Who is not on shots..and why?

[mjan]

As I am trying to make or confirm my decision about taking DMD shots.. I would like to know who is not on DMDs or stopped them and why?

Thanks, Jan

[KoKo]

Hello Jan

I'm not on any DMD, and never have been.

My neuro, along with 3 different neuros at the Mellen Center for MS in Cleveland, told me the DMD's would not be beneficial for me. My MRI lesions have never shown signs of inflammation, (the drugs are for the inflammatory type of lesions) just black spots from cell degeneration. (PPMS)

I figure if 4 different sources have told me the same thing (and I've researched on my own too) there must be some truth in the reasoning for not taking the drugs.

Good luck with your own personal decision

Take care,
KoKo

[JoanFrances]

Hello mjan

I am not on the shots.

I have seen like 5 different doctors and only one even mentioned the shots.

Back when I was dx, the shots were not even available. Then when they did come out there wasn't any history to look at except for studies, which I personally have no faith in.

I have been blessed getting by so here I am 20 years later. I have sworn unless I have nothing else to lose I would not go on something that could give me something else. It hard enough dealing with the MS. I am now 64 and age it's self can do things to us LOL

Good luck with you decision. We have to do what we think is best for us and not be influenced by others around us.

Hugs go out to you

[Jenny3838]

I could not have said it better.

Good luck with you decision. We have to do what we think is best for us and not be influenced by others around us.
Hugs go out to you

[mac]

Hi, I am not on any DMD's. I took Copaxone for 18 months, but had really awful reactions to the shot that kept getting worse. (just the way I personally responded to the drug) My MS specialist at Hopkins told me to stop.
I expected him to put me on something else, but he didn't.

I do not have any inflammation, and the drugs are for decreasing that, so he tells me because I am progressive now there is nothing for me.that would help. I know some have been approved for SPMS, but when I asked him he said they are of little benefit and again explained that I have axon damage but no sign of inflammation. He said he will be very aggressive when he needs to be.

I had MS for a long time before I was properly diagnosed and by that time I was already secondary progressive.

I wish you luck with your decision, hope all goes well for you, mac

[hunterd]

wow, i guess i`m in the minority. i`m on copaxone daily, it is to slow down the progression of disability. it does not work (so they say) for ppms. my dr says i have spms even though i`ve never had a flair. good luck jan.

dave

[Carol]

Hey Jan,

When I was first diagnosed with MS, I read up on everything I could find about MS and treatments. I am horribly needle-phobic and can barely tolerate taking pills. I did start taking 3 mg of LDN a year ago because of all the good things I was hearing about it.

My first flare was 10 years ago and my second, diagnosing flare was four years ago. Both happened at times that I had gotten overwhelmed with work and family. I made some changes to alleviate some of the issues and am trying to get more exercise and watch what I eat. So far, so good. (My neuro did mention treatment for CIS 10 years ago but I declined.)

I'm not saying I'll never take a DMD; but my MS will have to be worse to me than the treatment and it's side effects. I've found that once I'm scared enough, anything is possible! So far my MS is very mild.

It's important that you do what is right for you. For me, even if, down the road I find that I would have been better off to have used DMD's, I've still got 10 really good years behind me that could potentially have been miserable with side effects and the stress of taking shots. I will have no regrets, but only you know how you will handle the results of your decision.

Always remember, whatever you decide, you can always change your mind if it doesn't go the way you hoped.

Carol

[newme]

I'm like Dave. I have been on Copaxone for 6 years. My old neuro said I was "probably" spms but have never had a clearly defined flare.

Every once in a while I think "is it working? Is it worth it?" but then I think about where I might be if I wasn't taking it.

My new neuro says he believes that there are different diseases that all have the same outcome (the multiple scarring of the brain) and that until they can say what causes one or all of them, we should not give up possible treatments. So I keep shooting away.

[onlyairfare]

I took Copaxone for about 6 years after I was "officially diagnosed" in 2002; I had typical MS symptoms since 1975.

Although I had some redness and swelling from the shots, and found daily shots a nuisance, the main reason that I quit was because my insurance changed from a flat co-pay of $50 or $100 per month to 25% of the list price for a "Tier 4" medication. The list price was $3,200 per month in 2008 (vs $980 in 2002), so I was required to pay $800 per month cash out-of-pocket.

We are fortunate in that my husband and I both work in good jobs, and if we sacrificed everything else, I could have scraped up the $800 per month. However, our youngest was in college so I decided to quit the Copaxone and use the money saved to see that our son graduates debt-free.

Frankly, I don't see how most people can afford to take DMD's - funny they all cost about $3,000 per month, so I wonder about price-fixing. Our health insurance premiums are $900 per month, and most meds, doctor visits, lab tests and X-rays/echo/MRI also have substantial co-pays. For us, it was adding up to $25,000 per year in out-of-pocket costs. Who one earth can pay that, other than billionaires?

If I could pay less than $200 per month, I'd take a DMD. Why not? It might help and it wasn't really hurting much, I can live with a sore leg or arm. But $10,000 per year for "maybe it'll help" was too much for us, what with a kid in college and all.

[sgrammied]

I am no longer on any DMDs. I did try Rebif, It put my liver studies way off the charts. So stopped that. Then tried Copaxone. Had an allergic reaction.
All I get now is IViG every two weeks.

[Domino]

I tried Avonex, Rebif, and Copaxone. Neither of them cost me over $35 a month. I was on a normal PPO insurance plan.

When I was first given the choice of taking the medications, it was explained to me by an MS specialist that these medications only had a 30% chance of slowing progression which would only be noticeable over 10 years.

I decided it was worth trying at least.

I am SPMS and Ive been off of medication for almost two years now. My MS progression is very aggressive. I also had a hard time with each of them and the reactions and side effects from them was more stressful on me that it wasnt worth it any longer.

My body needed to have time between the relapses to destress and recover. When it was being hindered by my bad reactions and side effects from the injections, it only added more stress to my body and gave me less recovery time which made the next relapse difficult to get through.

Im still watching and waiting for other medications to start showing promising results but I have a heart condition now that limits me to what I can take with the current meds that are on the market.

[DianeD]

Almost two months now

I'm on Copaxone, but feeling worse since i started. I'm more fatigued and also have injection site reactions. I see my neuro in about a month and I'll decide then.

I like my neuro, but not sure he is right about my ms lesions. I am supposed to be RRMS; I am almost never without fatigue, with or without C.

Frankly, it is irksome that the neuro has said different things over the course of a couple years. First he said I didn't seem to need the drugs; then he reversed. He'd seem to forget me over the course of a year.

I know docs are busy, but we do fill out extensive forms and give all kinds of info. Do they read them.

If possible, I'd recommend going to a hospital or clinic which specializes in MS. I'd make a point of getting my results from MRI's on a disc. Keep them; they can be misplaced over the years or you'll move and they charge you to get copies or whatever.

Get a diary, keep it up faithfully; make notes when you see the neuro and take it with you so YOU can check out how factual the info you get is.

Also, read up on DMD's and keep in mind there is really not many people who can prove they are better off or would have changed over time anyway.

I am told that the Copaxone works best if you are RRMS.

I take mind with little optimisum. I am willing to be surprised though.

Diane

[Jenny3838]

I often wondered how Ann Romney came to the decision not to use any DMD's. She was diagnosed in 1998 and is being treated by one of the top MS physicians in Boston. Apparently she is doing great. She says that she treats her MS with diet, supplements, exercise and a positive attitude.

[snminnow]

When I found out I had MS two years ago they wanted to start me on Copxone but I didnt want a daily shot and the side effects that came with it. I looked into doing a clinical trail study and I was accepted in Feb 09 and am still taking the trial drug 'fingolimod'. I have never done any of the meds that require shot and never will... as long as I can take fingolimod, or I am healthly enough to avoid taking the DMD I will avoid shots

[freedom1]

no longer take shots

I have been on rebif, betaseron and copaxone. I no longer take anything. My dr explained that the shots only have a 30% success rate. After a year on each of the above drugs my ms has continued to progress. Apparently I didn't fall into that magic number so about a year ago I decided to stop them.

I can honestly say I feel better without them. No more fevers, chills and sore injection sites. However I am no longer working and I'm sure that has something to do with how I feel. As of today I take no drugs at all.

I do take vitamins, minerals, extra D and magnesium, eat a vegetarian diet, walk as much as possible, do yoga, and get plenty of rest.

If I had to do this all over again I probably would take the drugs. If you are lucky enough to be in that 30% they are well worth it.