Oral steroids for ME/CFS/CFIDS/PVFS?
BBC report today - Warning of online drugs 'danger' - says:
Mr Fraser said that even though the treatment [oral steroids] she had been taking [for self diagnosed chronic fatigue syndrome] would have been correct, the dose was too high and she had not been monitored for side effects.I've never heard of oral steroids as a treatment for M.E.
posted by Ingrid J. Jones at Friday, August 11, 2006
7 Comments:
http://www.drmyhill.co.uk/article.cfm?id=266
I don't know if posting links in comments works, might need to be copied and pasted into a browser to get anywhere. It's some info from Dr Sarah Myhill on adrenal probs in PWME & prescribing hydrocortisone for same.
Hope you're doing as well as possible and managing to keep cool through your very hot Summer!
:-)
I've not heard of oral steroids for M.E. either. But I'm currently working with a Naturopath who is targeting my adrenals by using licorice extract. I'll let you know how it goes! Hope you are doing okay (as is Ophelia)!
I'm sorry to butt in, I just wanted to pass this on:
You can now raise money for ME Research UK as you shop online, at no extra cost to you.
http://www.meresearch.org.uk/
"ME Research UK have now teamed up with Affinity Shopper, so that you can help our charity while you shop in comfort. The ME Research UK Shopping Mall is a gateway to millions of products and 700 retailers, all of whom pay a commission from sales generated via our shopping mall. This commission is then passed on to us to help fund the research we all want to see. Many of your favourites are available: Tesco, Thorntons, Currys, Boots, B&Q, John Lewis, Halfords, etc., so why not start browsing through the wide range of topics from 'Books, Films and Music' to 'Travel and Holidays', and "earn" commission for us without any cost to you."
http://www.4rcharity.co.uk/meresearchuk
Please pass this on.
Oral steroids are fairly commonly used for the treatment of CFS. Here in Finland they are just about the only treatment that you can easily get (besides antidepressants and other silly stuff). I was in about 95% remission from CFS for several months due to prednisone, but the efficacy of the treatment decreased with time and now I'm tapering off the med to avoid long term side effects. I know some patients continue taking corticosteroids for years in spite of the possible side effects, because they are the only thing that lets them live a normal life.
If you ever plan on blogging again I was hoping you would do a link exchange with my blog;
www.americanlegends.blogspot.com
I have heard of one doctor treating ME/CFS with steroids and one person was seriously ill as a result. The practitioner who was treating ME/CFS with steroids was struck off. I personally know one person with ME/CFS who was treated by this doctor and gave evidence to the GMC which resulted in this doctor being banned from practising medicine in the UK.
My understanding was that steroids aren't usually recommended for CFS/ME because we don't simply have an over-active immune system, as is the case with autoimmune diseases. In CFS/ME, some parts of the immune system are over-active but some parts are under-active, so steroids don't usually help. That's the explanation I've heard before, anyway.
You might want to take a look at my latest blog about low-dose naltrexone. It's the first treatment in 6 years that has really made a significant difference for me, and it's very low-risk. It's being used for all sorts of immune disorders, including MS, Crohn's, AIDS, fibromyalgia. No formal studies on CFS yet (of course), but lots of people seemed to have been helped by it. Maybe it could help you, too. I enjoy your blog - thanks for writing.
Sue
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