MS, treatments, the great debate

[foxz71]

I've spent some time thinking lately; perhaps not clearly, but thinking none-the-less. I wanted to hear from both sides of the fence on the following issue:

Using DMD's vs Not using DMD's

I'm wondering how you all feel as far as whether the side effects are worth it or not, whether you think they are working for you or not...your own personal experiences if you would share?

If you are not using DMD's what do you do if anything for treatment of your MS?

Thanks in advance for helping me explore this decision I am facing...

[BigA]

I have no idea if my Avonex is working or not. I do diet (Jelenik), exercise, meditation, yoga and supplement with flax oil and vitaminD.

One or all of them seems to be working because I feel well. We'll know more when I get my MRI, but truth is, doctors aren't even sure MRIs are a real indicator of Progression.

I figure that I'm doing all I can and feel comfortable doing that. I do feel a little bad taking such strong medecine, but wouldn't yet like to test whether they're helping or not. I suspect every piece helps.

[Jules A]

I have been on Copaxone since diagnosis 7 years ago. Had 2 flares in the six months prior to starting it and zero in the 7 years since. I do have minor MS stuff that has gotten worse but am able to work, attend grad school full time and take spinning classes for exercise so I shouldn't complain.

I personally am someone who embraces the things medication can do and the debates on what level of efficacy is worth it make me smile. I'd continue injecting Copaxone every night if there was only a 1% chance it would help me fight this miserable disease.

I have seen too many cases of MS at its worst not to be terrified and my side effects so far have been limited to lumps in my 47 year old thighs which really isn't a deal breaker.

I'm still undecided whether the "benefits" outweigh the side effects. I've been on Rebif since June, and I'm just waiting on my next MRI in March to see if it was worth all the hassle.

[0485c10]

I refused meds at first, then my dl came up for it normal renwal, that has to be done in person in my state, within 30 days of notice. I was recovering from my 2nd relapse after being diagnosed, i wasn't in good shape visably. The dmv refused to renew my dl without a doc signature..doc wouldn't sign unless I started a med..i wanted to keep my right to drive.. my indepedence, IT WAS TOO SOON TO GIVE IT UP!!! I wanted to keep my independence a whole lot more than i care about side affects.

so its an easy decision for me. I contacted a lawyer, does the state have the right to force me to use a med to keep my dl?. The laywer said the state owns the roads and they have to right to determine who uses their roads.

so if i do not mind giving up my dl I can choose to not use a med, the state cannot force me to use a med but they can require that i use one to use their roads.. It's my choice. My choice is to continue to use the roads to drive!

[chalknpens]

That's awful. The state does not have the right to tell a person to use meds. They have the right to decide whether you have passed a driving test. That's all.

Your doctor is being very manipulative, coercing you into using a medication to get a signature on a letter regarding your physical ability to drive. DMDs do not improve symptoms. They may slow progression. That's it. If your doctor is telling you or the state that taking a DMD will ensure your physical ability to drive, you need to get a new doctor.

[Keepin_on]

I think I may be one of the lucky one's when it comes to the meds. I have been on Rebif for 3 months and have no problems with it except for annoying site reactions. It took a while to get used to giving myself a shot, but it is not that bad really.

I don't have any other side effects that I am aware of - basically, I am not sure if my fatigue is from Rebif or MS or both...stuff like that. But, it is manageable.

I think it is just starting to take effect (takes about 3 months) so I have no idea if it is really working. I don't think I have had any relapses since starting.

For me personally, I thought this gave me my best chance of slowing my MS down. I combine Rebif with a healthy diet, vitamins (lots & lots) and exercise. I avoid gluten as well.

Good luck in your whatever you choose to do!

[techie]

I think this is a very personal choice

I was on Avonex for 7 years. I think it stopped things that were going on then. I think that I have had MS for many years just didn't rear it's ugly head except when I was under heavy stress. I don't think it will again, except if I get into really heavy stress for a long time.

Maybe it's still 'progressing' but I am willing to bet (and I DON'T gamble) that I will be okay for the rest of my life. (61)
Just my personal decision. My life, my health, my money.
You have to decide for yourself. I can see many reasons for younger people to stay on DMDs too.
techie

[0485c10]

That's awful. The state does not have the right to tell a person to use meds. They have the right to decide whether you have passed a driving test. That's all.

But after i got the doc to sign the form they then required me to pas a written & road test too. But first i had to get a doc to sign that i could drive to do the road test & the dmv is under no obligation to place one of their drivers inspectors inside the vehicle of someone who is medically unable to control a vehicle..so they have a legal right to refuse to do the test & require a doc to sign a form that someone who looks drunk can safely operate a vehicle with an employee of the state in it...the state has a legal obligation to protect its employees. the legal arguments can go round & round but the bottom line is legally the state owns the roads and they have a legal right to determine who can use the roads. In a court of law, thats just the way it is..

[0485c10]

The way the laywer explained it to me was the roads are considered property of the state and the state does not have to explain their reasons for denying or granting access to their property. Just like as a home owner you could deny access to anyone you wanted for no reason at all, just because, and the law would support your right as a property owner. the law gives the state the same rights.the state uses this right with epileptics. they must be on meds to use the roads. it doesn't mean they have to use meds if they don't want to use the roads. but they have to use meds to control their epilepsy if they want to use the roads.

[Bob698]

I started Beta a couple of years ago. The first 4 months were slightly rough but I had a head's up it might not be a picnic.
My plus-six-month crainial MRI went from to and I knew something was working when the Drs. started lining up to take credit for it.
The cool head nurse (Neuro) who had warned me about possibly getting my butt kicked while I got my tolerance up actually called me to say we needed to set an appt. because my Doc had some really great news to tell me.
Anyway, its been pretty smooth since then. Haven't done any follow-up MRIs mostly because we don't need to. If I were to feel a new SX, I'll call and we'll do one. I see the Neuro Doc every six months, she also teaches at the state's Med school so there are always interns and new residents who "just happen to be on the floor" when I show up. Otherwise, its blood tests and the normal labs.
Some of the old SX still come back and I guess I'm legally blind in one eye for good (that's what I got for waiting ten years to get treated) but I get by.

[Bob698]

I guess I should add:

A). Neither my Doc or I work for Bayer.

B). I get treated by the VA and I don't pay for meds or treatment. Last time I checked, I was classified over 80% disabled.

C). Since I got my tolerance up, I don't get side effects. Occaisionally, I might feel a chill several hours after I do my shot but that's about it.

D). Both my Doc and I are open to new meds but neither of us wants to push my luck. She asked me if I wanted to try switching to G when it came out, I said "Heck no, not unless this stops working" and she answered "Good, I was hoping you'd say that".

[hope32]

My experience:

2001: First relapse (probably 2nd relapse too though I've gotten mixed advice on that from the specialists), "probable MS."
2007: Second relapse, official Dx, started Copaxone.
Feb '08: Went off Copaxone so we could start trying to start a family a month later. Had twins, breastfed a month, took a while to get back on Copaxone (red tape with new insurance, etc.)
March '09: Started Copaxone again.
Nov '09: Had MRI that showed 4 new lesions (6 total) compared to 2 on my 2007 MRI. Now, obviously we can't know for sure if they happened while I was on Copaxone but it seems more likely they occurred while I was off for ttc, pregnancy, etc.
So for me, I'm really glad I'm on a DMD.
I switched to Betaseron in Dec '09 because of injection site reaction problems.

[hope32]

Oh and I meant to add: I've had no more new lesions in the past 2 years (since being on DMDs again).

[gomer]

I chose and started Copaxone over a year and a half ago, and after many years of decline, I have turned a corner, so to speak. For me its just yet another shot in my insulin shot filled day, (diabetic). I had stinging from the Copaxone for a while but it gradually went away. Otherwise, so far no side effects and it SEEMS to be helping.

I was GLAD to at long last be able to FIGHT my MonSter.

Gomer To each his/her own.