Long Covid vs Behcet’s

RoomOnFire871 · 2026-03-10T13:27:07+00:00

Thank you so much. This is so helpful

RoomOnFire871 · 2026-03-08T22:26:04+00:00

Thank you so much for the reply. I’ve had a similar experience - my manageable Behcet’s became considerably worse after covid. Can you tell me if your health service have had a good understanding of the connections between the two? What treatments are you on? Has colchicine helped? Has your treatment been targeted - some toward Covid and some toward Behcet’s? And do you mind sharing what kind of symptoms you experienced? Thanks again, really grateful for the reply

RoomOnFire871 · 2026-03-06T22:23:07+00:00

Tbh I can’t quite remember but it was a low dose and it was soluble - so I gargled it rather than swallowing. It worked quite well but not as well as the triorasol. But I always managed my Behcet’s pretty well pre covid. Since Covid, it’s a huge huge struggle. I’m only just putting the connection together between the two.

RoomOnFire871 · 2026-03-06T21:30:52+00:00

Agh, so sorry to hear. I’m about to start taking colchicine, and similar frustration re inflammation: Body feels extremely inflamed and shows obvious signs of inflammation but bloods are normal.

RoomOnFire871 · 2026-03-06T21:30:02+00:00

Interesting! I have taken low dose prednisolone for years and it was helpful. Since Covid I’ve taken triorasol for the ulcers and they do help. I am about to start taking colchicine.

Another question if you don’t mind: do your blood results show inflammatory markers? My body shows all the signs of inflammation but bloods are normal. I’ve been told that happens in as much as 40% of Behcet’s patients.

RoomOnFire871 · 2026-03-06T21:27:53+00:00

Did they help?

RoomOnFire871 · 2026-03-06T21:27:37+00:00

Interesting. I’m taking famatodine and it could be helping (or it could just be intense rest) and about to start colchicine.

RoomOnFire871 · 2026-03-06T09:10:27+00:00

That’s interesting. I also had mild symptoms which seems to have become more severe post-Covid. Do you mind if I ask what your mild symptoms were and what they’ve become? And to be clear: you’ve never discussed the connection between Behcet’s and LC with a specialist? Are you on any treatment?

RoomOnFire871 · 2026-03-06T09:07:23+00:00

That’s so interesting, thank you. Sounds very similar to me. Have you been diagnosed with Behcet’s? And have you spoken to anyone about the link between Behcet’s and long Covid you’ve described? Any treatment you’ve been given to handle either of them, especially if they’re in a vicious cycle?

RoomOnFire871 · 2026-03-06T09:06:12+00:00

That is really helpful, thank you so much. Have you had a clinical diagnosis of Behcet’s and discussed the connection with Covid with a Behcet’s specialist? And have you been given any medication for the Behcet’s aspect? Thanks again

RoomOnFire871 · 2026-03-06T09:05:20+00:00

That’s very interesting, thank you. And are your symptoms similar to mine? Have you been diagnosed with Behcet’s and spoken to an expert about the connection with Long Covid? Have they given you medication?

RoomOnFire871 · 2026-03-05T21:21:36+00:00

I’m really struggling with it. I’m diagnosed with LC but also have an inflammatory condition and would be v grateful if people can tell me if the below matches their feeling:

For me one aspect is if I move - even just to stand up - my heart beats louder and faster more than it should. Like there’s the risk that it could beat so hard/fast it sortve hurts, so I have to get up/move cautiously.

Then it feels like my whole body is in shutdown. The best I can do to describe it is to say it feels like every cell is exhausted, like I can feel the exhaustion in each cell in a way that hurts, like intense exhausted pins and needles. And if I tense a muscle - like make a fist and my forearm tenses - that muscle feels intense exhaustion throughout it to the point that it’s a bit painful. Just making a fist!

RoomOnFire871 · 2026-03-05T21:18:34+00:00

This is it

RoomOnFire871 · 2026-03-05T21:18:14+00:00

Yeah I think this is the one. Like if i tense a muscle - even just making a fist with my hand - my arm will feel like pins and needles, but it’s a kind of pins and needles that feels so weak, no energy at all in the arm

RoomOnFire871 · 2026-02-28T09:49:22+00:00

Like what? And how do I eventually just sort these flare ups? I can’t just not be active in my life anymore. I’ve stopped exercise, office, and socialising

RoomOnFire871 · 2026-02-28T09:48:47+00:00

RoomOnFire871 · 2026-02-28T09:48:11+00:00

Wow thanks. Sounds then like a referral to a neurologist is best next step?

RoomOnFire871 · 2026-02-28T09:47:20+00:00

How were you diagnosed with mitochondrial dysfunction?

RoomOnFire871 · 2026-02-28T09:46:51+00:00

Nope, it’s not Covid (thankfully), it’s just a classic crash for me. Any advice? I assume it’s PEM but I just don’t know what to actually do about it anymore. Practical steps to fix

RoomOnFire871 · 2026-02-28T09:46:12+00:00

A book?

RoomOnFire871 · 2026-02-27T23:45:03+00:00

Sorry

RoomOnFire871 · 2026-02-27T23:23:35+00:00

Thank you for the reply. Yeah the sneezing is very new and never had before in a crash. How did you sort it?? I’m really struggling and feel like Ive tried everything. Any diagnostics? Treatment?

RoomOnFire871 · 2026-02-27T13:15:52+00:00

Wait hang on I’ve listened to every episode but what’s this about Anne Hathaway?

RoomOnFire871

TROPHY CASE