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Tuesday, February 22, 2011

Yay or Nay : MSM (Methylsulfonylmethane) & Lupus


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 :-

*****

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)

*****

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.)

*****

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 ?

*****

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)

*****

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).

*****

Then silence ...

*****

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

*****

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!)

*****

Nevermind, End of Discussion, I said

*****

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!

4 comments:

Amy and The House of Cats said...

Well, I don't have any experience as far as the MSM but reading that whole thing did frustrate me - I can see why it bugged you too. I guess that they just wanted to argue or something. Maybe they were having a bad day. Too bad no one who actually has tried it responded, because that seems like it would have been more helpful!

Old Kitty said...

How frustrating!! I hope you do get in touch with people with lupus who have tried this supplement. Good luck!!! At least you're doing the right thing by doing all your research first!!

I'm sorry to hear you're unemployed. I'm truly sorry! :-(

Please take care and big hugs to all your gorgeous kitties! xx

Au and Target said...

I look at stuff online and think "advertiser?" "competitor?" "someone with a double digit IQ?" There's some odd stuff out there!

And talking of testing out new drugs :-) Au is eating 3 times as much as he was on Monday. This FIV miracle drug he's testing seems to be working. We're over the moon!

lupie said...

Hiya all,

Don't worry about me being unemployed!

I'm in touch with another lupus and Myasthenia Gravis, who has tried MSM and worked for her. I found her in a thread she started about MSM in 2008, trying to share her experience but was bombarded with hostility - sigh! Anyway, it is now 2011 and she is still an active member just don't talk about MSM anymore (who would after all those negativity by people who hasn't even tried it!)

I agree there are many "odd" claims out there but do go to the main webpage, google DMSO, it will take you to the page of the founder - Dr. Stanley Jacobs, MD, not those weird people who carries the title of Dr. (like what we see in many of the local MLM products here! heheehe)

I found out about MSM a week ago via my husband who started taking it. Guess what? It worked the very next day! (Hubby has been in pains (joints, muscles, headache) for years and no medicines worked, many tests came back normal!) I was skeptical and concerned (thought it could be some form of 'banned' substance) and I started to 'research', ahem.

Then, I thought how about ME, with lupus, will it work for joints relief? (and hair too, I'm vain!)

Also, for my cats! (yes, MSM is known to work for pets too! especially horses (been in used for many years!)

Okay enuff about me!

Woo Hoo, I am so pleased that Au is eating!! How long will he need to be on this FIV miracle drug?

I'm struggling with sick strays in my area. I'm not sure what's going on! Another one appeared sick yesterday. She looks disorientated.
I've caged her, monitoring closely.

Momo is sick too.

Sigh...