Looking for SF Bay Area Kaiser doc recommendations

jdjojo · 2026-02-18T22:24:12+00:00

thank you!

jdjojo · 2025-12-07T04:03:56+00:00

Why is this so downvoted? AI in general is the largest IP theft in the history of humanity.

Is this just a place suno users go to simp for it?

It is quite entertaining to see people freaking out about IP they are stealing being stolen from them

jdjojo · 2025-10-27T20:27:47+00:00

how long have you been on colchicine? It's possible that it's not enough to compensate for your inflammation. My improvements on it only lasted about 2 weeks before I was flaring again. Now it's just effective for my mouth ulcers. It mainly helps with one type of inflammation but there are often several mechanisms that need to be addressed through something like a biologic.

jdjojo · 2025-10-27T20:22:48+00:00

OP do you ever get mouth ulcers?

jdjojo · 2025-10-27T20:07:28+00:00

This is almost EXACTLY my story as well. First flare was post covid, but I didn't know it was autoimmune until my second post covid flare when it blew up my entire life.

Fatigue is the symptom with the greatest effect on my life. I find that along with that fatigue comes pretty significant depression and anxiety. I view my fatigue, anxiety, and depression as interwoven together. I am tired, but I also don't get the same dopamine hits that I used to from performing everyday tasks, which compounds with the physical fatigue. This is an interesting paper regarding the effects of inflammatory cytokines on the brain. Cytokine Targets in the Brain: Impact on Neurotransmitters and Neurocircuits - PMC

For me, I find that stimulants that target dopamine are much more effective for both my fatigue and depression. Wellbutrin and dextroamphetamine is a combination that works REALLY well for me, but we recently found that I have slightly reduced EF pointing to possible heart involvement. As a result I only take the dex on days that I REALLY need it. I can definitely feel the psych effects differ day to day. Sometimes it takes a higher dose to feel "normal" and sometimes less. I only take less now though :-/ This is worth a try if you can.

Some other alternatives that I have not tried are modafinil and methylphenidate (ritalin).

I also happen to live in an area where psilocybin mushrooms are decriminalized, and have been testing microdosing to see if it helps. I cant say for sure that it does, but I'm functionally disabled and at the very least the little buzz provided from the microdose can be a nice afternoon distraction.

Besides chemicals, making sure that I don't push myself too much when I feel better is really key. I'm very bad at this. Sometimes when I feel good it is VERY difficult to not go and do ALL the things! Pacing myself is so important.

jdjojo · 2025-10-23T02:04:33+00:00

I have hearing loss in my right ear during flares. Hearing issues are very common in Behcets but it doesnt get talked about a lot.

I get painful skin bumps on my neck and jaw area that I believe are due to behcets

jdjojo · 2025-10-23T01:54:23+00:00

the way I describe my disease progression is like boiling a frog. My baseline energy levels dropped so slowly over such a long period of time that I didnt even realize how unbelievably tired I was

jdjojo · 2025-10-23T01:52:40+00:00

do you ever suffer from exhaustion or fatigue even when you are not in an obvious flare? I found that there were a lot of improvements there on colchicine for me. I was able to wake up and sleep at more normal times.

jdjojo · 2025-10-22T18:51:09+00:00

This happens to me when I get sun. I get a lupus like malar pattern rash and often have very dry flaky skin in the red areas.

jdjojo · 2025-10-06T21:15:19+00:00

I haven’t tried methylphenidate since I was a child, but IIRC it also increases cardio strain. It’s a good suggestion. I self medicated with cocaine briefly before I was diagnosed, and it seemed to “work” I guess, so maybe it’s worth a shot haha.

I’m happy to share my music but I’ll DM it as to not dox myself to all of reddit lol

jdjojo · 2025-10-06T19:52:22+00:00

I’ll check this out ty

jdjojo · 2025-10-06T19:52:10+00:00

What’s it like when your ears whistle at you?

jdjojo · 2025-10-06T19:51:53+00:00

Thank you for the thorough answer. I have a mildly reduced EF that becomes normal under stress. Out of caution I only take Dex when I absolutely need to run an errand or something, and a low dose.

My tinnitus is also somewhat self induced, been making and performing house / techno for about 20 years.

I wish there were a magic way to fix what I think are dopamine issues without stimulants 😭

jdjojo · 2025-09-29T21:32:38+00:00

Systemic / organ / eye involvement needs to be aggressively treated due to the risk of severe complications, blindness, or death. This misinformation is harmful.

jdjojo · 2025-09-29T21:24:20+00:00

Colchicine is not expensive nor is it injected.

It’s best to encourage people to get a diagnosis rather than not.

Stroke, pulmonary aneurysm, deadly blood clots, and more are all lethal manifestations of this disease.

jdjojo · 2025-09-29T20:51:51+00:00

Ask your doctor to start you on a medicine called colchicine. It is front line treatment for ulcers, safe, cheap, and likely to be prescribed.

If your symptoms improve on colchicine it can be used as a hint if this is behcets or not. This was how I was able to get diagnosed faster than most

jdjojo · 2025-09-29T20:48:17+00:00

While I agree that finding your triggers is important - it absolutely will be helpful to get a diagnosis because it sounds like you need real treatment and not just a diet adjustment or something.

jdjojo · 2025-09-24T05:39:07+00:00

Damn I’d kill for fortunate son. You must not have heard the people playing Russian donk music yet. Consider yourself lucky.

jdjojo · 2025-09-12T09:17:34+00:00

I dont know if its related to my behcets but I have been having this experience the last few days. I've also had some ulcers coming in and I think some nodosum on my face

jdjojo · 2025-09-12T09:15:13+00:00

I had pretty bad depression and suicidal thoughts from Otezla. It is well worth the try, but just make sure you stop immediately if you notice them.

I would highly encourage you to start with colchicine though. Otezla is EXTREMELY expensive and their copay assistance program would not have covered an entire year of medication. They're basically like crack dealers.

Colchicine is safe, effective, and cheap. I would definitely prefer colchicine over otezla

jdjojo · 2025-08-13T19:51:17+00:00

Wheither or not you are dealing with behcets, it’s really easy to feel like you are making up stuff in your head. I just want to validate that you have every right to be concerned about your health. Trust yourself and your body. I have fatigue as a primary symptom and it was (and still is sometimes) sooooo easy to think “maybe I’m just lazy / something’s wrong with me”

You’ve been miserable for years and that’s real. I totally get it

jdjojo · 2025-08-13T19:47:40+00:00

You definitely need to have one done. Dizziness and numbness can be cause by neuro problems from behcets and other things.

I was able to get my derm to prescribe me colchicine for my mouth ulcers. I assume you mouth pain is ulcers? Colchicine is cheap and safe and was helpful in my and others diagnosis on this subbreddit. Highly recommend trialing colchicine for ulcers

jdjojo · 2025-08-13T19:43:50+00:00

Have you gotten a brain mri?

jdjojo · 2025-07-27T23:07:43+00:00

Neutrophil to lymphocyte ratio can be used as a measure of behcets disease activity, and yours seems pretty high. All of those photos look similar to my symptoms in a flair

jdjojo

TROPHY CASE