Why should I take DMDs? Not being rhetorical (x-post MSWorld

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thisiswater
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Why should I take DMDs? Not being rhetorical (x-post MSWorld

Post by thisiswater »

I realize this could be on the drugs board, but my question is more general, not specific to one medication.

I had optic neuritis 7 years ago. I was not diagnosed at that time, was not tested, the ON resolved and I didn't think about it. With a couple of *minor* exceptions (numb foot), I have been asymptomatic ever since. A couple of months ago I went to the ER with a very bad exertion headache and the MRI/CT scans showed new lesions. My LP was positive for oligoclonal bands.

My neurologist has offered me Copaxone, but he sincerely understands my taking it or not. My question to all of you -- who are more experienced than I am -- is what are the arguments for and against taking it? I'm 58 and remain asymptomatic.

Many thanks in advance!
ElliotB
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Re: Why should I take DMDs? Not being rhetorical (x-post MSW

Post by ElliotB »

MS is an unforgiving illness and needs to be attacked in every possible way IMHO.

DMDs may help. There is no conclusive evidence. Less relapses is the reason to take a DMD. Keep in mind that even 1 less is a good thing.

FWIW, I take Copaxone (have been on it for almost 3 years) and would not take any of the other DMDs.
thisiswater
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Re: Why should I take DMDs? Not being rhetorical (x-post MSW

Post by thisiswater »

Thank you ElliotB -- I'm definitely thinking about the preventative possibility of taking Copaxone. Why is it the only drug you will take and how do you manage injection site issues? Thanks again!
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Re: Why should I take DMDs? Not being rhetorical (x-post MSW

Post by ElliotB »

At the time of my diagnosis, my neuro recomended Copaxone. I was skeptical (like you) and postponed treatment with it about a month until I had time to research DMDs. I found that Copaxone seemed to be safe over the long term and had virtually no side effects other than injection site reactions. Copaxone has been around for a long, long time and aside from complaints of injection site issues, has an excellent track record.

The keys to success with Copaxone for me...

It took me about 6 months of trial and error but I optimized the injection depth using the Autoject for each injection location at each injection site. This is important if you don't have a lot of fat on your body... there is a very thin area below the skin and above the muscle, and that is where you want your depth set at for optimal comfort. Too deep and you hit muscle (painful), too shallow and you get a lump.

I also heat for 5 minutes prior to injecting and ice for 5 minutes. Although the recommended time is only 1 minute each, I found it wasn't long enough for maximum comfort and do a lot better with 5 minutes for each.

It is also recommended not to massage the injection area after injecting which I never do, but I always exercise after injecting so I kind of get an 'internal' massage. In any case, I don't have injection site reactions and experience virtually no discomfort.

I seem to be doing very well on Copaxone and am quite pleased with it. I have had only one relapse in 3 years and that started about 2 years ago.

I am very proactive with diet, exercise and supplements. I am doing everything possible to make the best of a bad situation.
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Re: Why should I take DMDs? Not being rhetorical (x-post MSW

Post by 1eye »

My opinion? Don't take anything if you are asymptomatic. Eat well and get a lot of very thorough exercise. Don't treat nothing. This stuff may prevent attacks, but why assume you will have any? Don't eat trash. Lots of fresh fruits and vegetables. Take DMDs when you start to be symptomatic, if that ever even happens.

I think you have a better chance of avoiding future attacks if you eat well and exercise well.

JMHO I am not a doctor. My medical advice is worth what you paid for it.
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Re: Why should I take DMDs? Not being rhetorical (x-post MSW

Post by ElliotB »

"Take DMDs when you start to be symptomatic"

Sorry, I respectfully disagree. The whole idea behind taking a DMD is to prevent attacks. DMDs do not necessarily affect disease progression. Taking DMDs after you start having attacks may be too late! They don't 'cure' attacks, only possibly prevent future ones. In general, if you are going to take a DMD, sooner is better than later for best results. Which makes sense.

I have read that those on Copaxone do best after 10+ years of being on it as compared to those not on a DMD over the same period of time. I guess there is no way of knowing if this is really true or not. I still have a few years to go...
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Re: Why should I take DMDs? Not being rhetorical (x-post MSW

Post by 1eye »

ElliotB wrote:"Take DMDs when you start to be symptomatic"

Sorry, I respectfully disagree. The whole idea behind taking a DMD is to prevent attacks. DMDs do not necessarily affect disease progression. Taking DMDs after you start having attacks may be too late! They don't 'cure' attacks, only possibly prevent future ones. In general, if you are going to take a DMD, sooner is better than later for best results. Which makes sense.

I have read that those on Copaxone do best after 10+ years of being on it as compared to those not on a DMD over the same period of time. I guess there is no way of knowing if this is really true or not. I still have a few years to go...
What if you haven't been convinced that DMDs do modify any disease? I say, do what you can with diet and exercise. You'll be glad you did.
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Re: Why should I take DMDs? Not being rhetorical (x-post MSW

Post by ElliotB »

I agree 1eye, as stated previously, MS needs to "be attacked in every possible way" A DMD is just one additional way.

I don't know for sure whether Copaxone is helping me or not. I think it is. But for sure, I will never stop taking it until/unless I go beyond RRMS where the DMDs are not considered to be of any benefit. As is well known and as I stated previously, DMDs do not necessarily alter the course of MS, but rather they simply possibly reduce the amount of relapses (no one even knows for sure if they even really work).

And again, as I stated previously, if someone thinks they will start a DMD at some point, starting on it sooner/immediately is better than later for best results.
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Re: Why should I take DMDs? Not being rhetorical (x-post MSW

Post by 1eye »

Doctors are as unsure as you are whether anything helps. You could take a "throw the book at it" approach, but as we saw with Antegren/natalizumab/Tysabri, combining DMDs which reduce your immunity can be dangerous. My doctors would not even consider it: to the point where one combination later found to be "synergistic", namely mitoxantrone and copaxone, was expressly forbidden by my neurologist, who unilaterally withdrew my copaxone prescription, even though the doctor who prescribed the mitoxantrone, an oncologist, had specifically allowed it. These turf wars give all doctors a bad name, or smell, or reputation.

You have to be careful taking drugs when no-one knows what they do or if they work, or what causes the disease they are supposed to be modifying. Especially if you are asymptomatic, especially if they have known side effects, some of which can be worse than the disease you supposedly have, and especially when they cost more in a month than many earthlings earn in a year.
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Re: Why should I take DMDs? Not being rhetorical (x-post MSW

Post by Leonard »

thisiswater wrote:I realize this could be on the drugs board, but my question is more general, not specific to one medication.

I had optic neuritis 7 years ago. I was not diagnosed at that time, was not tested, the ON resolved and I didn't think about it. With a couple of *minor* exceptions (numb foot), I have been asymptomatic ever since. A couple of months ago I went to the ER with a very bad exertion headache and the MRI/CT scans showed new lesions. My LP was positive for oligoclonal bands.

My neurologist has offered me Copaxone, but he sincerely understands my taking it or not. My question to all of you -- who are more experienced than I am -- is what are the arguments for and against taking it? I'm 58 and remain asymptomatic.

Many thanks in advance!
I would advice you to take anti-viral medication such as valacyclovir.

You may keep MS at a distant by keepimng the virus down.

Further info you may find on http://www.thisisms.com/forum/general-d ... 27300.html

The average neurologist does not understand MS.
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Re: Why should I take DMDs? Not being rhetorical (x-post MSW

Post by lyndacarol »

thisiswater wrote:I realize this could be on the drugs board, but my question is more general, not specific to one medication.

I had optic neuritis 7 years ago. I was not diagnosed at that time, was not tested, the ON resolved and I didn't think about it. With a couple of *minor* exceptions (numb foot), I have been asymptomatic ever since. A couple of months ago I went to the ER with a very bad exertion headache and the MRI/CT scans showed new lesions. My LP was positive for oligoclonal bands.

My neurologist has offered me Copaxone, but he sincerely understands my taking it or not. My question to all of you -- who are more experienced than I am -- is what are the arguments for and against taking it? I'm 58 and remain asymptomatic.
In my opinion, vitamin D tests need to be ordered routinely! I doubt that a vitamin D3 test was done for you 7 years ago. The vitamin D3 supplement you take would skew the results of the test now, but it would still be useful to know your serum status – maybe the supplement dose is not adequate to optimize your serum level.

Preventive effect of vitamin D3 supplementation on conversion of optic neuritis to clinically definite multiple sclerosis: a double-blind, randomized, placebo-controlled pilot clinical trial.
http://www.ncbi.nlm.nih.gov/pubmed/23250818

Abstract
Multiple sclerosis (MS) presents with optic neuritis (ON) in 20 % of cases and 50 % of ON patients develop MS within 15 years. In this study, we evaluated the preventive effects of vitamin D3 administration on the conversion of ON to MS (primary outcome) and on the MRI lesions (secondary outcome) of ON patients with low serum 25 (OH) D levels. Thirty ON patients (15 in each of 2 groups, aged 20-40 years) with serum 25 (OH) D levels of less than 30 ng/ml were enrolled in a double blind, randomized, parallel-group trial. The treatment group (cases) received 50,000 IU of vitamin D3 weekly for 12 months and the control group (controls) received a placebo weekly for 12 months. Finally, the subsequent relapse rate and changes in MRI plaques were compared between the two groups. Risk reduction was 68.4 % for the primary outcome in the treatment group (relative risk = 0.316, p = 0.007). After 12 months, patients in the treatment group had a significantly lower incidence rate of cortical, juxtacortical, corpus callosal, new T2, new gadolinium-enhancing lesions and black holes. The mean number of total plaques showed a marginally significant decrease in the group receiving vitamin D3 supplementation as compared with the placebo group (p = 0.092). Administration of vitamin D3 supplements to ON patients with low serum vitamin 25 (OH) D levels may delay the onset of a second clinical attack and the subsequent conversion to MS.
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Re: Why should I take DMDs? Not being rhetorical (x-post MSW

Post by mariacallous »

The new drugs and beta interferons can work. There is no need to be snitty about them. I'd have to think long and hard about Tysabri, but that would depend on my state of MS. If aggressive, stronger drugs can really help.
I have done very well on interferon beta 1a. 15 years with few relapses. You never know. You may too. I'm well. Can walk without a stick. I sing for a living. Classical and opera.
I would have loved to stay assymptomatic. DMDs can prevent relapses. They have done in my case.
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Re: Why should I take DMDs? Not being rhetorical (x-post MSW

Post by DrGeoff »

When I was offered a DMD (my choice, interferon or Copaxone) I dithered for six months.
In those six months I had three relapses.
I wish I had started (Copaxone) immediately.
Geoff
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Re: Why should I take DMDs? Not being rhetorical (x-post MSW

Post by MSbro »

As one can read from all the responses so far, what can work for one person does nothing for the next. You can take a DMD and end up having all kinds of attacks or it may reduce the number.

Despite all the advertising by the drug companies who make these medications it still has not been proven that over the long run these drugs do much if anything for your MS. I was reading about a report by I believe is the Cochrane Group who stated that Copaxone was all but useless in the treatment of MS. Others say differently. So how is the MS patient to decide what to do?

What I believe is the most important treatment is to live as healthily as possible....proper diet, exercise and lifestyle. Try and keep your body as fit as you can and hopefully the MS won't have as good a chance to cause havoc with you. Of course even doing that does not guarantee anything when it comes to MS.
thisiswater
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Re: Why should I take DMDs? Not being rhetorical (x-post MSW

Post by thisiswater »

Thanks for all responses everyone. I started Copaxone yesterday. The injection was nothing; for once I'm happy to have some body fat! lol. I'm working my way to eating the Wahls way, starting with green smoothies while cutting back on refined sugar and carbs.

Also, my activity plan includes Pilates, Yoga and horseback riding... so I'm on my way just battling the depression that keeps me passive. :( Am on antidepressants.
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