Corticosteroids Patient Views

Prednisolone helped my fatigue & headaches too, but a couple of months after taking it I was back to my usual LC symptoms. (And it can’t be taken long term). 😢

Long story.. but

The patient has been on steroids for two years. They were originally put on them in 2022 by a doctor trying to treat their long covid. They were on 40mg for several weeks, then the doctor rapid tapered them which caused their brain fog to begin (very similar symptoms to what they’re having now). They were hospitalized in a psych unit and went back on the 40mg, then tapered more slowly.

Then they started feeling better and after getting down to 7mg after tapering for many months, they had felt 90% recovered from all long covid. So they stayed on the steroid because at that point they developed adrenal insufficiency. Fast forward to July 2024, they had lots of stress which caused LC relapse, including diarrhea every day. Their endocrinologist said if having diarrhea, double the dose of steroids until it’s gone then taper back down. So they took 14mg for 8 weeks and just started tapering but now they gotta taper slowly because they still feel awful and at this point they don’t know what’s from long covid, or adrenal insufficiency. They’re a mess.

I started on 24mg of methylprednisolone, which will taper until I’m off…so far my symptoms are still gone. I also take vitamins and ferritin. No difference in any symptoms until I started steroids.

My doctor said steroids might help temporarily, but would make me feel a lot worse once off them. They have a “crash” effect.

Really helped with my fatigue, headache & PEM. But as it can only be taken for a few weeks my symptoms came back after 2 months.

I’m now trying to work out if there are other similar drugs or supplements that will have a similar effect.

My CFS had been getting a lot better, to the point where I could go on walks for 15-20 minutes and not crash. After doing this for a few weeks I cautiously went for a 5 minute run. It felt amazing, but then I spent the next three days in bed. That was about three weeks ago, and that lowered my baseline very noticeably. Last week I went on a short walk and had a crash.

I had been turning down dates because I felt so shitty, but yesterday I thought "fuck it I'll try steroids" because I really wanted to go on a hike with this one girl. I had tried prednisolone before and it seemed to prevent PEM to a degree, and reduce my MCAS to a degree, maybe 50% or so, but also made me feel kinda weird. I had some vials of dexamethasone (2mg) on hand, and I'm used to injections, so I self-administered the 2mg intramuscularly in the morning. Felt it kick in about 3 hours later. Then I went on what was going to be a 2-hr hike, only the date went really well and we ended up hanging out for 7 hours, walking for 6 of those hours, and also eating pho. I had barely any reaction to the pho, felt amazing the entire hike, was on peak game (happy, energetic, charming) in a way that I hadn't felt in years. No negatives whatsoever, I just felt exactly how I wanted to feel.

When I got home I was super sore, so I horked down a gluten-free pizza (normally would destroy me, as usually I can only tolerate meat and rice, but only had a very mild reaction), and had two protein smoothies.

Tried to sleep and only got about 3 hours. The one negative effect of the dexamethasone -- steroids always give me insomnia, and this one has a long half life.

But I woke up and felt GOOD. No PEM whatsoever, no leftover inflammation from the pizza, and only the faintest muscle soreness. (For context, the most exercise I've had in the last 8 months before this hike was a 20 minute walk, and those only very rarely.)

It's too bad that it's a bad idea to take steroids chronically, because injected dexamethasone was MAGIC. Yesterday was the best day I've had since getting long covid.

Like some of the later commenters I have tried short - term (5-7 days) Prednisone doses (30 tapered to 10 mg) a few times. The corticosteroid was initially prescribed for a bronchial condition at which time I regained my energy and a clear mentation (my LC symptoms). It works miracles for my energy and galvanizes my brain But once off I return to my LC baseline And even with short spurts they have side effects. I've also used Amphetamine 10-20mg on performance nights (I'm a musician) which also awakens body and brain. This response is not meant to suggest my choices have general integrity. The benefit ( temporary energy and a clearer mentation) outweighs the cost for me (the side effects which are easily researched)

Seemed to jumped start my recovery. Initial boost in energy but then might have overdone it and crashed. Afterwards seemed to be on an upward trajectory of recovery, but it hasn’t been linear. They did cause sleep disturbances.

Have you ever taken prednisone? I know that it is a heavy drug, but a week course at 40mg pulled out me (the patient) of hell. I’m still not well, but I went from not being able to eat and having to be carried to the bathroom because every little movement was causing me severe rolling PEM, to being able to walk around my house a little, shower once a week on my own, and read again. I’m spending less time in the dark with earbuds and a eye mask as well so major improvement.

I’ve been on the prednisone for 1 month now but have tapered to 5mg with no crashes.

So....there are steroids that can reduce the inflammation especially help to rebuild the blood brain barrier. The patient was on them for abt 6 months. might have helped but steroids giveth and they also taketh away. I ended up with avascular necrosis (where the bone dies) in 6 joints. Did they heal my brain? The patient is still disabled but instead of having severe bedbound MECFS and breathing problems - they are more moderate and the breathing problems have resolved. The patient is still relatively house bound. It can be very difficult to get off of steroids if you have LC - my cardiologist said (she worked in covid ICU) because we are already low in cortisol, which is what steroids are - a hormone. The patient is nowhere as sensitive to light and sounds (although they still bother them) but last year being in a doctor's office would result in a crash immediately bc of the florescent lights.

And the patient still has POTS. For brain fog the thing that has helped most is guanfacine. For POTS is beta blockers, water and salt.