This Is MS Multiple Sclerosis Community: Knowledge & Support

Since Gary has been dxed with Devic's, MS's evil twin, I have been able to step back and question MS therapies. With Devics, the standard treatment is IV steroids or IV chemo type drugs during an attack and then keeping you on a daily immune supressing dose of a selection of suppressive drugs. AZT is given lots as well as methotrexate. Cellcept, what Gary takes, is newly being considered. Devic's is an autoimmune disease as is MS, so they say. The CRABs are kind of considered immune supressing therapy but are they?
My question is, why do they not do a more immunosupressive approach to MS on a regular basis? I know that methotrexate, Cellcept, AZT, etc are tough on your system, but what does the MS do to your body? What if supressing the immune system could keep you from having as many attacks? I know that some of this is in research, but why not more? I am just confused on this and hate like heck watching my dear friends with MS deterioate taking a stupid CRAB and getting a "nothing else we can do for you" from the DRs that call themselves "MS Specialist"

JMO--I have said this many times--as have many of you--the CRAB drugs completely and totally not only monopolize the MS market--they control it. And they will continue to do so as long as they have the power and the money to do so. Some new drug comes along that shows promise...can they get NIH funding? No. Is this drug immediately "swooped" up by one of the CRAB companies? Yes.

Tovaxin is apparently trying to fight that; however, not so long ago the Tovaxin trial was changed from just Tovaxin to Avonex and Tovaxin and then back again to just Tovaxin.

I hate to be so cynical but would feel utterly ignorant were I to buy into the research/MS specialists rhetoric. Again--JMO.

Will this not put an end to crabs?

DRs are still hung up on the CRABs. All the Neuros in our area, 200 mile radius, THAT I KNOW OF, push the CRABs. Some are not even offering the idea of other therapies when the CRABs don't work. I know of one person who found LDN on the internet. They read up on it and was willing to try it. They had to take it to their DR to be considered. My question is, why has this DR not offered the other therapies before. I know that all therapies don't work for all people and there are some that NO therapies will work for. But there is something out there for EVERYONE to try rather than staying on CRAB therapy trying to get better. A young guy I know was recently offered Tysabri. His disability is light, but becoming more bothersome. He was on Avonex. I told him to go for it. JMO, Avonex has done him little or no good. And the hell he had to go through taking it.

This looks a little funny, i mean the drugs not the bugs..

Amelia,

I think you're right that the CRABs totally dominate the current treatment scene for MS, but there are some immunosuppressants used in MS today.

Cyclophosphamide (cytoxan) has been used for over 30 years to treat MS and there are still trials going on, it has never been formally approved for MS. In particular there is a trial going on now using a very high dosage (Lyon has mentioned this one I think).

Methotrexate is also used and there is a trial going on of injecting it directly into the spinal fluid (intrathecal). I think there is a particular neurologist who is pushing this one who claims to get great results, but others who have tried have had more mixed results.

Azathioprine has also been used for MS for a while and there is currently a trial going on (or just finished?) of azathioprine and steroids and avonex.

Cellcept is also used and is in a phase III trial with avonex right now.

The only strong immunosuppressant already approved for MS is Novantrone, which I believe is really effective for some people with aggressive RRMS.

There are other immunosuppressive drugs in the pipeline too like rituxan and campath that look really promising (don't get Bromley started talking about campath unless you have a few hours to spare).

I think one of the big reasons these drugs aren't more readily prescribed for MS is that they mostly have significant potential side-effects. But my understanding was that a neuro would probably be quite willing to prescribe their favorite immunosuppressive drug if a patient had failed on the CRABs and was progressing.

So in summary, there is hope!

Hope. It's what I live on. I do agree that these therapies are given for MS. But for whatever reason, they seem to be given in a "Last ditch" effort. Why wait until someone can't see anymore, or can't walk anymore. And I do believe that many DR are still holding out hope in the CRABs. I am on the bandwagon that feels the CRABs just aren't working. I believe they do reduce your lesions, but if that is not where your disability is coming from, what good is it. I'm disgusted that the FIRST thing Drs will ask to put you on is the CRABs. Just venting, I guess.

what about what i said..

I'm just thinking out loud:.......
But if the supression puts Devic's in remission........... then why isn't it more widely USED in MS? Every case will be different. Not all people with Devic's go into remission.

00

00

My Dr was insistant that I take Imuran. I tried it and was so ill I wanted to die. He took me off it, waited a bit, told me to try it again, same thing happened. I think Imuran is an immunosuppressant? When I was reading up on it I found it's primary indication was for transplant receipents to ward off rejection. I don't know a lot about this stuff, but I do know I NEVER, EVER want to be that ill again!!!!! I felt like I was just sure because I couldn't make myself shove that pill down my throat (knowing how I would spend the next 12 hours) my MS was just going to run amuck. I felt/still feel guilty I couldn't/can't take it. I about passed out on my way to work, threw up in the trash can (restroom was occupied), and it was all I could do just to sit at my desk I was so weak. I had to make a choice, I can only hope it wasn't the wrong one. I have to live. Like I said, I don't know a lot about all this medicine stuff and it scares me. Peace, V

Vidalia--in my opinion you did the right thing. You must listen to your body first of all.

A friend of mine who had a diagnosis of myasthenia gravis (MG), another autoimmune disease, took Imuran and died of liver and colon cancer 6 years ago.

In reading The Autoimmune Connection by Rita Baron-Faust and Jill Buyon, M.D., I found cautions against a possible azathioprine-cancer link 4 times!

Yes it is an immunosuppressant. But many that take it get very ill. That is why Gary decided to stay away from it, although it is the "standard" for Devic's. Cellcept, so far, has been good for him. With everything, I think you just have to find the medicine that works for you.

Hi Amelia

Your concerns are well founded. I profess that daily immunosuppression is possible with safe, effective and very affordable means. Simply put, maintenance of sufficient internal vitamin D3 will enable one to significantly reduce inflammatory autoimmune reactions from occurring.

The paper entitled Vitamin D Supplementation in the Fight Against Multiple Sclerosis discusses why vitamin D is so intrinsic to MS (and other AI conditions). Below is a list of specific mechanisms that the vitamin D hormone induces to produce immunosuppression.

1) Suppresses antibody production by B cells and the proliferation of T cells in the thymus.
2) Upregulates cytokines TGF-beta and IL-4. These proteins, which are produced by immune cells, act as suppressants of inflammatory T cells.
3) Inhibits production of pro-inflammatory cytokines such as IL-1, IL-2, TNF
and IFN gamma which also reduces inflamammatory reactions.
4) Interferes with T helper function and inhibits the passive transfer of cellular immunity by Th in vivo.
5) Inhibits the production of NO (nitric oxide) by immune cells. NO has been identified as one of the most destructive products of the immune system and is an important factor in demyelination.
6) Inhibits the proliferation of activated and memory T cells. Such cells are the main mediators of the inflammatory autoimmune reactions of MS.
7) Exerts immunomodulating effects in the CNS by inducing a profound
downregulation of antigen expression by both infiltrating and resident antigen-presenting cells (e.g. macrophages).
8 ) Inhibits the actions of antigen presenting dendritic cells.

Most of the article is not nearly as technical as these points suggest so please have a read of it. While you are at it check out this article which demonstrates well effective immunosuppression, a la vitamin D, in action.

Cheers
Nick


DIRECT-MS material

Booklets

Direct-MS produces information booklets on various aspects of multiple sclerosis. These booklets are listed below and a PDF of each one can be opened and downloaded by clicking on the title.

Alternately we can mail you a hard copy of any of the booklets. Just write or email us and let us know which ones you would like sent to you. Don’t forget to include your mailing address. There is no charge for this service.

Booklet #1 [I]Take Control of Multiple Sclerosis This booklet discusses the main causal factors of MS and, with this information as a guide, it lays out our recommendations for nutritional strategies to help control MS.

Booklet #2 Protect Your Family from Multiple Sclerosis
This booklet emphasizes the high risk for contracting MS of first-degree relatives of persons with MS. It discusses the causal factors of MS with special emphasis on vitamin D deficiency as a primary cause. Finally it demonstrates that adequate vitamin D can likely prevent MS in most cases and provides a recommended supplementation regime.

Booklet # 3 Multiple Sclerosis: The Alberta Disadvantage
This booklet demonstrates that the province of Alberta, the home of DIRECT-MS, has by far the highest rates of MS in the world: Prevalence 340/1000,000; Incidence 20/100,000.
Data and arguments are provided to support the argument that the main reason for the “MS Epidemic” is that all the main causal factors are present in Alberta, with low vitamin D supply being especially problematic.

Presentations

We have found that a Voiced PowerPoint presentation (‘Webcast’) is an effective way to communicate the science and the recommendations for nutritional strategies for controlling MS and preventing it in the first place.

The latest presentation is Prospects for Vitamin D Nutrition. The discussion is narrated by Reinhold Vieth of the departments of Pathology and Laboratory Medicine, Mount Sinai Hospital and Laboratory Medicine and Pathobiology, University of Toronto.

Dr. Vieth addresses the topics of:
Vitamin D and Human Evolution
Clinical relevance of higher vitamin D intakes
Toxicology of Vitamin D

The second webcast is entitled Preventing Multiple Sclerosis and is the second in a series of web casts regarding nutrition and Multiple Sclerosis. The focus of the Prevention presentation is how MS can be easily, safely and inexpensively prevented by focusing on protective factors. This is a must see for those people with MS who have children.

Our first webcast, Nutritional Strategies for Controlling Multiple Sclerosis, addresses similar issues. It presents the probable causes of MS and how to effectively control those elements. A review of the protective factors and how to incorporate them into your lifestyle is also covered.

[/SIZE][/FONT][/I]