Did your symptoms begin after Glucocorticoid treatment? (POLL)

[sometexan84]

Either by injection or oral. (or nasal spray)

 

[edawg81]

Depomedrol gave my pre ME , PVFS a flair. But it was the cold i caught 3 months later that I consider my onset.

 

[BrightCandle]

Prednisone for 2.5 years anywhere up to 40mg for treating end stage gout (another bad story about the NHS in there for another day).

I came off the steroids about 4-6 months before the event that started my ME/CFS.

I remember being mildly ill with a virus of some description about a week before first symptom

The event - Started initially with extreme vertigo and racing heart all of a sudden while sat down that lasted a few hours.

For months had worsening headaches and vertigo.

Gradually developed ME over 4 years, got much worse after GET and specifically a vistibular training session 1.5 years ago and again much worse after catching covid March.

So not sure if mine "counts" but the taking of steroids and an end stage gout attack are definitely the big prior event that had disabled before ME/CFS kicked in and there were a lot of drugs beyond the steroids tried and used throughout that. They do say steroids need to be explained to doctors for something like 3 years after taking them so it is probably relevant to the starting of my condition.

 

[sometexan84]

So not sure if mine "counts"

In my opinion it counts. That sounds like a long time to be on Prednisone.

I kept having these sinus infections, and over a long period of time. I attributed that to the fatigue I was feeling at the time.

So my doc gave me dexamethasone 8mm corticosteroid shot. And later a 16mm shot.

That was precisely the time I went from "feeling a bit more tired than I should" to extreme fatigue, all the time.

Something was clearly going on before my "extreme fatigue", before I guess my "ME/CFS" truly began. But I believe the corticosteroid shots really solidified this condition for me. Who knows, it may have gone away on its own had I never had steroid treatment.

 

[Prefect]

A lot of my brain/mental symptoms relapsed after using a nasal steroid spray, which make absolutely no sense to me and is likely a coincidence, because of the minuscule amount of steroid that would enter my body from a nasal steroid. It's possible it may have had a direct path to my brain through the olfactory bulb, but I don't know enough to say if that's even plausible.

 

[BrightCandle]

A lot of my brain/mental symptoms relapsed after using a nasal steroid spray, which make absolutely no sense to me and is likely a coincidence, because of the minuscule amount of steroid that would enter my body from a nasal steroid. It's possible it may have had a direct path to my brain through the olfactory bulb, but I don't know enough to say if that's even plausible.

I was told the same thing by an ENT some years ago. I had the same level of change in my behaviour as I saw on max dose Prednisone. I didn't believe them because it was obvious it was causing severe problems and side effects just like oral steroids had.

 

[sometexan84]

I'm actually just now remembering I also had used prescription fluticasone nasal spray, which apparently is a glucocorticoid.

 

[Prefect]

But I stopped using the nasal steroid a couple of months into my relapse and haven't used it since. My relapse has lated close to 5 years. I don't know.