I am so freaking frustrated.
I'm a very skeptical person when it comes to complementary medicines.
I've heard horror stories of lupus patient with herbal remedies.
I've avoided them most of the time.
Heck, I even suspected Herbalife as partly responsible for my flare in 2006.
Again, I have to consider the fact that I was under a lot of work stress in 2006.
Over-worked in an incompetent environment!
Anyway, back to my title :- MSM (Methylsulfonylmethane) & Lupus.
Why is this unemployed Alice frustrated?
Well, a couple of days ago - I nicely posted on the local chapter of SLE Malaysia FB page wall regarding MSM (Methylsulfonylmethane).
It goes like this :-
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Anyone heard or used of MSM (Methylsulfonylmethane) ?
I am not a person into supplements but have read some convincing reviews about it. Also, it is listed under "supplements may also help" for SLE in University of Maryland Medical Center.
http://www.umm.edu/altmed/articles/systemic-lupus-000161.htm
(At this point of posting, I've done many internet searches relating to MSM)
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They then responded :-
Our doctor says that there is little study on humans to prove or disprove this. He has referred us to the info given at:
http://www.quackwatch.com/01QuackeryRelatedTopics/DSH/msm.html
The bottom line states that no published research studies link MSM to any of the health claims made by its marketers. Sulfur needed in human metabolism comes from dietary protein. MSM supplements probably make little or no contribution to the body's sulfur requirements. Thus there is no good reason to use MSM supplements.
(I did read about it in QUACKWATCH, but it was in 2001.)
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I then replied.
The quack watch was in 2001 (done by a Clinical Dietitian), before this study
http://www.ncbi.nlm.nih.gov/pubmed/16309928 ?
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The doctor then replied :-
Yes I did read about this study with regards to osteoarthritis. There has been no study with regards to SLE patients. It is a very small study and even the study suggested that more needs to be explored. The effects need to be replicated and consistent in larger trials to prove its effectiveness.
Although the trial shows promise it was done by individuals in the herbal world and the patients were obviously exploring the herbal practitioners making the study population biased. Having said this, if there is someone with the full paper, please send it to us for scrutiny.
The other thing is, since 2004 there were no more studies published in medical journals. Why? If it was so promising, then one would expect more papers looking into this.
(DUH? Then why quote the QUACKWATCH in the first place! And quoted "Individuals in the herbal world???" And study 'biased'? Why on earth would any lupus patient has full paper of the studies?? How would we know why there are no further papers / research)
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I, still trying to discuss further then posted that MSM was mentioned in the local newspaper :
http://thestar.com.my/health/story.asp?file=%2F2010%2F10%2F10%2Fhealth%2F7174109&sec=health where it was mentioned that Arthritis Foundation of America recommends using MSM, (I can't find the link though..)
I then posted :-
Thanks - I appreciate the feedback.
I am careful with what I take, even supplement.
I do not defend MSM as I'm not even taking it. Just an open discussion to see if there's anyone with experience
I know MSM is largely marketed overseas for joints issue, and I am looking at it as a supplement for my joint, not SLE.
My knees hurt when going up and down the stairs but x-ray shows nothing, thus no drug prescription.
And, also for my hair. :)
Operative word "supplement".
As mentioned above, I am equally surprised when I found MSM listed in the above website of University of Maryland Medical Center as "supplements may also help" for SLE.
I do not know why there were no human studies after 2004, but there are animal studies for osteo and liver sometime in 2008(?)
http://www.fasebj.org/cgi/content/meeting_abstract/22/1_MeetingAbstracts/1094.3?maxtoshow&HITS=10&hits=10&RESULTFORMAT&author1=Amiel&andorexactfulltext=and&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT
http://www.fasebj.org/cgi/content/meeting_abstract/22/1_MeetingAbstracts/445.8?sid=bcb1464c-dcc7-4676-9cb0-ced345ac44e8
Don't think these are "herbal people" doing research on mice (or rabbits).
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Then silence ...
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I then submitted a link of MSM - FDA GRAS ..
Also, in 2008 - FDA GRAS (Generally Recognised As Safe) -
http://www.fda.gov/Food/FoodIngredientsPackaging/GenerallyRecognizedasSafeGRAS/GRASListings/ucm153891.htm
Submission for GRAS -
http://www.accessdata.fda.gov/scripts/fcn/gras_notices/grn000229.pdf
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1/2 hour later they replied :-
If it is classified GRAS by FDA for mice & humans, hope it also means that SLE patients can tolerate it. Anyone wants to test it out? : )
(DUH! Mice and Human? I can sense their sarcasm at this point of time! Probably hoping I try it and drop dead!)
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Nevermind, End of Discussion, I said
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Wouldn't it be more professional not to quote the QUACKWATCH (which was last updated in 2001) and say something like :-
"MSM benefits has not been tested in context of SLE (Lupus), although there are limited studies to show that it may be beneficial towards joints / connective tissues. It will be good to discuss with your doctors and keep your blood works in check should you decide to take this supplement" - Dr. Alice-Wannabe!
To me, MSM is like Vitamin C.
To some, it makes a huge difference, to the other some, probably nothing.
However, to link it to "QUACKWATCH" is simply inappropriate, especially if it is outdated. Having not even considered that it was submitted for GRAS (2008) and listed in University of Maryland Medical Center as "supplement may help" for SLE. (You don't see many supplements being listed!!!).
From QUACKWATCH in 2001, to GRAS 2008, listed in UMMC, it must mean something?
I really need to get hold of
Dr. Stanley Jacob's book "The Miracle of MSM".
Not now though - I'm unemployed!
P:S: To all lupus friends who have tried MSM, whether working, worked or not, pls do feel free to leave comments!
