p8d Posted February 2, 2018 Report Posted February 2, 2018 How have any of you reacted to prednisone? I took a teeny tiny dose for two days for my MCTD flare and had high BP and HR for three days but now my BP and HR are better than they have been since I got sick. At least for the past two days. Absolutely everything else is the same, fluids, salt, supplements etc. This seems to lend credence to an autoimmune issue with me. My Drs are considering IVIG. Would my prednisone experience be indicative of any reaction to IVIG? Thanks for any comments. Quote
angelloz Posted February 2, 2018 Report Posted February 2, 2018 My experience with steroids varies. It does seem to help my autonomic issues but after a few good days it starts to affect my migraines. I too only will take a tiny dose..2.5 to 5..10 at the most. I do suspect I have an autoimmune connection. Quote
Guest ANCY Posted February 2, 2018 Report Posted February 2, 2018 I had high dose steroid infusions which I reacted negatively too. Brought on New symptoms and made other symptoms worse but it helped with my heart rate and blood pressure making it more stable. We are unclear on weather this was an "allergy", infusion reaction, or just my body being shocked by the amount. I have had two 5 day courses of ivig which helped me tremeandesly across the board with all autonomic symptoms. Was truly amazing to both my drs, family, and myself how much I responded, we had only seen decline for many many months. The benefits lasted me for about 3 months and during that time I made vast improvements. I did however have a very difficult time tolerating the infusions. I get aseptic meningitis (that's what my Neuro said, he sees it with many of his high dose ivig patients.) Also have pretty high blood pressure for the 5 days and then tapers off over the next 2 days, along with the meningitis symptoms. To me the benefit, being able to do more than just survive, outweighed the week of pain. Recently saw an imunologist who believes that my reaction may be related to my IgA deficiency so she's running more tests. She wants to be sure it's safe for me to have future ivig treatments first, then see if there is anything she finds that we can use to convince insurance of the necessity of treatment. My neurologist who ordered it the last 2 times has tried to appeal but denied because it's not a "proven" treatment. Quote
p8d Posted February 3, 2018 Author Report Posted February 3, 2018 Thank you all for the replies. @ANCY I find it very interesting that you reacted similarly to IVIG as I did to pred. The high BP/HR especially. It must be a dramatic improvement to make you deal with the side effects and still want more IVIG treatment. I will be interested in what your immunologist discovers. To be honest I am rather frightened of getting IVIG primarily because of the high BP/HR but the meningitis sounds really scary. Have you been checked for the Mayo autoimmune panel? Mine has been negative twice so it seems my Drs don’t want to battle the insurance company for the same reason of being denied. Thanks again. Quote
Pistol Posted February 3, 2018 Report Posted February 3, 2018 My specialist advised me to not ever take steroids unless I am in a monitored environment because it would " cause my BP to sky-rocket ". I have been avoiding them at all cost. Quote
p8d Posted February 3, 2018 Author Report Posted February 3, 2018 Interested, @Pistol. I will ask my neuro. Thanks Quote
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.