Dysautonomia And Steroid Use

[Zap]

In light of the discussion in my other thread addressing Immunology and Rheumatology, I thought it would be interesting to poll on the use of steroids.

Please leave comments if there is anything noteworthy about your response to the polls, such as other underlying conditions that indicate a reason for a steroid Rx.

Thanks

[Jan]

I am taking Florinef which is acually a corticosteroid so I am not sure if I was supposed to answer this. I don't know what medications are considered glucocorticoids.

[green]

I use testosterone, but I don't think its a glucocorticoid.

[Zap]

Whoops - I should have been clearer, since Florinef is so prevalent for POTS. I had intended the poll to specifically be for glucocorticoids only (Prednisone, Dexamethasone, etc.)

Florinef is primarily a mineralocorticoid (with little to no glucocorticoid effects), so its behavior is quite different.

[khaarina]

I was on a 5 day Prednisolone treatment for a skin allergy. It not only cured my skin problems but I felt quite a bit better in general. I told my doctor this, but he didn't seem to think much of it so I assumed it was all in my head. Do you know of any good articles about Prednisone and POTS that I could share with my doctor?

[EllenD]

Thanks for this poll, I've wondered about this for a while. I was given high dose prednisone for a bad reaction unrelated to POTS and all of a sudden I had absolutely no POTS symptoms! Unfortunately they came back as soon as I stopped the steroid. I've asked my docs about this and was told that it was probably just fluid retention from the steroid but I've tried Florinef which causes fluid retention and it didn't help like the prednisone did.

[Zap]

I wish I had some articles, or I'd be pushing even harder than I am now... I'll be sure to post if I find anything at all that might be useful.

Ellen - I honestly think that many of us have been fed a line of BS from doctors over this. "It's probably just inflammation" to "It has no clinical significance". Nothing else has helped me to nearly the same degree. I also think that not enough have come across our conditions, so they can't realize what they don't see firsthand either.

[Relax86]

I used hydrocortisone which helped tremendously. I was extremely cautious with it; and often felt like I could benefit from dosing higher but I understand the adrenal consequences and shot low with my dosage. I used it for a few weeks and felt much better at 10mg at 8am, and 5more at 1pm...I weaned and felt so much worse in less than 2 weeks. I jumped back on it and stayed with it for about 5 months.....successfully and slowly weaned. I would use it again in a second. It was the only med that made me feel like it was fixing the problem and not just treating a symptom.

[Guest Alex]

Just curious,

what kind of symptoms do you have that might warrant a steroid prescription? I'm starting to wonder whether this is an avenue worth pursuing for me.

Thanks,

Alex

[RichGotsPots]

My POTS presents with very bad breathing problems, so in the ER last year they gave me high doses of prednisone in case it was asthma. They tried to tapper me off it and meanwhile i got the worst GERD ever which other doc told me it can cause. Meanwhile I though it may have helped a little to I pressured a pulmonary doc to leave me on a high dose around 50-60mg/day and so i was on that for a month and didnt see any improvement then when I told other dr they said i better get off it asap or risk getting addisons. It took me 5 months to tapper off it, my endo thought it was too late and I had Addison's, but finally Im off it for over 7 months without any noticble change..

[Relax86]

I originally got my HC script from a Dr who practices blended medicine (holistic with western) and she prescribed for adrenal fatigue. In the beginning I really did fit those symptoms to a T. My symptoms seemed to morph quite a bit t/o the year but main symptom was low BP, breathing OI which the HC seemed to help. Recently have some positive autoimmune findings and it looks like the HC is beneficial for that as well. So all around this was a good drug for me which I took seriously and limited as best as I could. It was very helpful and I actually feel better all around on it than off.