Woolie
Senior Member
- Messages
- 3,263
I've read a few posts on this forum about short courses of prednisone/prednisolone giving people a complete remission from their ME symptoms while on it. But I was always wary about the long term use.
However, I've recently had a severe flare of my illness that's kept me in bed for the last two months. And since I'm about to lose my job, a doctor friend of mine recently suggested pred as a last ditch option.
The improvement was rapid. I started with 20mg in the mornings, and the left started to kick in that evening. Now in my third day, I'm back at work and even walking the dog! Doc friend here wants me to stay on 20mg for 7 days, then edge down, 1mg at a time each day till the symptoms return, then edge back up again the next day (this protocol, she says, she modelled on polymyalgia rheumatica). And so on, aiming for a stable condition on a dose under 10mg, only for as long as needed.
Since I'm a relapsing-remitting case, we hope that I will be able to eventually ease off it altogether and just keep another rx for the next flare.
My doc friend thought the instant and marked response I showed to pred was very informative in itself, suggesting strong support for an inflammatory process underlying my MECFS.
CFSers always been warned off prednisone, because of the side effects (weight gain, osteporisis, moon face). And I've heard some here have a had bad crash after coming off it, and even tapering might not be enough to avoid that. But I do think you have to weigh costs and benefits. For me:
Costs: weight gain, osteoporosis (actually, both are risks of being bedbound anyway, so not much to lose there). Possible trouble further down the line when I try to get off it.
Benefits: can work, can exercise, also gives my body a break from the relentless inflammation, which I'm sure can't be good for you. Plus mental health benefits of getting up and about again, spending time with partner, kids.
The equation is still positive for me.
Its a hard one to assess. Of course, doctors who think our symptoms are psychogenic, or simply not as severe as we claim, are unlikely to recommend this treatment under any conditions. But what about those who see the illness as inflammatory/automimmune? Would they still be so cautious?
Would love to hear anyone's thoughts/experiences.
@Jonathan Edwards, if you have time, I wonder if you might have any general comments on the potential pros and cons of this type of treatment for MECFS? (just generally, of course).
However, I've recently had a severe flare of my illness that's kept me in bed for the last two months. And since I'm about to lose my job, a doctor friend of mine recently suggested pred as a last ditch option.
The improvement was rapid. I started with 20mg in the mornings, and the left started to kick in that evening. Now in my third day, I'm back at work and even walking the dog! Doc friend here wants me to stay on 20mg for 7 days, then edge down, 1mg at a time each day till the symptoms return, then edge back up again the next day (this protocol, she says, she modelled on polymyalgia rheumatica). And so on, aiming for a stable condition on a dose under 10mg, only for as long as needed.
Since I'm a relapsing-remitting case, we hope that I will be able to eventually ease off it altogether and just keep another rx for the next flare.
My doc friend thought the instant and marked response I showed to pred was very informative in itself, suggesting strong support for an inflammatory process underlying my MECFS.
CFSers always been warned off prednisone, because of the side effects (weight gain, osteporisis, moon face). And I've heard some here have a had bad crash after coming off it, and even tapering might not be enough to avoid that. But I do think you have to weigh costs and benefits. For me:
Costs: weight gain, osteoporosis (actually, both are risks of being bedbound anyway, so not much to lose there). Possible trouble further down the line when I try to get off it.
Benefits: can work, can exercise, also gives my body a break from the relentless inflammation, which I'm sure can't be good for you. Plus mental health benefits of getting up and about again, spending time with partner, kids.
Its a hard one to assess. Of course, doctors who think our symptoms are psychogenic, or simply not as severe as we claim, are unlikely to recommend this treatment under any conditions. But what about those who see the illness as inflammatory/automimmune? Would they still be so cautious?
Would love to hear anyone's thoughts/experiences.
@Jonathan Edwards, if you have time, I wonder if you might have any general comments on the potential pros and cons of this type of treatment for MECFS? (just generally, of course).