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DMD questions

I'm still undecided whether i will bother with these drugs.  Just having read Quix's comments that her neuro dislikes Copaxane makes me increasingly skeptical.....

1: How long have these drugs been around?

2: do 'they" know the long term effects of these drugs? By that I mean, do they have long term NEGATIVE side effects?

3: are there any stats showing the % of people who really benefit?  Ditto stats showing a lack of benefit?

Cheers
13 Responses
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695915 tn?1228665952
I have been listening to George Jelinek talk on DMD's in his recent interview;
Hey Nigel. Just a quick note to say that if you missed the live interview with Prof. George Jelinek, I've just published an excerpt from it on my blog. The excerpt discusses the flaws in the scientific studies of the interferon drugs. It's a very clear and accessible description of the situation and quite illuminating.... You can check it out here: http://www.theselfhealingcoach.com/2010/09/05/karen-gordon-interviews-prof-george-jelinek/ Warmly,KarenThe Self-Healing Coach
Helpful - 0
649926 tn?1297657780

I like the way Lulu says her 2 cents - that's cute!

My 2 cents is simple. Try a DMD and see how it goes. You can decide to quit at any time and no one can stop you cause you are the boss of you.

You can't however turn back the clock down the road if you start wishing that you had tried some form of DMD sooner.

Good luck with whatever you decide - we're here for you!

Hugs,
Erin :)
Helpful - 0
1045086 tn?1332126422
My experience is similar to Shell's.  I had MS for at least 20 years before diagnosis.  I was lucky that relapses never got too bad or left me with severe disabilities but I did make many a lifestyle adjustment to symptoms along the way.  I had doubts about the drugs but didn't feel confident relying on luck to carry me far into the future.  In the end, I figured I couldn't say the DMDs weren't  for me unless I gave at least one of them an honest try.  They do take a little getting used to but when this is my only shot in h*** to delay symptoms and avoid relapses - I signed up pretty quick.

Haven't you just been having problems with a relapse?  Has it crossed your mind at all that you might have delayed or lessened it's effect had you already been taking a DMD?  Have you considered how many extra riding days a DMD might offer you?  One of my lifestyle adjustments was admitting I no longer had the balance or reflex control to safely ride my horse.  I sold her last year just months before my official diagnosis was made.

No pressure.  I apologize if I came on too strong.  You will find the right answer for you.  Please just be sure you base it on facts and not assumptions or rumors.

Mary
Helpful - 0
572651 tn?1530999357
my additional two cents - I've been on copaxone almost two years, and have minimal side effects.  I get a small injection site lump that goes away in 3-4 days.  I have no rash and no pits in my skin.  

My point is each of us react differently and you won't know until you try.

-L
Helpful - 0
338416 tn?1420045702
The welting and itching with Copaxone is hard to get over.  Some areas are back to their pre-Copaxone sensitivity, so they're itching like a SOB!  But eventually the skin gets used to the injection, and it doesn't welt up as much - or at all.  What I have to watch out for now is not to leave the cold pack on too long, because it'll freeze the skin.  (Numbness again!)

I know that they're researching blood types and MS - it looks like certain blood types have the flu-like reaction with Betaseron, and its derivatives (Avonex, right?) while other blood types don't have a problem with it.  It also looks as if those that get the flu-like reaction don't get any benefit from the drug, but I think they're still testing that idea.
Helpful - 0
198419 tn?1360242356
Hi Jemm,

It's so much easier to make a decision to not go on meds when you haven't started them. I say this because I too thought why bother, the percentages didn't thrill me, nor did the side affects I read about.  

However, in the end, I took a lot of what Doc Q cites about the DMDs and what HVAC says about past MSers and thought about what I 'could' be doing to myself by not taking them. And, if I waited yrs and yrs it may be too late for them to work for me.

So I looked at it as "I'll try." This thought has kept my head on straight about it all.  I still indulge in thoughts of injectionless days. But those days may come for me yet. You just never know.

As far as Drs preferences go, I tend to think in addition to those Docs who are researchers of the DMDs that also many of them use their patients experiences to steer their opinions. For example at a recent lecture I attended the Dr. preferred Rebif. He said it was his patients experience that they had far less side affects than Avonex. So, while they are so very similiar his patients tolerated it better Avonex. He does have patients on the variety of DMDs too though including Tysabri.

So, for what it's worth, I'm sharing this with you and hope it helps you with choices. This is not an easy decision by any means and we can totally relate.

ttys,
Shell
Helpful - 0
667078 tn?1316000935
I know a lot of people who had MS long before the DMDs came out and to the person they said they would give anything if they had had a chance to take anything that would slow the progression. The trick is MS damage takes place even with out symptoms.

My Neurologist says all of them are equally affective and safe it is just about what works for you.

I took Copaxone for a year until I found out I do have a type of MS the DMDs do not work for and my insurance will not pay for them. In my case I really have no choices and it feels like  I am going down hill with no brakes.

I am riding now because with PPMS you usually lose your legs and I am not waiting for that day. I am having no regrets.
Helpful - 0
147426 tn?1317265632
Hi, folks, I forgot to ask my neuro why he didn't like C and will not see him until the end of the year.  It's just his opinion.  I should note that he has been an Avonex researcher for many years.

We have data on Copaxone and Betaseron now dating back 20 years.  Avonex and Rebif are only 4 or 5 years younger.  So I would say that we have a great feel for any long term side effects - and, other than potentially emptying your pockets - the long term effects are very few and nothing you haven't heard discussed. serious.

The data show that about 40% to 45% of people taking any of the DMDs will have a beneficial result of fewer relapses and slowed disability.  The problem is that they have not found the markers which will tell us which of us are best candidates for them.  I have a suspicion that it will be something along the lines of the amount of inflammation that we mount against the disease.  Since they measure the outcome in terms of relapses and lesions, if you have very few relapses and very few lesions, possibly you are not a great candidate.  These are MY thoughts only and I derived them from my discussions with my neuro.

Since we have no predictors, the only reasonable route is to recommend the drugs for everyone, hoping to catch the greatest number in the group that responds and that slows down.

It appears to me that the oral meds will have more significant side effects.  I haven't been really looking at them until the testing is complete and they are approved.  Even then, like with Tysabri, we may have rude surprises after the are FDA-approved and in wider use.

I have NEVER meant to dissuade anyone from using them.  I chose to take Avonex and, only when I stopped because of the Medicare Donut Hole problem, did I realize how much more depressed I had been on it.  I suddenly had less morbid thoughts, like wondering how long I would let myself live until I ended it all.  These thoughts worried the bejeebers out of my neuros and they stopped the interferon and won't give it back to me.

As for Copaxone, I am one of those people whose skin seem s to react to everything with great welts and sustained itching.  I was really reluctant to try it.  That, then was coupled by Dr. C's bias against Copaxone.  So I sit without meds.

Jemm - I would recommend that you take the only option that has a chance of slowing this disease.  I would recommend that to all my friends and certainly my family in the same position.  Really, REALLY.

Quix
Helpful - 0
572651 tn?1530999357
there is a lot of information out there about these treatments - a little bit of time researching may help you to understand what they offer.  be well, Lu
Helpful - 0
Avatar universal
ok, thanks, interesting stuff.......I'm finding it a tough decision, but I was always hopeless at making decisions...
Helpful - 0
572651 tn?1530999357
I should have also pointed out that the interferons have been around even longer and have the same positive effect that copaxone has shown.  
Helpful - 0
572651 tn?1530999357
JemmAus,

I'm with Jensequitur  - still waiting to hear from Q on her return visit to the neuro why he doesn't like copaxone.  She is going to ask the next time she is in. I'm thinking I have heard some express that copax is not as potent as the interferons.

My neuro describes the difference between the interferons (betaseron, rebif and avonex) and glatiramer acetate( copaxone) as similar to a pepsi/coke challenge.  they are all the same, it just depends on personal preference as to which one you like better.

Is your doctor offering you copaxoneThe side effects we know from copaxone, after 18 years of use, is the lipotrophy.  Period.  There are no liver problems.  No difficulty with drug induced depression.  You do have to inject daily.  

There was a study released this spring about the 18 year study of copaxone users - it has remarkable success.  80% of copaxone users after 18 years were still walking without assistance - no walker, or wheelchair. To me that is enough reason to do that daily shot.

If you were diabetic, would you be willing to take a daily njection of insulin?  Well we aren't diabetic but we have an equally insidious disease and taking that regular shot is what we can do to keep the MonSter at bay.

The DMD's do NOT cure the MS.  what they do offer is to possibly slow the progression - and sometimes for some people that slowing is an absolutely creeping of the disease.  

to me, the DMD's are our best chance at controlling the beast ---- But  I know not everyone feels that way and would rather take the chance that their MS is not going to get worse.  That is a gamble I am not willing to take.

There are no guarantees in this life, but taking these drugs is sure better than sitting back and doing nothing.

good luck with this decision -
Lulu

Helpful - 0
338416 tn?1420045702
I'd like to hear the reasons why her neuro dislikes Copaxone.  I keep hearing good things about Copaxone - that it reduces disability, and it's better over the long term.

Here's a good resource - reasonably impartial.

http://en.wikipedia.org/wiki/Glatiramer_acetate

I just got back on it.  Mainly the only things I don't like about Copaxone is the lipoatrophy.  I have several weird looking dents on my body where I've injected, and aside from a little weight loss around the area, they haven't changed in appearance.
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