i've decided not to take the meds... I have a ?

[Jules A]

Like others have said without trying something personally I would not be comfortable taking the gamble not to treat. I had 2 flares in 6 months prior to starting Copaxone and none in the 6 years since. Who knows if it is the medication or just my disease process but I'm not taking any chances.

I do have some signs of progression and don't for one day forget that I have this disease which is chronic/progressive but I have been able to continue working like a dog and continuing with my graduate level education on a full time basis and much of that I attribute to Copaxone.

Maybe it is because as a nurse I have seen many times over just how miserable this disease can be but no way am I taking anything for granted and I will try whatever is available. I know most here try to be upbeat and positive but please don't ever underestimate the degree of havoc MS can wreak on young lives.

[Lendi]

I talked about going off once to my neuro, I was in denial about even having this DD. He said, ok you can try for 6 months and see what happens. Then, he pulled up my MRI and showed me why I do have this DD. I decided to stay on meds but I have to admit I've struggled a lot at with them at times.

Going off and staying off is a very personal decision, one that I bet each of us has struggled with at some time. I'm on tysabri now and I have to admit that I handle it much better than the shots, both physically and mentally. This being said, I wonder if I'd be better off and not even have time to be on this board if I had actually taken my shots like I should have.

One thing that keeps me going are my children:

I recieved a book from my very dear DD. A Charlie Brown Christmas. Aren't we all a bit like Charlie Brown?

Inscripted was "Thanks for always making the holidays so special." I'm very grateful that I still have the ability to do that.

I just want to encourage you to look towards the future, not just today. Whatever your decision, much, much luck for you.

[toot2818]

Always wonder???

Good to read all the responses.

For me I just wonder if when I was first DX in Sept 1986 (MRI), I would have agreed to be part of the test program for Betaserson. My doctor signed me up--there was a "lottery". My name did get picked BUT because it was so new, my doctor & I decided not to participate. I was doing well at the time, only had tingling in my legs.

14 years later, April, 2000, I saw a new neuro (health insurance changed) and I had an exacerbation. She couldn't believe I wasn't on one of the A B C Drugs. Another MRI(not much change) I started daily shots with Betaserson. Back then you had to mix the stuff before you could give the shot. It wasn't fun but I did it. Then I wondered if I'd started back in 1986 would have had problems?

Three years later, 2003 I was not doing well and again my health insurance changed and my new doctor had me take a MRI & blood test. The Betaserson wasn't working--he put me on Copaxone.

So today I wonder, had I started the drugs back in 1986 would I be in a different place? So much more info is available today then 25 years ago.

Just something to think about

Toot

[SNOOPY]

So today I wonder, had I started the drugs back in 1986 would I be in a different place?

Hi toot,

I have always found the thought process we each go through regarding the disease and treatment quite interesting.

You wonder if you would have done better MS wise after all these years had you started with the clinical trial for Betaseron in 1986?

I was in the lottery for Beta when it became available to the general MS population in 1993...my doctor and myself decided against it, too many unknowns.

I wonder if I would be worse had I started taking Betaseron and the subsequent DMDs to follow.

There is still so much not known about this disease. There are no wrong decisions when it comes to this disease. Each person has to do what they feel is best for themself and their health.

This disease is a crapshoot regardless if you take a DMD or not. Which choice (DMD or no DMD) can you live with and have no regrets?

Jules, is correct...this disease can wreak havoc on our lives...and those that love us.

[lemstar]

snoopy--interesting point--could any of these meds make things worse? i started on Rebif with sensory symptoms in my arms. After two days, I felt a tight band around my left foot, after two more days, both feet, and legs. I called my neuro, and could not get an answer, nor could I talk directly to him. Needless to say, he is not my neuro now. That was two years ago. I am not on anything now.

[Spydre]

Sunshine, I know this is has been a difficult decision for you, and I don't know how old your daughter is. The incidences of major problems with side effects, like mine, are slim. Most people get very little side effects from it. I would recommend you either try it for a while (the first week would be the worst), one person suggested fresh pineapple to me before injecting. It didn't work for me, but for others on my mailing list it did.

Or go to your doc with your concerns about the flu like side effects, and ask for something like Copaxone, with a smaller side effect profile - well, at least a more tolerable side effect profile.

Studies have shown when MS is caught and TREATED early in women, they have better outcomes, but generally, but again, you have to get treated for that.

I can understand why you are afraid, but actual horror stories only happen once in a while.

[workinmammaof2]

consider TRYING one...

I also suggest giving SOMETHING a try. If you are worried about the side effects of Avonex (or Rebif/Betaseron for that matter), I would also seriously consider trying Copaxone. No flu-like side effects at all. Once you get used to it, taking a daily injection just becomes part of the routine.

Personally, I began treatment after just the first clinical event based on the Avonex trials for "clinically isolated syndrome". My MRI showed only about 3 lesions, I think. Spinal tap showed increased protein - all other tests were ok. This was in 2001. I did have major side effects from Avonex, but I did well from the MS standpoint. Switched to Copaxone after first child - tolerated it very well however after a few more years had a couple of exacerbations on it within a few months. Needed to switch. Gave Rebif a 6 month trial - too many side effects and now I am on Tysabri and doing VERY well.

I think that if there are meds out there than can "modify" the disease process that I should try them. That is my perspective.

Good luck to you - Again, I recommed you TRY something - Copaxone, perhaps.

[opiegirl]

Sunshine,

So sorry you have to deal with this, it's a decision non of us want to make.

I recently went to the RMMScenter and the Dr. there is going to monitor me without taking meds. I left there with him saying "See you in 6 months for an MRI"

I agree with Snoopy that

I wonder if I would be worse had I started taking Betaseron and the subsequent DMDs to follow.

My last MRI showed the lesions in my brain had decreased in size an quantity. I looked at my Neuro and said, "If I was on the DMD's you'd be telling me they're working". We both new that was not true...I've never taken meds for the MS.

All this to say, We don't know, we just don't know. I do what I can do to keep myself healthy. I follow the MS diet, exercise, have a positive outlook and try to keep stress out of my life.

I am not anti-med, they just are not for me. I have no regrets in my decision and I hope you won't either.

[Bob698]

Snoopy; I think the gist of this thread is making a decision vs. making a better-informed decision.

[HereIam]

Sunshine,

I'm going to beg you, BEG YOU, for the sake of your children, to try a DMD. Try Copaxone, if the Avonex side effect profile frightens you. However, many people are on Avonex for years and years and live very full and healthy lives. Some still get a 12 hour reaction, but that is little cost when compared with disease progression.

You do not want to be where I am now.

[SNOOPY]

Snoopy; I think the gist of this thread is making a decision vs. making a better-informed decision.

And I have done both.

Being 24 years old at the time of diagnosis and hearing I have a chronic progressive disease which had no cure or treatments scared the crap out of me.

I was and am very informed about the disease and the treatments...I followed many of the clinical trials. I have also sat and listened/watched all of the informational packets for Betaseron, Copaxone, Rebif, and Avonex (felt like I was watching one informercial after another ...buy and use this product because....)

I am not impressed and I do not believe these drugs work as well as we are lead to believe...my opinion and if nothing else, I am opinionated

I am not the only one who does not use the DMDs, each of us has a different reason.

[Bob698]

Yeah, but you're not the subject of this thread.


All we can do is post our experiences and the legit research. I could also raise you one by showing my first crainial MRI and the last two since I started a med.
Again, we're all different but sometimes you have to go with the percentages.

And I have done both.

Being 24 years old at the time of diagnosis and hearing I have a chronic progressive disease which had no cure or treatments scared the crap out of me.

I was and am very informed about the disease and the treatments...I followed many of the clinical trials. I have also sat and listened/watched all of the informational packets for Betaseron, Copaxone, Rebif, and Avonex (felt like I was watching one informercial after another ...buy and use this product because....)

I am not impressed and I do not believe these drugs work as well as we are lead to believe...my opinion and if nothing else, I am opinionated

I am not the only one who does not use the DMDs, each of us has a different reason.

[MrsBones]

And I have done both.

I took Bob698's post to be a reference to the OP's decision, which may have been a little less researched and thought out then some of us might believe wise.

I didn't see the comment directed to you as in your decision not to medicate wasn't well informed, but that the topic of the other posters at that point was to encourage the OP to make a well informed and thought out decision whatever it ultimately might be. An effort, if you will, to encourage us all to make our decisions being mindful of what we can realistically expect from our choices and their possible outcomes, good, bad or ugly...as you have done.

While our choices have been different, we do have respect for each other's views on the matter, only giving specific opinions on the drugs/no drugs when asked for them. However, one part of the whole decision making process we definitely agree upon, is to know everything possible about our options and their consequences before choosing what to do or not do.

No offense to Sunshine008, I certainly mean no insult, but from reading a few of her posts, the choice may have been a little hurried and might be based on more of a gut reaction,expense and maybe some fear of meds than truly considering all of the options and what they might entail, both what you can realistically expect from them and what you might actually have to do to make it work to your best advantage.

[sunshine008]

wow thank you so much for the incredible amt of support, time and effort and sharing you all did.

i was out today w/my mom who actually took me to lunch! amazing what ms can do our first lunch ever btw.

i'm a big researcher, years ago i was a paralegal i guess it's just part of what makes me me. So i've spent alot of time researching and there are a few things I dont' understand yet will ask the neuro when i see him next.

I go for my next round of mri's on tuesday, i'm getting spinal mri and brain mri with contrast to see how active it is in my brain and see how the spine's been affected.

Anyway, I hear alot about combatting symptoms, and many say their progressing w/o symptoms being present. tha'ts where i disconnect a bit.

My neuro said all ms is is symptoms. if your not symptomatic and able to cope thru via diet, exercise etc. than we're good.

so if the disease progresses and we have no symptoms of progression for some, than what is the overall affect of such progression?? in functionability?? am i making sense? LOL.

To be honest, my husband had a restaraunt before we married. It's a second marriage, we just married in July actually. So, he's gone almost all the time, he's only off two days a week on weekdays, my youngest who i adore has several issues and i'm working hard at making her more independent and finding her way, we're switching meds again. so i feel very bad about adding to her existing anxiety by allowing her to see me laying in bed for days over the weekend due to being sick from the med. she has a ton of anxiety was diagnosed with bipolar and ocd many years ago.

Also isn't there the quality of life issue at hand to some extent? if and i say that cautiously if i have side effects which my family and I are thinking I will i've had allergic reactions before very bad over simple meds. than how can i do all that i love to do for me, all that i love to do for all our kids if i'm laying in bed unable to function?

I'm really active, i just joined gym, that'll be 3x a week, i do yoga 2x a day i have to now to get thru, i garden, horsback ride once a week, i take her to therapy, dance lessons etc. outtings with the other 4 kids. well you all have a busy life so you get the idea......

Also on another note I sat quietly thinking about my past health issues experiences etc. I'm the type unfortunately that hardly ever went to a dr. i'd have to be bleeding out to go lol. i began migraines suddenly quite bad in my mid twenties the doc put me on meds they were so horrific. it lasts for about 3 mos than stopped than picked up again. I went thru this for 2 years. than that stopped and exhaustion set in, than we have the dropped foot and twisting my ankle on the way to work than finally about 6 years ago my eyes blurred when getting off train to work.

that's when i knew something was up. so my point is i think i've had this for a really long time. i'll know a bit more to see which lesions are active after tuesday.

i'm just very nervous about not being able to be there for my family, i have no and i mean no one to watch over my daughter if i am laid out by this. I'm supposed to go finish up my bachelor's degree in september so i can counsel people and help others. my passion.

anyway this was way too long. yes isn't it odd i'm in it each day?? i keep waiting for it to let up yet it hasn't.

[Jules A]

I can understand why you are afraid, but actual horror stories only happen once in a while.

Your advice was spot-on imo but I disagree with this statement.

According to the NMSS 90% of people originally diagnosed with RRMS will progress to SPMS within 25 years. 10% will quickly be diagnosed with PPMS with another 5% being diagnosed with PPMS at onset.

So if my calculator and MS brain is working based on the estimate of WHO study 1.3 million people world wide, which is considered a low estimate, with MS I take it to infer:
195,000 people world wide have PPMS
994,500 people eventually will progress to SPMS

Either PPMS or SPMS are the things "horror stories" are made of so to me this is way more than "once in a while"
Basically only 8.5% of us will remain RRMS.
Somebody proofread for me, is my math close to being correct?

http://www.nationalmssociety.org/abo...sis/index.aspx

http://www.who.int/mental_health/neu...las_MS_WEB.pdf