Meds Or No Meds?
 

I do not take any MS is there anybody else? If you don't would you tell me how you are doing? DX in 1979

Hello, boomer lady.

Well, you have been diagnosed longer than me but like you I have never used the Disease Modifying Drugs (DMDs) but then again there weren't any when we we dx'd ;)

How I'm doing - pretty darn good and my neuro agrees. I do have some symptoms but except for my current pelvic pain/pressure symptom which makes me want to scream :rolleyes: I have learned to deal.

I was dx'd in 1986, symptoms since childhood and I am 46.

The real question - How are you doing? ;)

I've had MS since 1991, at least, and haven't used any DMD's or steroids. That wasn't because of good (or bad) planning though, it was just the recommendation of my neuro(s) based on being mostly spinal lesion afflicted, AND because drugs and I don't get along at all. :(

I have been on LDN since early 2005, and it has helped. I am still RRMS, and relapsing occasionally, but my EDSS reduced after starting on that drug, and has remained constant since then.

There are good times and bad. :cool:

Cherie

re Meds
 

I opted for the DMDs, Copaxone is currently my only option due to other conditions. I decided to medicate for a few reasons: First, because of how quickly symptoms came on as soon as I was dx'd. Second, how I could have been undiagnosed since 1970s. Third, research has shown that brains of those with MS show atrophy, which is decreased with the use of DMDs. I don't want to mess with my brain. I feel extremely lucky to have access to some excellent expert care and my doctors all recommend DMD, as well.

But, with everything, its up to you. I suffer no serious side effects from the copaxone, and luckily my insurance (thus far) pays most of the costs.

Have had MS since 1974 - started Copaxone last Friday - had an problem in April 06 and walking has been going steadily downhill - neuro thought it couldn't hurt to try to stave off anything coming my way -

I was diagnosed in 1977 and am not on any DMDs either. I'm doing OK having just recently retired frrom the work force. I use a cane for stability because of frequent falls but other than that, am very mobile.

? for those that don't do DMD's, doesn't your neuro get upset that you don't want to do treatment? I mean it's different if your turning down a pain med but when it comes to something that might help you slow down the rate at which the MS get worst.

Not trying to start anything, I just want to know how a Dr. is with someone not doing DMD's.

When Betaseron became available I had been in the lottery but as my number was close to coming up my neuro and I decided to wait since it was the first drug of it's kind and there were alot of unknowns. Through the years my neuro would just tell me if I ever changed my mind about a DMD to let him know.

My current neuro does not want me on the DMDs - since there is no way to know how I have managed as well as I have all these years there is a concern the DMDs could possibly cause problems rather than help.

Mom - that is an interesting question - one I was pondering - also...

At my last visit with my Neuro - she said that she needs to get a firm dx if indeed I do have MS because she believes in treating "aggressively".

What I didn't tell her is - I don't plan to take DMDs... I also have very bad reactions to drugs and I just don't know if I am ready to take that next step - when / if I ever get a dx. I think my Neuro will be very unhappy with me but I also think she would respect my decision.

hi, Julie.

the doc didn't say much to me when I stopped taking Copaxone three years ago.

I told him, and he's all, "Okay."

probably because the neuro I'd had for a decade (that I adored) had just retired, and the new one, well, we only had one appointment, and he wasn't really paying attention.

the Copaxone people called a twice, and then never again.

sorta like, do what you want, no big deal...

I've had MS for 20 years, and am SPMS...

Yep.
Went from not taking an aprin for the even the worse hangover to all kinds of pills, and vitamins and shots when I was dx in '03. Tried Rebif, didn't like it. Now on Avonex and ADs and anti-anxiety meds.

When I was first diagnosed the fatigue was killing me. For some reason now, I don't need the Provigil as much as I did back then.

But that's just me...

My Neuro - the same that diagnosed me in 74 said a couple of years ago that the Northeast was the last area of the country where people had a choice if they wanted to take a CRAB or not - in the rest of the country the doctors assumed that the patients would go along with their suggestions -

But it's up to each of us - I went for 34 years without taking anything other then ACTH in the early days and was doing pretty well - then in 06 my mother died - not that it wasn't expected as she was 95 - on the day of her service I started going numb from the waist down and my walking has been steadily deteroriating since then - my conclusion - none of us know - as we all know - what MS has in store in the next hour - the next day - the next month - the next year -

It wasn't an easy decision - after all who really wants to be sticking themselves with a needle every day or so and in reality who really knows if these meds work - especially on those of us who have had MS for some time - but I decided I would rather be as prepared as possible - thus the decision to start Copaxone at the ripe old age of 63 -

I think things might be different in Canada, or at least where I come from. I have had 3 different neuro's along the way, and only the last one tried to convince me into at least going through the CRAB presentations.

Canada has the highest known prevalence of MS in the world, and many of the trials (for the CRABs and other drugs) and are done right here in our research centers. Our neurologists and specialists are very aware of the pros and cons to such treatments, and because the efficacy is of them is really not that favorable, they let us chose for ourselves. They are quite willing to admit openly about their ineffectiveness too.

Our specialists are also not permitted kick-backs or favors from pharma industry. I think this tactic is also particularly persuasive/influencial in the US.

Cherie

I'm not disputing what you say Cherie, but I live in a tiny island state of Australia, and I've always been led to believe (from literature) that Tasmania has the highest incidence of MS per capita in the world. Something like 70% of Australian incidents for a start...........

It would be interesting to check out statistics for both our areas seeing we both live in cool climates......the cooler climates being one of the linking factors I believe.

GJ or anyone else who knows....how does Alaska fare in the statistics of MS per capita, being a colder state? Just curious!

Not by a long shot, Koala.

Tasmania has a prevalence of 70-something per 100,000, and Alberta has a prevalence of 300-something per 100,000.

Australia has a low prevalence overall, it's just that Tasmania is higher then most other places.

http://www.direct-ms.org/booklets/Al...sadvantage.pdf

Cherie

Thanks for that Cherie. No offence meant. I guess our information here is probably predjuced to the Australian figures.

300 per capita sure is a lot of MSers. Maybe I wasn't adjusting the data as well as it was meant to be adjusted, but I thank you for taking the time to reply to me.

It would be interesting to see data from some of the ther cooler areas as well.

Sorry to take this OT for a second . . . but to answer your question Koala, here's a prevalence map for the world:

http://i12.photobucket.com/albums/a2...s_worldmap.jpg

Unfortunately there are lots of "probables" (guesses, really) because most countries don't keep adequate stats (including the US and Canada).

I think "high risk" is defined as over 50/100,000, so that map doesn't show EXTREMES, like 200+ either.

Cherie

Wow! That map sure is impressive. At least I didn't get it all wrong! :D

Thanks for going to that much trouble Cherie. It's good to learn new things, even if it knocked the ladder out from under my feet..:)


P.S. MSers......Did you all see little Tasmania (the heart shaped island state in red) at the very bottom of Australia on that map?? That's where I live!


Addit: I wonder why Alaska is not highlighted in red when that state is colder than the more MS prevalent states. Any one know why?

Edit: Sorry for going off subject peoples but this is interesting!

Well . . . it's kinda a long story. :D

If you look closely at the legend, there are categories for:

- "probable" high risk
- "probable" low risk
- "other" risk

Now if you look at the map, you'll see MOST countries fall in those three UNKNOWN categories . . . but if you took those colors away, the map wouldn't tell much of a story. This map appears colored to supporting the North-South Gradient Risk theory.

Also notable is that Canada, most of the US, Tasmania and NZ do not appear different from each other, but we know that places like Alberta are much much higher then say, the US south, or even Tasmania (which is also red).

This is a generalized/averaged map that is meant to "paint" a picture. The stats aren't wrong, per se', but they are blended to make a specific point.

No one seems to know what "other" risk means, or why it is that the coldest, darkest, least UV/sun-rayed places (like Alaska) do not have a high risk. They would probably "guess" that it is a variance in genetics (i.e. people in these lower prevalence areas just aren't as "susceptible" to MS), but under interrogation, this argument doesn't hold water either, IMHO.

Some researchers think it is a virus or bacteria, and that does seem to explain why there are "clusters" and "hot spots".

Like I said though . . . it's a long story. :D

Cherie

Back from the map!!!

I am on DMD's (well was, took 2 week break, and will be again in less than a week!).

When I was first dx in 1996....I said NO to the DMD's - I am not one to take meds lightly, I wasn't having any serious symptoms, and I just was not taking them....Mom, doc had NO problem with that either....

Crank the wheel up to Feb 07....GIVE ME THE DMD's!!!! I was one sick sick puppy! One exacerbation from you know where took care of all my worries about putting anything in my body....

But as Doc and I discussed on my last day in the hospital...I told him, "You know when I get back to feeling better, I'll be doubting everything you tell me including the DMD's! And you'll have to be sure I behave!"

Sure enough I have been contemplating not taking this 3rd DMD....and just today a sweet friend from here told me that when she was my age and had no meds when her kids were young, she wished so much for them. And here I am, thinking about not taking them. And there are my kids.

Decision put back on yes. I will take them for my kids, even if I'm not so sure I'll take them.

I hope this helps you Julie. It is totally a personal decision. And your doctor will support you no matter what you decide. Mom, if your doctor doesn't support your decision, then you get a new one!! You pay THEM for their expertise!!! And Docs are just people!!! That is all - regular people with the expertise you need! (just like car mechanics - sorry Doc!)

Good luck!

I am able to live a pretty normal life, I have been married for 34 yrs and have 4 kids. I walk a little gimpy but I am hanging in there. Thanks for asking boomer lady

Hi, boomer lady. Thanks for posting about your journey with MS. I am not on DMDs (take a lot of supplements though!). So far so good but I am only about a year post dx.

Wow, dx in 1979, never used DMD's meds, and doing so well? You are very fortunate . . . and way to go!

Got any tips?

Cherie

I learned to always keep myself active-exercised-I used to jog a lot so when I couldn't run I walked when I couldn't walk so long I now use a treadmill. I rode bike a lot and when I could no longer ride bike I now ride a stationary bike. In other words when I lost something I just did it differently. I got to know what my body could and could not do. Try and make your body go as far as you can, take yoga classes helps with balance. I lift weights to keep my upper body strong. There have been times when I was stiffer than a board and by just keeping up movement it got better. Note do not overdo yourself just learn what your body can do and fight if your body rebels. The biggest thing for me was attitude-positive-I know there are a lot of things that I cannot do but oh there still are a lot of things I can still do (albeit kinda gimpy and odd. Hope it helps sorry for the sermon boomer lady

I'm on Beta. But my nero did tell me that should I decide not to take the shots, he wants me to know that he will be there for me just the same. Great guy!!!

Hi Boomer,

I currently take no MS disease modifying drugs. I am RRMS, dxd. 12/01. I took Avonex for 2-1/2 years but it actually made me worse. I was in pain 24/7 and was very close to filing for SSDI thinking it was my MS.

After my experience with Avonex I decided I was taking a break from MS meds. That was 2004 and I have yet to regret my decision. I recently had an attack of ON, but thankfully it was mild. I actually had more exacerbations while on an MS med than off!

As to how my neuro reacted to me stopping the meds - he said that while he wanted to see me on some type of disease modifying drug, it was my body, my decision. Good answer!

I am still working full-time and am doing well all things considered. My worst symptom is fatigue.

Another one here - no DMD's. I kinda lost interest when I drew a very high number in the Beta lottery in 1993. The FDA approval of Beta surprised alot of people - the clinical trials weren't very positive. We had a bulletin board on Prodigy where we tracked the early trials.

I did do the steroid IV thing once - in 1988. Not for MS. I was in the Optic Neuritis Treatment Trials.

I was on copaxone for less than a month in 2003. Got scared (briefly) when I saw how many lesions were on my MRI that year.

MS doesn't really bother me. I walk gimpy but it's a toss-up between whether it's due to MS or to poor circulation.

Tom