anaphylaxing

Did anyone else's POTS symptoms start while they were on steroids?

what were their thoughts on your peripheral neuropathy? Did you have any abnormal testing related to that? What symptoms do you have?

Thanks for sharing!

I'm at Mayo and they've said I had POTS but I haven't been referred to the POTS docs because I'm on steroids so they wonder if it's masking or aggravating things so want me to go back home. I just don't know if I'll ever be able to come back it was such a fight to get here.

I'm interested in other people's rates pre and post meds.

I'm usually 130s when I first stand up if I move around/walk it stays high 80s to 110. If I so slow stairs 120 -130. When I lie down its 50s-90s.

I just wonder what everyone else is like?

I have only been going through this for 6 months and it is devastating. I totally sympathize with you. I try to tel myself it could be worse. It is hard not to resent ppl when you can tell they don't understand how hard it is for you. Hang in there and I wish you all the best

Oh my gosh tarastomsgirl that sounds horrible! But interestng to hear someone else had so much trouble. I've switched to hydrocortisone. Was your tachycardia worse with standing etc because I now fit POTS criteria but they're not sure steroids are making it better/worse.

I am also on an inhaled steroid but just weaned off and had a hard time with that which is only 200 micrograms a tiny tiny amount which makes me wonder if i'll ever handle the 5 mg hydrocortisone (just over 1 mg prednisone equivalent) drops.

Are you off now? Do you feel okay? Was the crisis after you went off steroids? Hope you're doing well

You sound pretty sick I think it would be worth going in for some IV fluids. Is it possible that you have caught a bug? Any fever or other symptoms? I'm newish to this but my biggest flare was when I was sick with a virus. What is your highest heart rate?

Usually the HR goes faster to compensate for low BP so the low HR could mean your body just can't keep up...

I think you should be somewhere that they can monitor you while they try to make you better, but YES IT ***** that ERs etc know so little about POTS.

Hang in there and definitely slap on those compression socks!

Flop

I was put on steroids for anaphylaxis and had ongoing allergy symptoms requiring a slow taper then had issues at low doses due to symptoms of adrenal insufficiency and tachycardia. Now I fit the POTS criteria and its one of the most disabling parts of everything that's going on. I'm wondering if this could be a transient phenomenon of steroid withdrawl. I'm on hydrocortisone at 30 mg and tapering 5 mg every 2 weeks (HC is 1/4 as potent as prednisone so it's roughly 7.5 mg of prednisone). I'm also MCAD vs mastocytosis so who really knows. I just REALLY hope I can get off steroids but I'm scared the POTS will flare.

Oh my gosh I just checked out the yahoo group and it feels like a family reunion of people I must be related to! Thanks SO much.

Yes I hadn't thought about it but a new doc mentioned my hypermobile joints. I have double jointed elbows and fingers and loose skin. It always came in handy for dancing and I never thought about it, but NOW it seems it may be relevant. Others in my family are like this and have no issues though

oops forgot yes I'm doing high salt, fluids, compression stockings. Reluctant to try new meds at the moment given I react to everything. I can walk mostfor a few hours each day and my hear rate is 90-120. If I sit or lie my heart rate normalizes when things are good. If I try stais or anything it's 120. When I wake up and first stand up its usually around 130. I know I was moving a lot less during my recovery so deconditioning could be part but I'm walking tons now and it's not quitting. I think the plan is to wait and see what happens with the rate as I taper...hope it doesnt'get worse and hope my adrenals restart~

I started with anaphylaxis that wouldn't settle so was limited in mobility for months then had sudden onset POTS symptoms and adrenals wouldn't wake up during steroid taper. Tried florinef---major rash on top of everything. So its a confusing picture of definite allergies/mast cell issues +/- dysautonomia among other things.

What are your dysautonomia symptoms?

Thanks everyone.

Julie---Yes I had an MRI of my brain and Cspine that was normal but it wasn't a dedicated pituitary study.

I have only had symptoms of AI since trying to taper since starting steroids for the anaphylaxis. I didn't have cortisol/ACTH checked prior so the presumption is my insufficiency is related to the steroids and I might have a chance at recovering but they can't do those tests unless I try to taper. Alternatively, I might have had pre-existing adrenal insufficiency or permanent damage from the steroids.

I've been told I have MCAS or indolent systemic mastocytosis the only way to differentiate right now would be BMB which I'm not healthy enough for.

I have atarax for PRN so perhaps I could try it at night.

Yes, the epi that send me into Vtach was IV.....I tolerated all of the IM doses but they weren't having as much of an effect so IV was attempted. In retrospect it was totally unnecessary and I suspect too high a dose and given IV push. It's hard to think about it.. .

Julie- what is your experience with the neuropathy? Does it guess worse over time? Does it come and go ? I think the steroids have masked mine but they're still there. I need to be reassessed by neuro once/if I can get off steroids.

I just had a similar thought. I'm early in my pre official diagnosis phase, but have out of whack mast cells, nerves, and now heart rate etc. I was put on steroids which improved my numbness/tingling, but it was on steroids that I developed heart rate/POTS issues so I wouldn't say they're helping that....now that I'm tapering the steroids the numbness is getting worse making me think it was inflammatory/possibly autoimmune.

There's so much medicine doesn't know and has yet to learn. It's frightening!

Long story, 6 months ago had tingling in hands and feet, muscle twitches and night sweats. Had a CT had anaphylaxis to CT contrast was biphasic, got too much epi went into vtach was in icu etc. Had ongoing rash, chest tightness, itching for months started on ketotifen, cromolyn, cetirizine, zantac, singulair which helped. Failed steroid taper after 3 months due to adrenal insuff (prednisone). Was switched to hydrocortisone but still failing tapers. Allergy symptoms improved. Started having tachycardia worst on standing. Tried florinef, had a fever and a flare of allergy symptoms.....was sent away for further investigations. Normal tryptase, urine histamine etc. Haven't had BMB. Allergy symptoms improved over 3 weeks but still have tachycardia---? pots and am on a slow steroid taper and hoping adrenals will recover.

Interested in input. Realized POTS may be adrenal, mast cell, separate or a combo but interested in your input especially Julie/Mack's mom if you can!

Still have tingling in hands and feet.

Realizing not much is known about most of this and I'll have to do a lot of figuring on my own.