Steroids and hyperadrenergic POTS

[Pistol]

Hi - I have hyperadrenergic POTS with both hypo-and hypertension. I am currently well controlled and my BP has been stable, thanks to IV fluids on a weekly basis as well as a myriad of meds. I recently experienced a severe double ear infection and developed an autoimmune reaction ( also have AS and now possible Sjogren's syndrome as well as other AI symptoms ). I will see a rheumatologist in the bear future but in the meantime am taking Turmeric ( cannot take NSAIDS ) and now am considering a trial of steroids. Here is where my question comes in: has anyone on this forum that deals with BP fluctuations from hyperPOTS had any negative effects from steroids? My autonomic specialist has warned me in the past that steroids would most likely send my BP through the roof, so I have been avoiding them. However - my symptoms are now serious enough that I want to try a trial of Prednisone or Medrol dose pack, despite the warning. Since my BP has been stable for over 6 months I am hopeful that all will be well but on the other hand I do not want to wake up the dragon ( meaning trigger POTS ). 

Any Input, warnings, encouragement or experiences? Thank you in advance. 

[Clb75]

I don’t have hyper pots but do have labile BP. Certain meds can send it through the roof as you say. I get a dose of IV steroids after my ivig infusion. The first dose I started at half the regular starting dose but it still shot my BP up by 20 points and stayed elevated for hours. It took 3 months for it not to react and to titrate up to the regular dose. I just started an oral steroid before the infusion but didn’t react to it, probably because my system was already used to it. 

Granted an iv dose is more potent than an oral dose, but I would be careful. Can you start at a lower dose and taper from there? My oral dose was supposed to start at a 40mg taper over 4 days but I started it at 30mg the first time, then went to 40mg the next time. 

[toomanyproblems]

I have Sjogren's syndrome along with several other autoimmune conditions. Because one of them is Addison's, I have to do my own steroid merry-go-round on literally a day to day basis. My Drs just give me plenty and cut me loose and trust me to manage myself. I've been doing this over thirty years. Your individual response wrt BP will be dependent on many factors so it's really hard to predict. I likely have hyper POTS and my BP can be either too low or too high seemingly completely unrelated to external circumstances. I'm currently in a too low BP phase and I've been taking either increased Pred at about 20mg or injecting extra hydrocortisone at 10-30mg (and sometimes 50mg) depending on how I'm doing. Sometimes it raises my BP, sometimes not at all.  (I'm taking the increased steroid for other symptoms not the low BP; they just happen to be accompanying the low BP.) 

I also get IVIg every three weeks, which, that alone tends to raise BP because it's very viscous. I also normally increase steroid around that time due to brain swelling I get as an adverse effect. Sometimes the steroid as IV before infusions (though it's still just my solu-cortef which is not as strong as the dexamethasone the above poster might be getting), sometimes oral (pred), sometimes injection solu-cortef as needed.  Again, sometimes all of it causes increased BP for days sometimes not. Like cycle before last right after IVIg my BP was usually 140 something over 100 something first thing in the morning and the diastolic went higher as the day went on. This went on for days. This time it's 100 over 60 type of BP first thing in the morning and can drop to cause presyncope and SOB as the day progresses. When my BP decides to drop, it doesn't fool around. I've had times where I've gotten numbers like 50's over 30's and this is once I've made it back to the bed from a syncope episode so who knows how low it actually was. And more recently was passing out and managed to catch it at 52 over 40 while still standing.  

Sorry, I'm rambling, but my point is, my BP can vary wildly and extra steroids may affect is at times and at times it does nothing. Even extra florinef does nothing at least not for days. Another point is my Sjogren's waxes and wanes too, irrespective of steroid dose. Because of this, I don't know if I could tell if the steroid was affecting it or not. Mine may be improving because of IVIg but I became very symptomatic and peaked while on IVIg so IDK.    

Good luck with your decision. I'm not sure trying it would throw me into anything bad for a long period of time. Maybe it won't do it to you either. The Sjogren's symptoms can certainly be way more serious and debilitating that just dry eyes and mouth like you read so I understand.  

[toomanyproblems]

I should add that some steroids have less mineralocorticoid activity than others. The ones with less will probably affect your BP less. However, the ones with less are stronger and last longer like dexamethasone, so there's a trade off wrt to weaning time.

[Pistol]

@Clb75, @toomanyproblems: thank you so much for responding, you have given me a lot to consider before talking to my doc tomorrow. I truly appreciate your Input!!! 

[Guest KiminOrlando]

Ditto what @toomanyproblems said. My doc gives me a script for steroids and I take as much as a need when I need them. He trusts me to figure it out day to day. Autoimmune diseases with hyperPOTS is tricky. Buy a BP machine just to keep an eye on things. What happened with me (usually), is that the better my autoimmune disease is doing, the better POTS is doing. Maybe that will happen with you. I ended up on DMARDs for autoimmune so that I don't have to use steroids as much. 

Hopefully you get good results from the steroids and they can move you to DMARDs with steroids for flares.