This Is MS Multiple Sclerosis Knowledge & Support Community

Many good arguments have been made here.

It sounds wishy washy but I have to agree with a lot of it. I also have to say that apple/apple comparisons haven't always been involved in the cited studies and the MS phases they represent.

The rebooting with stem cell studies involved late stage, which seems to be a different animal entirely from RRMS. Additionally, when used in the "rebooting" process, replacing stem cells seems to have shown unecessary and likely reduce the odds of success.

I probably shouldn't even mention it because it's wild speculation which I can't substantiate but it's always nagged at me that there has never been an explanation for the cycling of the relapsing remitting phase. Yet by all accounts there seem to be "dormant" viruses/bacti in the cns.

In other parts of the body, wars between bacti/viruses and the immune system also show this vaccilating effect as each side falls back, increases their numbers and attacks again. A really simple, obviously too simple, explanation for relapsing/remitting might involve the above this cycling power stuggle, in addition to and exagerated by the lag caused by the immune system having to replentish it's numbers through the bottleneck caused by having to enter through the bbb. In other words the viruses/bacti have more chance to get out of hand than in other situations and require a more drastic than normal response by the immune system. Obviously in a place where a drastic response is not favorable.

Faults with that theory? I'm sure there are plenty but the obvious one is that I'm not aware of any research which has shown any evidence of any aspect of this. Additionally, because of the harder access through the bbb which would allow the viruses/bacti to get a head start on the immune system it seems that somewhere in history the immune system would have lost a battle or two and that some researcher would have noticed the high number of viruses/bacti during autopsy.

Now, none of that is autoimmune and perhaps none of that is sustainable but I can't get it out of my head that is something like how the process has to start.

The point I'm trying to make is that I am not dyed in the wool "autoimmune".

Bob

HarryZ,

My concern, however, is using them on MS patients because so little is known about the side effects and possible severe results.

You needn't be so concerned as there are people like me who are are quite happy to use them and sign the necessary consent forms.

My interest was in reducing the disabling relapses that I had experienced - it's not a great feeling seeing your young kids watch you crawling to the bathroom or having to pass you the arm cruches to go out in the garden. My Campath treatment at the end of November has had very good effects - no relapses and the reversing of the reversible disability. Last week the whole family went for a long walk along the sea front. This made the risks of having the treatment well worthwhile (as does the excellent monitoring / follow-up I am having).

In 3 or 5 years time I might report that the underlying disease has progressed anyway, but the value of the near-normal years will have been priceless (to me and my family).

I think that is the problem in looking at the pros and cons of any treatment. Those who will never have to take it can always see the risks / bad side. Those with the disease grab on to the positives. How much the companies make from the drug really isn't a concern to me - if it gives me "normality" for a few years it was worth it.

A problem with these sorts of threads is that the "researchers are useless / drugs companies are greedy" brigade can put forward a case against all the current licenced treatments / treatments in trial (interferons / mono-clonal antibodies etc). But where does it leave us with the disease? No treatments!

As for Dr Behan - it's easy for him to say that the research has been abysmal - what else does he offer? How has he pushed forward MS research?

MS research (as for pretty much all reasearch into brain disorders) has been slow because it is an incredibly complex (multi-faceted) disease. But the researchers are making some in-roads. I'm grateful that I have been given an opportunity to receive an experimental treatment. Yes, I could wait until it is licenced and when all the risks have been identified. But this means time, and time and MS tends to mean more disability / death (my "evidence" here is the unfortunate cases of Richard Pryor and Jacqueline du Pre). Do nothing or do something risky? Those of us with the disease are caught between a rock and a hard place.


Ian

I'll take that when it comes. I'll also take the treatments that reverse "reverseable" disability.

Sounds just like what i was thinking when i took interferon but it sounds like campath is much better, with all the research and advances in medicine it should be. what do they say the greater the risk the greater the reward good luck Forest, like u said any normal time u get is worth it..

Hello Ian,

I absolutly agree, that getting back normal life time is most important, it doesnt matter too much, what it takes to achive it.
I happy to read Campath works so good for you !

I dont think anyone, what ever theory he follows, has the opinion that research is waste of time and should be cut back.

But indeed it would be nice to see researchers cover a wider range of possible approaches (metabolism, abx, virus etc.) and thats what I think most complains are about.
Current research is (just a guess) 95% toward autoimmunity and in my eyes that extend is not justified. Neither by current results nor by its rational.

--Frank

Ian,

A problem with these sorts of threads is that the "researchers are useless / drugs companies are greedy" brigade can put forward a case against all the current licenced treatments / treatments in trial (interferons / mono-clonal antibodies etc). But where does it leave us with the disease? No treatments!

I don't think anyone here is saying that. There are excellent researchers and those that aren't as good....same with drug companies. I think what most are stating is that with MS, there are many different ideas and thoughts as to the cause and nature of the disease but to this day, nothing has been proved. Up until a few years ago, the vast majority of MS research has been funded and thus controlled by the big drug companies. We know the results so far and they are far from encouraging.

This leaves many MS patients in the situation like you found yourself....try something on the experimental level, use what drugs have been approved or decide to take nothing. The choice is governed by many variables. You decided to try Campath and so far so good. My wife decided to go into a trial about 10 years ago involving a drug (referred to at the time as TNF) that stopped and reversed MS in the mouse. The drug killed one of the participants and thus ended the trial...Marg will likely never get involved in another trial of that nature.

I think this thread has been very interesting with many different thoughts and opinions....and no real answers....sounds like MS!!!

Harry

Harry,

I think most of us are in agreement - just coming at it from different angles / perspectives.

It's alarming to read that MS is increasing in Canada and Europe (in women) and that the increase cannot be just because of better / earlier diagnosis. Attached is an article about another disease (diabetes) which is on the rise. Again, there seems to be an environmental agent at play - another article I read on this story suggested a virus as the trigger / cause which perhaps people are exposed to at a different age.

http://news.bbc.co.uk/1/hi/health/6455653.stm

When the researchers get a better handle on the environmental agent that seems to be involved in these types of disease it will be a major breakthrough. Until then, limiting the on-going damage / protecting the CNS / encouraging repair may be our best bet until the cause is identified. Once the cause is identified then it should be possible to think about prevention.

As you can see, another effect of Campath is that I am now very polite to slightly annoying middle-age Canadian men. Brock is next on my list for chocolates, but I'd be happy to forward you a box if you PM me with your address.

Ian

bromley wrote:It's alarming to read that MS is increasing in Canada and Europe (in women) and that the increase cannot be just because of better / earlier diagnosis. Attached is an article about another disease (diabetes) which is on the rise. Again, there seems to be an environmental agent at play - another article I read on this story suggested a virus as the trigger / cause which perhaps people are exposed to at a different age.

Thank you for changing the subject Ian and I'm glad that you have opened up the topic of my little pets. As a sensible person that is where you were going with this isn't it......the new and improved Hygiene Hypothesis?

Another possibility is that children are being exposed to fewer germs, affecting the development of their immune systems.

Yup, just read it.... For a Limey you're A-OK Ian!
Bob

we are in two different places with ms maybe when u get to where i am i won't be so annoying to u..but u won't get there right!! i will say it again good luck to u. to me your not a hero your just someone who is grasping at straws..

Lyon said,

A really simple, obviously too simple, explanation for relapsing/remitting might involve...

and I suggest...a faulty pancreas "on the fritz" (off and on)???

And SPMS when it goes berzerk all the time.

Hi Lynda,
I'm not that familiar with the pancreas. Has the pancreas shown a tendency to cycle in function?

Maybe I'm missing something obvious but I'm not sure why the pancreas would fit the relapsing/remitting situation?

Bob

Lyon, because I am the "insulin girl," remember?

The beta cells in the pancreas produce the body's insulin. But I think they can malfunction (due to bacteria, viruses, diet, genetics or...phases of the moon)and produce too much. Insulin bathes every cell in the body, but I think an excess of this irritant causes the initial damage in MS (which then summons the immune system to "mop up").

I still can't get my insulin level down.

robbie wrote: we are in two different places with ms maybe when u get to where i am i won't be so annoying to u..but u won't get there right!! i will say it again good luck to u. to me your not a hero your just someone who is grasping at straws..

Hi robbie,
And for a short time you seemed to be controlling your negativity so well.

The burden of MS isn't one that anyone should have to face. The treatment decisions that people with MS have to make, no one should have to make.

Contrary to fairness, MS does exist. The treatment options suck and good people who shouldn't, find themselves having to make those decisions.

Also unfair is the fact that in the end people with MS have to take responsibility for and live with those decisisions for the rest of their lives.

I can't say what went through Ian's mind when he signed up for Campath treatment. I'm not going to say that Ian is so noble that he was more concerned about promoting knowledge and playing a part in refining future treatments. I'd almost bet that he was more concerned about his personal well being.

Despite that, he knew that to have any hope of benefit there were risks which he had to accept. Obviously he accepted the risk and went through with the treatment and seems to be reaping the benefits.

Not everyone has Ian's courage and conviction, and that's fine. That doesn't make the others any less nor make more of Ian.

"grasping at straws" brings the mental picture of a drowning rat trying desperately to save himself. For some reason I can't align that with the image of him walking along the beach in Spain holding hands with his wife and kids.

I don't think that Ian deserves to be considered a hero nor deserves to be maligned for his choices.

What's the old saying? "No guts, no glory?" Never mind, that's something they say about heros.
Bob

lyndacarol wrote:Lyon, because I am the "insulin girl," remember?

Ha! Despite my poor memory, I did remember that.

I can't say one way or the other. Lord knows my theory wasn't that great. I suppose if the pancreas was known to or could prove to be cyclic in production??

I'm too old to hop on any bandwagons but I like to consider the options so thank you Lynda!

Bob

Ian,

As you can see, another effect of Campath is that I am now very polite to slightly annoying middle-age Canadian men. Brock is next on my list for chocolates, but I'd be happy to forward you a box if you PM me with your address.

Ian

I'll tell you what....keep the chocolates and I'll send you a "top up" of Campath....if this is a side effect I want to ensure you have enough

Harry

Ian,
thank you for your input. I don't quite agree with you in everything you wrote, but since I have already stated my opinions several times in this thread, I'll let it be for now. Instead, I'd like to comment few parts of your posts:

bromley wrote:... the first therapies for MS have not been as effective as hoped - in terms of stopping / radically slowing down the progression of the disease.

That was nicely put. On the other hand, this is what the reliable and unbiased Cochrane group had to say about the results of double blinded drug trials done with interferons:

• "MS may be related to the immune system. Interferons have several effects on the immune system, and act against viruses. The review of trials found that interferons can lead to a moderate reduction in recurrences and disability in people who have MS with remissions."

And Cochrane Report on Copaxone:

• "Available data do not support a beneficial effect of Glatiramer acetate in preventing both disease progression, measured as a sustained worsening in disability, and clinical relapses."

bromley wrote:And with PML, a more vicious demyelinating disease, the JC virus (dormant in the majority of people) is reactivated and the reason for the devastating damage. I don't think PML is described as auto-immune, but it is clear that the immune system does the damage in its efforts to control / clear the virus.

I suppose that's not the way it goes. Actually, JC virus can cause PML only when the immune system is suppressed or isn't working well enough in the first place. That is why PML occures more often among AIDS-patients, and that is why it was found in those few unfortunate MS patients in Tysabri trials.

bromley wrote:Campath is very effective at whacking the T cells and B cells, thereby dramatically reducing relapses and allowing the body to repair "reversible" damage, but may also promote some repair

You're right, in the phase II trial Campath was able to reduce relapses by 75% when compared to Rebif. It was a good result, but I wouldn't call it "dramatic". The trial lasted only two years, and thus no conclusions can be made about the ability of Campath to halt the proggression of permanent disability.

bromley wrote:It is the B cells that are dramatically reduced by Rituxan. This is one of the few drugs that is being trialled for PP MS - where inflammation plays much less of a role (compared with RR).

Rituxan is also one of the drugs that might increase the risk of PML. I agree with Harry, using monoclonal antibodies may always have its risks. Is it worth it? Maybe one day we'll know it for sure.

bromley wrote:Do nothing or do something risky? Those of us with the disease are caught between a rock and a hard place.

Now you're talking! By learning more about ones background and way of thinking it is often easier to understand ones actions and comments.

Maybe instead of "autoimmune" and "no autoimmune" camps, people on this board could be divided into "hope" and "scepticism" camps. I'd say you're obviously in the "hope camp". You're also ready to attack against those who don't share your way of seeing things on a personal level. I personally don't always accept it, but after reading your posts in this thread I can understand it better.

I definitely belong to the "scepticism camp". All current medications are used, and most of those in the pipeline are studied in trials here in Finland, but I wouldn't try any of them. I just don't trust the logic behind them. The only drug I'd be willing to try is minocycline, but it is not available here at all. If I had known then what I know now (partly by following this board), I would have had my hormone and insulin levels checked right after I was diagnosed, too.

Anyway, this has been a good thread. I think Harry summarized it well in one of his posts:

HarryZ wrote:I think this thread has been very interesting with many different thoughts and opinions....and no real answers....sounds like MS!!!

Be well.

-finn