If you had side effects from a B12 shot, could you tell me how long they lasted and if they got worse with your 2nd (or 3rd or 4th, etc) shots? Please be gentle in answers, no horror stories. I'm too sick & anxious to deal with that. #NEISvoid #MCAS #MECFS - ThreadSky

aschmugge.bsky.social • 52 days ago

If you had side effects from a B12 shot, could you tell me how long they lasted and if they got worse with your 2nd (or 3rd or 4th, etc) shots?

Please be gentle in answers, no horror stories. I'm too sick & anxious to deal with that.

#NEISvoid #MCAS #MECFS

Comments

lovejoy93.bsky.social•52 days ago

Are you aware of “reversing out” — common with B12 deficiency. I didn’t experience side effects with injections, but it can also be a result of the type of formulation, especially if it’s methylated. You can try other versions (cyano, Hydroxy, etc).

aschmugge.bsky.social•52 days ago

Is that reversing thing basically where you get sicker before you get better?

But yeah, my local health care system is not going to be much help here as they think it's a simple "get a shot or OTC pill & no one ever reacts" after letting my numbers fall so low I'm having severe neuro impacts :/

lovejoy93.bsky.social•51 days ago

Will also add that practitioners tend to be woefully undereducated on B12 (just like ME). It requires a lot of self management unfortunately. And potentially sourcing the shots on your own if they won’t prescribe an adequate amount. I had to order ampoules off German Amazon.

lovejoy93.bsky.social•51 days ago

That’s right. I found the B12 deficiency subreddit helpful to understand the situation and the other things you should be supplementing alongside injections.

korruptednerves.bsky.social•51 days ago

I'm certainly not an expert, but I can reiterate what others have said: the current understanding is not a reaction to B12 per se, but rather a side reaction to the B12 increasing RBC (like depleted electrolytes).

I know you're struggling with your MCAS. Would you be able to tolerate Pedialyte?

korruptednerves.bsky.social•51 days ago

More directly responsive: I would receive B12 as part of the IV transfer treatment (IVIG) I was receiving. It was often a 6-8 infusion during which I mostly slept. If I didn't eat before infusion I'd feel flushed and have extreme headaches (which my Dr attributed to the B12)

korruptednerves.bsky.social•51 days ago

Grr...my kingdom for an edit button. I have no idea what the word "transfer" is doing there. Please ignore it.

aschmugge.bsky.social•51 days ago

Ha, it didn't even register to me as being there.

I guess I can at least feel lucky I don't seem to be getting the headache too (*knock on wood*), as a couple of you mentioned that.

aschmugge.bsky.social•51 days ago

No. Pedialyte has sucralose in it, among other things I react to. I've been looking for a few years now & never found an electrolyte product I tolerate. Scratch is the closest I've come but my mcas reactions are too severe at the moment for the fruit & citric acid in theirs.

korruptednerves.bsky.social•51 days ago

I figured as much. I'm so sorry. My condition is very different and eating before the B12 would alleviate my symptoms (for me, only headache, with mild "flush" or "jittery" on occasion).

I hope you're able to get relief soon and make your MCAS appointment.

aschmugge.bsky.social•51 days ago

Thank you so much for sharing your experiences and the much needed well wishes

midcatecrisis.bsky.social•52 days ago

I think @exceedhergrasp1.bsky.social had a thread about it on Twitter, not sure if it migrated here, but basically, if I understood it correctly is if B12 was the limiting factor on your body making more red blood cells, then after the shot it might make a bunch in a hurry.

midcatecrisis.bsky.social•52 days ago

And this can deplete other things, especially salts (electrolytes) and make you feel crashy.

So it might be possible that extra electrolytes would help now?

aschmugge.bsky.social•52 days ago

Thanks. My electrolytes were fine when I got the shot yesterday. I reacted in <15min and feel worse today. I can't tolerate electrolyte drinks, etc.

I'm mostly just asking my question bc I need to schedule shot #2 next week but also have to travel out of town on Thurs & not sure how to work that 🤷‍♀️

exceedhergrasp1.bsky.social•52 days ago

yes, the idea was, making more RBCs if you've been B12 deficient too long would also use phosphates and potassium. You don't have to drink an electrolyte drink if this is a worry, you could always try to supplement in other ways.

However, no idea re: dosages in this case... understudied.

aschmugge.bsky.social•52 days ago

Yeah, I suspect I'm going to have to do a lot of studying & self-directed management of this as I move forward; appreciate your expertise. But I don't think any of it probably urgently applies today, barely 24hrs after the first shot?

Mostly I just can't risk not being able to travel next week >

aschmugge.bsky.social•52 days ago

> bc it's for an MCAS immunologist and I can't safely eat, breathe, or supplement anything without getting some MCAS care & meds again finally. I just don't know if I should expect to feel even worse next round, or for how long each time (even assuming it doesn't cause probs with other levels).

exceedhergrasp1.bsky.social•52 days ago

You'd have noticed it right away if you were going to have a response of that nature, according to every patient I know who's reported one. It's VERY fast

aschmugge.bsky.social•52 days ago

If you do not have an answer for the question I actually asked, could you please just not answer?

If you desperately think I should want or need to know whatever you want to tell me anyway, just ask if I want to hear it first.

adventurist.bsky.social•51 days ago

After dengue, I took B6 and B12 and dexamethasone i/m. The brain fog disappeared. I did notice that my BP fell to a rather low value at one point, and some slight flushing. But apart from that, fine.

aschmugge.bsky.social•51 days ago

Thanks for the info, glad it helped you

adventurist.bsky.social•51 days ago

I should add, that once I tried B complex as a high oral dose, and the flushing was pronounced and very uncomfortable.

redmalicious.bsky.social•51 days ago

It’s been a very long time since my first injection, I know I had a severe headache for a couple of days, and maybe swelling in lower extremities (I had a broken kneecap at the time though)? No issues with any subsequent doses though and it’s been over a decade of an injection every 2 weeks.

aschmugge.bsky.social•51 days ago

Ooh, broken kneecap sounds super unpleasant. I'm glad the maintenance injections are working for you!

redmalicious.bsky.social•51 days ago

In a way it was lucky. Very delayed dx of pernicious anemia. If my then-employer hadn’t been so desperate to prove the fall that caused it was not a worker’s comp issue, who knows how long doctors would’ve continued to dismiss symptoms. Hope you have a better experience with your next shot.

aschmugge.bsky.social•51 days ago

Thank you!

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