Inflammation

[Frogge]

I have had Behcets for 30 years but it wasn't identified until about 15 years ago when I had a pseudo tumor cerebri caused by a venous sinus thrombosis along with month sores, genital sores, and so forth. Recently I started urinating straight blood and GP said it must be UTI and gave me antibiotic. After 5 days, no change, so into another GP in the same practice who said she thought it was kidney stones and gave me Flomax to try to flush them out and ordered an ultrasound of kidneys. In the meantime, my feet and ankles, and legs started swelling, big-time, to the point that I can't wear shoes and my pants are too tight around my ankles and calves, so I had to buy different pants. Ultrasound of kidneys showed nothing. Called GP about swelling and was told to keep my feet up, drink lots of water, and limit salt. Keeping feet up is impossible as I am an elementary teacher and on feet all day. Anyway, 3 days later, had to go to ER for unbelievable kidney pain. Still urinating straight blood. They did CT scan and found 6 kidney stones. ER doctor said stop taking Coumadin for a few days and maybe blood will stop. Did that and blood did stop. Asked about my feet and ankles and legs. He said he didn't think it was caused by kidneys, didn't know what it was, and that it would probably go away. Now it has been 5 weeks since swelling began. Feet, ankles, legs, and now knees, and hips, and sometimes neck are tender to touch, hurt to walk on and just as swollen as before, maybe more so. When it is the worst, it also makes my brain foggy and I feel a headache coming on by the end of every work day. I am also VERY fatigued. I feel like my muscles are totally weak and I am unable to do the things I normally do. Have any of you experienced this and what do you do about it and which doctors do you see about it who don't just blow you off?

[Ashveer]

Hello; for inflammation, fatigue, personally, we use dietary Turmeric drink, about 2 twice a week, about 1/2 tstp. turmeric (little) w/few extra virgin coconut/olive oil, and filtered water about 1/2/ cup, boil, and drink this...natural inflammatory and anti bacterial that is great in our household., it all starts with our blood vessels - having rich anntoxidant diet/therapy is the key to Behcet remission - I have reand many research articles online from doctors who actually treat behcets that suggest that antioxidant therapy due to oxidative stress of cells, is strong possibility to control behcets, also eat Natto Fermented Beans, that have essential blood vessels repair Vitamin K2....I do wonder as many doctors also report that bechets activity is until age 45, approx. 15 years of disease activity...then the gene slowly burns out...has this happened somewhat in your case? Our son has brainstem involvement...wth systematic behcets...we are very devasstated...since 2017, but he had bechets at age 24 2012.

[Frogge in reply to Ashveer]

Thanks for your reply. I have had bouts with big Behcets flares in 1990,2005, and now. Each has lasted a couple of years. I have been dealing with it for 30 years so far. First problems started Jan. 1990, but in between those years, things have not been too bad. When it is flaring, however, it is definitely a proactive thing to do.

[Ashveer in reply to Frogge]

Thank you Frogge, that is informative as doctors in Turkey wrote to me, that behcets disease stays in activation until age 45. Your letter is what I am most fearing for my son, as systematic failures lead to Brain Flare w/damge which he now has already, altered speech, right side ataxia, and 57% visual in left eye....on azaithpoirne, 150mg. but only they say for another 5 years at most...we are scared that it does come back, and he won't be on medication at that time, Colchicine has been recommended but that I think is not enought to pervent a brainstem flair....I hope those tips will come in handy for you, we are on that course now, one other article on behcets also promotes antioxidant therapy via diet, to decrease oxidative stress......I wish you well, and please keep up the anti inflammotyr diet, that will attempt to rebuild the smooth muscles endthelial cells in the blood vessels...diet is crucial in behcets...

[Lovingdragonflies]

Thank you for sharing this experience. I have continual ongoing problems with this and each time now I’m told it’s not kidney infection or stones. I’ve had kidney infections snd been hospitalized often in the past. Now I have frequent blood and it gets to the point where I stop urinating. I get told it’s my fibromyalgia. Im meeting this week with s Behcet’s specialist Im really curious to see what she says. I’m on Remicade and it still hasn’t improved that part.

[Frogge in reply to Lovingdragonflies]

Wow! That's awful! I also have fibromyalgia. I think it is not a fun combination with Behcets because you always hurt. My doctor put me back on Colchicine. It is VERY expensive here. $1000 a month. My insurance pays just under$800, but$213 a month is still a lot especially with all the other meds and Dr visits. I am looking into getting it from Canada. I have started having the bleeding way more often. I hope this isn't indicative of more to come. Good luck to you! I hope they find something that helps you better. Keep me posted if they ever do find something that works well!

[Lovingdragonflies in reply to Frogge]

Wow. I thought you guys had everything paid for with NHS. That is awful. Colchicine over here for me used to cost nothing on my plan, but my Remicade now that I’m on Medicare, which is government assistance and I buy a supplement costs me $800 per treatment. It was costing me $800 every 2 weeks for a bit. My husband makes good money. The only way that they say you can do it without paying all that money is to get divorced. It doesn’t seem right huh. You shouldn’t have to worry about that stuff on top of your health.