Hi Everyone,

I wrote in a few weeks ago, and introduced myself and then wrote about steroids.

Well, I chose not to go the steroid route because my exacerbation was minor and is subsiding. I have had it for about a month now, but with the way things are going I think it should be over in two to three months. My left foot no longer feels like it is in a bucket of cement.

My neuro has been pushing me to go on Copaxone again. And another neuro in the practice does not think I need it as the form of MS I have is very mild. So I am waiting for a referral to an MS clinic at a hospital in Boston. If I don't get it, I will pay to go myself for a third opinion. I have Medicare insurance and I pay for a supplement, but even still Copaxone will cost me $20,000.00 over the next 5 years. I can think of a lot of things to do with $20,000.00.

I have no loss of strength or balance even while I am having this exacerbation. This is my first exacerbation in 14 years.

Just wanted to hear from other people who have this in the mild form that I do and their thoughts on the MS medicines.

Cathy

I am/was considered mild.

I was scared to death and really listened when they told me how damaging all this could be and I really needed to start a med NOW so I went on Betaseron. 2 months later my liver functions were SOARING! it was frying my liver! I felt fine, but scared the clinic.

They continued to tell me horror stories about folks that didnt get on the meds, and how NOW is the time to take advantage of these meds, and while they are expensive, so is my eye sight, and will this next attack be the one that robs me of my sight, or my ability to walk...Scared the huband to bits. So, we washed off beta and went onto copaxone. I took the shot everyday. It burned like mad/wild bees on steroids. Some folks take six months for it to show its working, others up to a year. I took the full year and then some. Each shot ate more and more fat pad out from under me, and with each passing month i felt like I lost a bit more of me. I begged for the last year to be let off the stuff. I got lectures, scare tactics and high pressure sales.

I did my own research. ALL DMDs with the exception of Tysabri have about a 33% chance of preventing the next relapse. (they argued but what if THAT relapse is the one that takes your ability to walk?!) And if you do end up in a relaspse it has about a 10% chance of making that relapse less severe or shorter. Those are bad odds if you ask me. TY has a much higher track record and is covered under major medical due to its being administered in a hospital or clinic setting but its only a 37% chance of preventing the next relapse. It also comes with the risk of PML or a brain infection that can really do some damage. After a truck load of research the husband and I decided to go armed to the MD for our next visit. We laid out the facts, reaserch and our opinion and said "we quit, no more! I would rather be in a wheel chair and have my wits about me than not be able to function mentally, and be a blathering idiot who can walk around" With that, he glanced at our papers, said he knew all of these facts and agreed that it was our choice, and with that, I had my last shot.

I eat a spectacular diet. I exercise. I try to have a good attitude. I am working hard to look stuff up for myself, and lead a well balanced life. Do I still have MS? yep! you betcha! has it progressed? yep, it has, but it was progressing in tiny increments even while on their meds. From what I can tell, I have pretty typical symptoms, and pretty typical reactions. FRom the fuzzy vision when I am hot, to the MS hug. On some things like it affecting my Vagus and Phrenic nerve, I am not so lucky, but that has been an ongoing issue for decades.

Bottom line is that YOU and only YOU can make the choice to take or not take the meds that come with this disease. STudies DO show that folks who take the drugs fair better in the long run. STudies do show that folks on the drugs have fewer, and shorter relapses,(ONE less per calendar year) but studies also show a truck load of folks quit because they simply cannot deal with the side effects. So, drag out your best reading glasses, turn on the over head light, and start reading. I hope what ever lane you choose that you do it with information, and insight into how it fits YOUR life, and YOUR situation, and YOUR finances and YOUR motivations. In the end, that is the best you can hope for.

by the way, boston is GREAT! I chose to go to Dartmouth, but it was a close call.

I hope you feel better. Thats MY story, and MY way. Let us know what you decide.

by the way, if you really want to do the meds, and cannot afford it, try for a clinical trial. They are FREE for at least a year I think. Good luck!

I guess mine is mild too, compared to others who post here. I am on Copaxone and have been on it for three years and have been stable without any more liesons. I pay nothing for my Copaxone. I have Blue Cross ins through GM...(my husband's employer). My copay is 20% a month...which is huge. I contacted Shared Solutions who sent me an application for a grant (govt.). I filled this out and sent copies of W2's...that sort of stuff, my our household income is over $85k...I was awarded the grant...I pay nothing for the Copaxone. I am very greatful for this. I could not afford the nearly $500 a month it would cost me for my copay. If I didn't have the grant, I would not use Copaxone at all. Maybe I've been stable because of the Copaxone...I guess I'll never know. My advise to you is to contac Shared Solutions and ask them about their assistance program. Good luck to you!

when I did copaxone, I somehow got a deal for only having to pay $50 a month. (went up and down a couple of times on cost. Not sure why)

I dont remember what I had to do to get the C for $50 a month. Not sure if it was some special deal with my insurance, or if it was a deal with shared solutions.


Quit Copaxone in...2009? 2008? after suffering a year or two of harpooning myself. The C ruined my skin on my stomach and thighs, and I was getting a LOT of yeast infections that was apparently a side effect from the C. I think it was the yeastie beasties that annoyed me so much that I quit the C.

Well, the yeast infections, and my neurologist making the mistake of telling me that he didnt think ANY of the injectible drugs worked for MS was what made me stop taking the C.

Took anywhere from 6 months to a year (cant remember now) for the constant yeastie beasties to go away.

I didnt feel as if the C was helping me anyways. I was having just as many exacerbations a year on the C as I've had being off the C.

What really annoyed the heck out of me, were the constant calls from Shared Solutions. They'd call up to make sure I'd been stabbing myself with their crap, and if I gave any kind of indication that I skipped a shot, I'd get lectured by the person on the phone. If they'd been in the room with me, I'm sure they'd be doing the whole pointy finger and yelling at me kind of lecture. They were really really nasty. (I'm not a fan of that company at all. Wish they'd take me off their spam email list)

i was dx'd in '03 at age 53. my neuro thought i'd be in a wheelchair already in '10. i'm walking with a cane, am independent and still drive. but, i've been on copaxone all this time too.

when i was first dx'd and did a lot of research and reading i decided i wanted a dmd. i was too afraid to be on nothing. i guess i still believe that MS is a progressive and non-curable disease. i believe that eventually the MS will flare and the damage will be done.

one day i may change my mind but as of now that is my thinking. it's an individual choice.