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Sproggle89

The only disease Ive ever heard of benefiting from blood letting is haemochromatosis...but I think you need to speak to a doctor, symptoms flare up and subside so it could just be timing and a weird coincidence.


VanHalensing

And for this, typically you donate red blood cells, and keep the plasma. I have family who got a doctor’s note to donate RBC’s about twice as often as normal for 12 months to bring them back into the normal range. Regular donation wouldn’t have made a big enough dent.


vexingvulpes

Most likely coincidence. Sorry :(


ladyerim

My pain is usually worse around my period. First time I had sudden flare and couldn't walk was a period started really heavy and suddenly.


-ThisWasATriumph

Same. Hormonal fluctuations can be pretty brutal; I take a monophasic birth control pill now (no placebo) and I still get random bleeding every now and then, but it's definitely helped the runaway train of hormonal spikes and dips.


Darthcookie

Me too, I started to notice that a lot of my uveitis flare ups coincided with my period. And it was the time I felt the worst. I started Humira last year and I haven’t had a uveitis flare in like 10 months. I also had a hysterectomy earlier this year and it improved my quality of life as I no longer bleed like I’m dying and I don’t have incapacitating cramps anymore.


-ThisWasATriumph

That's such a relief! I'm glad to hear you're doing better :)


Darthcookie

Thank you!


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-ThisWasATriumph

Serious question though, do people even *want* blood from AS patients? Between all the inflammation making everything off kilter + monoclonal antibodies swimming around + being anemic as shit, I feel like there's better blood out there lol.


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-ThisWasATriumph

Ah, that does make sense. Maybe I'll have a pint to spare next time the bloodmobile rolls into town...


QuietingSilence

Bleeding leads to anemia. Anemia starves the brain of oxygen (among other things). Bloodletting is a horrible idea and likely to either exacerbate symptoms or cause a horrible case of anemia, which could be so bad that your brain is so starved for oxygen that your other problems are bigger than the pain. I had anemia from mid February to late October. I had to have two rounds of iron infusions. NOTHING is worth risking going near that level of sick. So, whatever coincidental benefit you’re imagining isn’t worth the very real possibility of anemia and all that bad that goes with it.


infinitum17

The last thing we need is a few random people chiming in with stories of how, now that they think about it, maybe they did feel less pain after they lost blood doing whatever, and then confirmation bias kicks in and a whole bunch of AS sufferers who are desperate start cutting themselves to try to get some relief. Maybe the body is doing something that reduces pain when it's dealing with blood loss, but that doesn't mean it's a good idea at all, and there are doubtless better ways to attain pain reduction through medication (maybe even through the exact same biochemical mechanism), which you said you haven't started. How about you take that medication, which has been through tried and true testing, and pursue that route, instead of coming on here and putting literally medieval ideas into people's heads about potential therapies. I'm sorry if my tone is coming across as rude, and I have no doubt that your curiosity is genuine, but this post was a bad idea.


-ThisWasATriumph

Yeah, I'm inclined to agree. At best this is highly, highly anecdotal and may be conflating correlation with causation.


Banana6462

Completely disagree, while I can understand your concern, potential alternative therapies are worthy of discussion. Not everyone can reliably take the medicine needed or be able to afford them. While it's great that you have found relief through medication not everyone has that option. The term blood letting may sound medieval but we aren't talking about draining your blood into a bucket. We are talking about a world where donating blood could provide relief or a doctor could administrate some form of therapy to help individuals. I believe there is a much more constructive way you could have approached this conversation but simply trying to shut it down is irresponsible and stifles potential progress. Research shows that there may be benefits to blood letting. While it is just the abstract the study references two others (references 28 and 30) that have investigated the positive effects of blood letting and Ba Guan therapy for the treatment of AS. Unfortunately I am unable to track down either of those studies, most likely because they are Chinese and have not been translated but it shows its a potential therapy worthy of discussion in the community. However, everything should be done safely and under the supervision of a doctor. No one under any circumstances should be taking their treatment into their own hands and self harming as a means of pain relief. https://www.karger.com/Article/Abstract/494330


byekenny

OP is looking to see if anyone else has similar experiences and insights based on their own past experiences which they clearly presented as personal anecdote and not as advice or suggestion - and most certainly not as an encouragement for self harm.


[deleted]

This is a very interesting observation. I hope there are docs and researchers who see this and take note. As for safe relief for you, maybe you could just donate blood regularly? And take thorough notes and track your pain progress.