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MS treatment: Steroids and ME

Seven7

Seven
Messages
3,444
Location
USA
As I have been awaiting for my MS tests to come back, I noticed how similar ME and MS are, and I was wondering, why don't we use the same treatment while on relapse and see if it helps.

I feel inflammation in the brain and spinal cord, so I was wondering if anybody here has tried steroids (the one they use in MS) as treatment and has it help???? Crazy questions???

7
 

Nielk

Senior Member
Messages
6,970
I'm also very interested in the connection between MS and ME.

What type of testing did you take, Inester7?

I have been on Prednisone twice for sinus infections and both times I felt better in general with all my ME symptoms.
I asked my doctor to put me on a constant low dose but he refused because he said that the side effects are too harsh.
 

Seven7

Seven
Messages
3,444
Location
USA
Harsher than this decease???? I have a lumbar puncture and what they call a blood MS pannel (not sure what they do) All I know they draw soooooo much blod and spinal fluid. When I get the results back I can tell you what they tested for.
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
That is why I treat my nerves. Diet and supplements. The Dr. Wahl's Mitochondria book is about that. Nerves are one big part of my illness.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,074
Location
australia (brisbane)
all chronic conditions can have adrenal fatigue as a consequences, so low cortisol and low dhea as well as other hormones. treating this can help. we need healthy amounts of cortisol to control inflammation.
 

Shell

Senior Member
Messages
477
Location
England
I've been on a lot of Prednisolone over the last couple of years and have been taking steroid inhelers. Now on Seretide which is a steroid with something else inhaler.
I was taking 6 days of Pred every couple of months for over a year alongs side antibiotics for repetitive chest infections. I can't say I felt "better" as such but then antibios always make me feel cruddy anyway so it's difficult to say. The steroids did help me breath better for a couple of weeks after I'd finished them.
The side effects of long term steroids are pretty nasty - not least of which is what they do to your already damaged immune systems.
I understand the question of what could be worse the treatment or the disease. But I've come to the sad conclusion that doctors are grossly under educated in medicine, so they simply don't know how to use medication for the individual patient.
 

SOC

Senior Member
Messages
7,849
I've been on a lot of Prednisolone over the last couple of years and have been taking steroid inhelers. Now on Seretide which is a steroid with something else inhaler.
I was taking 6 days of Pred every couple of months for over a year alongs side antibiotics for repetitive chest infections. I can't say I felt "better" as such but then antibios always make me feel cruddy anyway so it's difficult to say. The steroids did help me breath better for a couple of weeks after I'd finished them.
The side effects of long term steroids are pretty nasty - not least of which is what they do to your already damaged immune systems.
I understand the question of what could be worse the treatment or the disease. But I've come to the sad conclusion that doctors are grossly under educated in medicine, so they simply don't know how to use medication for the individual patient.

Shell: I went through something similar for a long time -- multiple pneumonias, chronic bronchitis, asthma dx (which is probably wrong). I was finally tested for chronic Chlamydophila (formerly Chlyamydia) pneumoniae and given clarithromycen. It's not uncommon in people with ME/CFS (probably because it's one of those intracellular pathogens we seem so susceptible to). GPs usually don't consider or treat it if it hasn't progressed to a major pneumonia event because "your immune system should handle it". :rolleyes:

Might be worth looking into. http://www.cpnhelp.org/

The best progress I made with all that pneumonia/bronchitis trouble was with inhaled hydroxy-B12 and glutathione with a nebulizer. I wasn't using it for that, it was one of those surprise benefits.

Re: steroids

Long before I was dx'ed with ME/CFS, I would get "hyper-immune" so that I was reacting to everything. A Medrol Dosepak was like heaven. I always felt much, much better in all kinds of ways for a couple of months after taking a round of that. My GP would prescribe it 1-3 times a year. I suspect that I was in the early, pre-energy failure stages of ME/CFS and Medrol was having a big anti-inflammatory effect which then made me feel much better.

I was also given routine inhaled steroids for the chronic bronchitis, which helped with that some, but didn't make me feel overall better.

I started developing cataracts at a relatively early age, probably due to all the use of steroids, so I'm glad I don't need them anymore.

I'd still use steroids if I really needed them, but I avoid them whenever I have other options. I would carefully weigh the risks of decreased immune function and increased cataracts against whatever it was that the steroids were supposed to help.
 

xks201

Senior Member
Messages
740
I'm on the most potent steroid there is (dexamethasone). It'll cut whatever inflammation you have but it will not get rid of the fatigue associated with the bad bacterial toxin buildup.