Just say no to steroids

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Just say no to steroids

Postby Cece » Tue Aug 13, 2013 12:44 pm

http://multiple-sclerosis-research.blog ... esearch%29

Thrombosis of the cerebral venous sinuses is an uncommon but serious adverse reaction to high dose steroids used to treat MS relapses. Dr. Sclafani recently shared a case study of a patient with thrombosis of the transverse sinus chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-7845.html#p213172 and while I don't know if steroids played any role in the development of the clot in that particular case, it had consequences for the routing of venous blood drainage. It is not good if already impaired venous drainage is worsened. According to Dr. Giovannoni who is a respected UK neurologist in the above link, high dose steroids can hasten the recovery from a relapse but they don't make any difference in the final outcome at six months. Therefore if a relapse is mild or moderate, it should be considered whether the steroids are worth the risk.

In the context of CCSVI, it would be particularly bad to acquire a venous sinus thrombosis.
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Re: Just say no to steroids

Postby 1eye » Tue Aug 13, 2013 1:23 pm

Incidentally to this, I might warn anyone receiving titration by oral prednisone that at least on the Ontario Health Insurance Program, in my Canadian case, the titration made me feel much worse. I am not aware if this is still standard practice, but it was worse than the effects of the exacerbation. I had previously received very large doses of oral steroids. I had taken them with no titration, with good results. I had the impression the titration was done to soften the effects of the IV steroid, because I had never had it before with the oral drug.

At any rate I blamed my bad reaction, not on the IV steroid administration that preceded it, but on poor quality of the hospital-provided prednisone. This was an anonymous pill, that was obviously a generic. I think the use of generics for this purpose is dangerous. I would have preferred to have stopped cold-turkey.

Of course, there are other problems with the very high doses given to halt an exacerbation. It can make your stomach bleed (if given orally), and soften your bones, to name two.
"Try - Just A Little Bit Harder" - Janis Joplin
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Re: Just say no to steroids

Postby Cece » Wed Aug 14, 2013 10:13 am

It was worse than the exacerbation itself? That's awful.
Yeah, another possible risk of steroids is AVN or untreatable bone degradation of the hip.
"Just say no to steroids" is an overgeneralization. But it seems important for pwMS to be empowered and know that saying no is an option and that there are risks to steroids and not much benefit. Six months after the relapse, it doesn't matter if you took steroids or not. The benefit is only in the short term.
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Re: Just say no to steroids

Postby CuriousRobot » Mon Aug 19, 2013 1:48 pm

Interesting.
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Re: Just say no to steroids

Postby Squeakycat » Mon Aug 26, 2013 8:26 pm

Cece wrote:http://multiple-sclerosis-research.blogspot.com/2013/08/clinic-speak-serious-adverse-events.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+blogspot%2FWvYVL+%28Multiple+Sclerosis+Research%29
While this study was done in EAE mice, it presents an alternative to steroids that might have longer term benefit as well as avoid some of the side effects of high dose steroids.

Relatively high dose calcitriol is available and has been in use for over 20 years in the treatment of people with kidney disease so the risks of it are well known and quite manageable and extremely mild compared with IV steroids. There are currently 178 clinical trials of the use of calcitriol in the treatment of a number of diseases, though none currently underway for MS.

If someone is facing steroid treatment and has a friendly neuro, it might be possible to test using calcitriol plus Vitamin D as an alternative to steroids.

I don't have access to the journal article, but it should be relatively easy to work human dosing from the information on the dosing they used in mice.
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Re: Just say no to steroids

Postby grandsons4 » Mon Aug 26, 2013 9:15 pm

Squeakycat, Hi: My son has an appointment with an LLMD in two weeks to discuss the pros and cons of being empirically treated for Lyme. I read the article you're refering to, thought "Wow" and, after help from jimmylegs as to what to research, decided to recommend to my son that he should consider supplementing with both cholecaliferol and calcitriol. Apparently, calcitriol is available only as a prescription. Do you know if this is correct? He's going to discuss this with his LLMD; calcitriol appears to be potent stuff. We only produce about 0.5 to 1 mcg per day, and 10,000 IU of D3 is 250 mcg.
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Re: Just say no to steroids

Postby Squeakycat » Mon Aug 26, 2013 11:02 pm

grandsons4 wrote:Squeakycat, Hi: My son has an appointment with an LLMD in two weeks to discuss the pros and cons of being empirically treated for Lyme. I read the article you're refering to, thought "Wow" and, after help from jimmylegs as to what to research, decided to recommend to my son that he should consider supplementing with both cholecaliferol and calcitriol. Apparently, calcitriol is available only as a prescription. Do you know if this is correct? He's going to discuss this with his LLMD; calcitriol appears to be potent stuff. We only produce about 0.5 to 1 mcg per day, and 10,000 IU of D3 is 250 mcg.

You may want to look at the work that Dr. Wheldon has done with Chlamydophila pneumoniae.. While Lyme's Disease is certainly a possibility, it appears that c. pneumoniae is yet another potential bacterial infection masquerading as MS.

As far as taking both calcitriol and VitD3, the study I posted was looking at this in the context of EAE in mice during a relapse, not as a general, prophylactic approach to EAE. There are, however, several other studies looking at mega dose calcitriol with calcium as a cure for EAE.

Calcitriol is a prescription drug.

While it is used to maintain calcium balances in people with chronic kidney disease and being investigated for use in acute disease such as active cancers, I am not aware of anyone studying (or using) it prophylatically for any condition, let alone MS.

Calcitriol is one of several forms of vitamin D maintained by the body. It is made from precursors, including cholecaliferol (Vitamin D3) and sunlight, in the kidneys and when needed and the precursors are available, in cells needing vitamin D.

While it is the bioactive form of Vitamin D, the level in the body is carefully regulated based on need. If you took it and your body didn't need it, it would be converted to a storage form of vitamin D or degraded. Think of this like sodium. If you take an amount in excess of the body's requirement, it is excreted. In the case of calcitriol, an excess is not generally excreted or broken down, but it is converted into another form to provide a reserve for times when there are inadequate levels.

With that in mind, I can see a rationale for using both calcitriol and vitamin D3 during a relapse to deal with the relapse, but I don't think you can make a case for using it prophylactically in the way you can argue that maintaining adequate levels of 25(OH)D3 through supplementation would be useful.

Hope that is clear. Until someone has done further research on this, calcitriol may be useful in treating relapses in lieu of standard steroid therapy, but otherwise, you are probably fine just maintaining "adequate" levels of vitamin D through either solar exposure or supplementary Vitamin D3.
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Re: Just say no to steroids

Postby grandsons4 » Thu Aug 29, 2013 12:49 pm

Sc, thanks. My thinking on calitriol concerns the research being done on the genetic component regarding MS and vitamin D metabolism. Suppose all is well and good up until the point were production of calcitriol commences. Would exogenously supplying calcitriol benefit someone who may have trouble producing their own? One of the reasons I've considered this is that D3 (the precursor, as you noted) was ineffective in the referenced research when administered alone. On Cpn, I have considered this as well. When my son confers with the LLMD he will ask on the feasibilty of a hybrid Lyme/Cpn treatment, which I have been informed is a possibility. Again, thanks.
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Re: Just say no to steroids

Postby Squeakycat » Thu Aug 29, 2013 3:32 pm

grandsons4 wrote:Sc, thanks. My thinking on calitriol concerns the research being done on the genetic component regarding MS and vitamin D metabolism. Suppose all is well and good up until the point were production of calcitriol commences. Would exogenously supplying calcitriol benefit someone who may have trouble producing their own? One of the reasons I've considered this is that D3 (the precursor, as you noted) was ineffective in the referenced research when administered alone.

Both Vitamin D3 alone and calcitriol alone were ineffective in this study. They only saw benefit when the two were used together.

I've been using calcitriol for over 12 years (for cats with chronic renal failure) and am not aware of any research showing that it is of benefit as an alternative to D3 because of genetic issues in the conversion of 25(OH)D3 to 1,25(OH)2D. There are many genes involved in the conversion and transportation as well as use of vitamin D beyond those that effect this conversion.
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Re: Just say no to steroids

Postby Squeakycat » Fri Sep 27, 2013 4:55 pm

More on this subject in the Vitamin D thread.
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