 months. It is essentially a sugarfree, low carb diet. I felt a difference within 10 days. Fast forward to tinkering with diet and now I remain 100% sugarfree (this includes fruits too, i rarely eat blue berries or strawberries-thats it) and fill up on protein, fats and veggies, I avoid processed foods (anything out of a box).

I make sure I drink a ton of water a day. JUST WATER. I also make sure I sleep 8-10 hours a night. (I will generally sleep about 10-12 without an alarm but whatever).

It is literally all the difference. Sugars are inflammatory. Read it anywhere for yourself. Give it an earnest try for 2 weeks. It will take some time to reduce the amount of inflammation, but each day you just keep feeling better and better- you dont want to go back.

Theres a few more on here that preach diet management too, and their diets are pretty similar to mine, less processed, more natural- low sugar.

Hope this helps... I wish someone would have told me sooner that its an overall treatment of the body and mind and not just a magic pill.

[Sunset]

Selam; Behçet Hastalığının semptomları insanı yaşamdan ayırır. Semptomlarla zor bir zaman geçirdim. 1992-1994 ve 2013 yıllarında, bir üniversite hastanesinde hastalığın remisyonda olduğunu açıkladım. İlgili hekim ilgisizdi.