This Is MS Multiple Sclerosis Community: Knowledge & Support

It appears to be well accepted, that steroid use provides initial benefits, but fails in the long term. I am sure I have read how patiets start off beter than the control group, but at the 10 year mark or something their progression catches up to the control group.

Is it documented anywhere exactly what action of the steroids fail in the long term?

My experience with steroids was that for the first 10 or so years, during flares, they made me better, although I still had lingering symptoms that never totally cleared up each time.

The last time I was put on them I had so many side effects that I decided I would never take them again. That was 1987. Another thing about taking steroids is that they decline in effectiveness over time and end up not being of much benefit for symptom relief.

Also, probably due to steroids, I now have mild osteoporosis. They are more useful for very serious flares, which people with SPMS don't have anyway.

gwa

I have been using oral prednisone 75mg for 2-3 days on a relapse, and it still stops a relapse. Its the only thing that does. My question was more on the trials that have been done where patients are on then 24/7 (lower dose of course) even during remissions.


I have never had an infusion, only oral prednisone. The only side effects I have had were difficulty sleeping, mild osteoporosis and once i developed a very mild "moon face". Someone asked me if I put on weight, they saw it in my cheeks.

As for the mild osteoporosis,I was given a once weekly treatment of a drug called fosamax which returned me back to normal range. Its a bit of a wonder drug for osteoporosis. Maybe you should look into it. The only side effect I have herd from it is stomach upset, which never bothered me.


Yeah, thats what i understand, but what i dont understand is what stops working?

I took Fosomax for over a year, but finally quit it because of the pain it caused in my legs.

Since I stopped taking it, there have been reports that it causes jaw disintegration in some people. I will not go back on it. Now I have upped my calcium and Vitamin D3 levels rather than take Fosomax.

I was on a LOT of ACTH during the first two years of my diagnosis. This med causes your body to make its own cortisone and it was the med of choice for relapses during the 70's and 80's.

It also causes osteoporosis, in my experience.

gwa

osteoporosis. how much d3 and calcium and magnesium do you take daily gwa?

My doctor put me on 2000 mg of D3 daily and 1200 mg of calcium, which have another 400 mg of D3 in them and I think 200 mg of magnesium per 1200 mg of calcium.

My osteoporosis hasn't changed much in the past 3 years, according to the bone scans, so I am hopeful these supplements are helping me.

gwa

hey that's great news gwa! what is it like to have osteoporosis, can you feel it or is it just greater susceptibility to breakage?

i gather you've seen the research backing up the 4000 D3 daily number? and you know that efficiency of D3 conversion to its active metabolites 25D3 and 1,25D3 decreases with age?

gwa, I am guessing by bone density scans you are talking DEXA?

I was sorry to hear your bad experience with fosamax. The only prob I had with it was having to take it once a week on an empty stomach. It was regular, but irregular in how infrequent. I was on it for 2 years, but was pretty close to normal bone density after 1 year.

Before I was put on fosamax, I was put on a medication called Rocaltrol, which is an "activated vitamin D". I am suprised its never came up in Jimmylegs hunt for D. But it may be an option for yourself if you havent already discussed it with your dr.

Hate to repeat myself, but I still dont understand what stops working with steroids after long term usage?

did too! 1,25dihydroxycholecalciferol = calcitriol = rocaltrol. just didn't get to the brand name per se.

we were just talking about calcitriol the other day in the context of pregnancy. i was musing about nutrition during and after pregnancy and how that might affect MS in the 3rd trimester. someone else found a study that tracked calcitriol and found that serum levels more than doubled in the third trimester.

I thought your stuff was compounded?

ya my d3 liquid is from a compounding pharmacist and it's just cholecalciferol not the steroid hormone calcitriol. i just meant, i knew about calcitriol from my search.

Cure O asked:


I don’t know exactly what actions of the steroids fail over time and hence don’t know the answer to your question. But, based on what I’ve read about the stress hormone cortisol, I’ll offer some speculation not about what fails in steroids over time, but what may fail in people with MS over time, i.e., people with MS may have defective glucocorticoid receptors and prolonged steroid use may exaggerate that problem and render steroids ever more ineffective and potentially damaging over time. Some abstracts……

This first one is a theory about MS but I think it speaks to the topic.

The Role of Stress-Response Systems for the Pathogenesis and Progression of MS

Earlier research notes that corticosteroid resistance increases over time.

Corticosteroid Resistance in a Population of MS Patients

And Lynda Carol recently alerted us to this:

Irreversible Neurological Worsening Following High Dose Corticosteroids in Advanced Progressive MS

Again, I don’t know if defective and/or insensitive glucocorticoid receptors in people with MS are why steroids tend to become ineffective over time, but there seems to be a body of research that could at least lend some support to that idea. I do think there’s been some research that found defective glucocorticoid receptors on autopsy in people with MS.

Hope this helps a little bit, even if it doesn't directly answer your question.

Sharon

Duplicate Post. Sorry.