Poll: Has an immunosuppressive dose of Prednisone helped you in the short term?

[Jesse2233]

I wasn't sure how to answer your survey. I've been on hydrocortisone and dexamethasone, but they sure haven't helped my POTS, though they've helped other symptoms...

Interesting... which other symptoms did it help? And how long were you on dex?

I was actually on 20 mg per day when I developed ME. I took it for around 3 months in total.
I didn't have obvious POTS when I first became ill, but it has developed since.

I'm sorry to hear that Anne. Was your onset associated with an infection?

Dr Chia has found that when patients are given steroids during an enterovirus infection their odds of developing ME increase.

 

[Learner1]

Interesting... which other symptoms did it help? And how long were you on dex?

Hydrocortisone keeps me from being in a heap on the floor and helps clear my brain fog. I take a replacement dose, 25mg, divided throughout the day.

Still have POTS, though...

I took dexamethasone for 3 days around chemo and am taking it to reduce symptoms around IVIG.

Learned not to take ANY more than I need... Spent a week not sleeping after chemo one time. It's powerful stuff.

 

[anne_likes_red]

Interesting... which other symptoms did it help? And how long were you on dex?



I'm sorry to hear that Anne. Was your onset associated with an infection?

Dr Chia has found that when patients are given steroids during an enterovirus infection their odds of developing ME increase.

Yes, but not an enterovirus in my case. ...Well, unless I caught one at some stage during my hospital stay which is not inconceivable. I was being treated for active congenital toxoplasmosis affecting the optic nerves. The prednisone was to help prevent scarring. I had to take prednisone many times subsequently too for the same issue. I remember a negative effect on sleep quality, and some fluid retention, but not much else- negative or positive!

 

[hamsterman]

I take it every Sunday, 25 mgs. I use it for PEM protection... since I pile on all my activities (including working out) on Sunday. I basically have a ME-free day. I've been doing this for about a year now.

If I take it more than this, I'd have to taper off... and it will start screwing with my cortisol feedback loop.

 

[rosie26]

I was given prednisone in my first year of severe onset. For me it felt like it were ramping up my already ramped up ME. I was prescribed 5mg (4x daily) but the first 5mg dose made my ME even more unbearable. Not a good tablet for me and I never want to take it again.

 

[anciendaze]

I once had a reaction to a fairly big shot of Prednisone which was given so that I could leave on a trip to Europe. (Before the shot I was unable to clear my ears because of allergies, which might have resulted in a burst eardrum.) It felt good, but scared me because I didn't sleep for two days. I'd say I was hypomanic, and was just glad I didn't get hospitalized for mania.

You do not want to use steroids long term. There has been a great deal of medical experience about this. One example was a disaster in treating TB. Patients felt good, but the disease advanced. (There are some reasons for giving steroids temporarily to keep airways from closing in some TB cases, but this is otherwise a bad idea. You only do this in order to keep the patient breathing until other interventions work, and you may lose such a severely ill patient anyway.)

I couldn't really participate in the poll above. I have neurally-mediated hypotension, not POTS. This symptom did improve while Prednisone was in me, but I was worse afterward.

 

[Jesse2233]

I take it every Sunday, 25 mgs. I use it for PEM protection... since I pile on all my activities (including working out) on Sunday. I basically have a ME-free day. I've been doing this for about a year now.

If I take it more than this, I'd have to taper off... and it will start screwing with my cortisol feedback loop.

Very interesting. Are you able to gain muscle mass and endurance with your Sunday workout?