Experience with MS and no meds

[spcrowley]

Hi - my first flare up was in 1992 with a official diagnosis in January 2002. I have been taking Avonex injections since February 2003. It has been a long time. In the early years I subjected myself to 3 separate weeks of steroid infusions for balance issues and mental confusion/depression. I have been MS symptom free for 8 years. My Neurologist has suggested that I could stop the Avonex since I have been symptom free for so long. I am considering it because in addition to the MS I suffer bouts of depression that have been getting worse and I am concern that the Avonex may be contributing to it. I realize people with MS have a high rates of depression. Please share with me your experiences with stopping MS medication. I am tired of the shots as they are a constant reminder of the disease and I desire to feel better mentally.

btw - the spell check is great.

[techie]

I was on Avonex for 7 years

I have been off since 2007. I still get double vision and my left side is still weak from a relapse I had in July 2000 ( dx'd Feb. 2000).
I haven't had another relapse since the one in 2000.
I will perfectly comfortable not going back on any MS medication.
We are nearing our retirement years and I don't think I am progressing anyway or if I am at such a slow rate it wouldn't make any difference anyway.
techie

[lemstar]

My first episode was 31 years ago, and I was not formally diagnosed. There was no treatment at the time, so I didn't pursue it. Symptoms never totally remitted, and were primarily sensory. Then, 2 yrs ago, I had my second flare, also mostly sensory, with some mild balance and weakness issues. i was put on Rebif right away, and stayed on it for 10 months. I went off due to some other medical complications, and never went back on a DMD. At first, my MS specialist wanted me to continue. My MRIs have stayed stable, so at this point, he is in agreement with me. My symptoms persist, and have not really remitted, but it is mostly sensory, and manageable at this time.

[tommylee]

I used Avonex for 12 years.
I quit this year. (also tired of the side effects)

I am not symptom free but my symptoms did not get worse when I quit.

My consentration has shifted to diet and exercise about five years ago,that seems to help.
And I started using more MM when I quit the avonex and it seems to help me function better.

Time will tell?

[golfwidow]

What is MM ? ~~~~~~~~~~~of course I have used M&M's for years~~~~~~~~~~~but don't think that is what you are referring to

I am considering getting off Betseron.........does anyone know if you can go off for a time period and then get back on if things go south ???

[spcrowley]

Thank you all for your replies. My wife believes I am having a flare so will stay on the Avonex a few more weeks for her. I recently re-read the Avonex insert describing the side affects and medication effective. I strongly believe the medication is making my depression worst and the limited benefits of the Avonex are not worth feeling this way. I can always go back on the mediation if the flare up persist.

Stephen

[there]

You could also simply take half the shot and see how that goes.

[Thinkimjob]

I think some of us take a dmd until we're sick of it, go off it, eventually have another flare, and then try another one.
I started beta almost the day after I was diagnosed, took it religiously for 5 years, felt awful most of the time, but no flares worth worrying about. Stopped (neutropina) three years, no flare. Then a big exciting can't-walk-properly flare, started Copaxone.
Take it, don't like it, don't think it's doing much good. Stopped, will probably start again soon, out of fear more than hope.
Personally I think MS progression is really just a matter of time. And luck.

[chalknpens]

me too, tired of the injections

Four and a half years on Copaxone, believe it has accelerated fatigue, depression, pain, anxiety ...

I asked my former neurologist about taking fewer shots per week. He said no, he couldn't agree with that because the studies were based on seven shots per week.

I'm about to ask my current neurologist for a month or so of no DMDs, to see whether I regain energy and purpose. If I do, I'll stay off. I had to retire this June, two years before I'd planned, because I had literally no stamina in the classroom. I feel like Copaxone let me down, made things worse instead of maintaining where I was before diagnosis.

[inmoni5]

Four and a half years on Copaxone, believe it has accelerated fatigue, depression, pain, anxiety ...



I'm about to ask my current neurologist for a month or so of no DMDs, to see whether I regain energy and purpose. If I do, I'll stay off. I had to retire this June, two years before I'd planned, because I had literally no stamina in the classroom. I feel like Copaxone let me down, made things worse instead of maintaining where I was before diagnosis.

I went off Copaxone in August. I wonder sometimes if I went downhill so fast because of the Copaxone?? It's just really amazing that w/in 1 month I went from "normal" to "ms". Now it's a daily battle. I am not taking any "formal FDA dmd/treatments" for my ms. I take LDN and that's it.

[Softpaws]

I have been off since 2007. I still get double vision and my left side is still weak from a relapse I had in July 2000 ( dx'd Feb. 2000).
I haven't had another relapse since the one in 2000.
I will perfectly comfortable not going back on any MS medication.
We are nearing our retirement years and I don't think I am progressing anyway or if I am at such a slow rate it wouldn't make any difference anyway.
techie

I was dxed in Oct.of 1985. there were no drugs available until 1994 for me. The ABC's all made me feel worse on then off. I was RR so didn't reliaze what things could turn into anyway. I did Methotrexate for 4 years and did excellent. No symptons at all but stupidly stopped it when I decided I didn't want to put all that poisen in my body any longer. I remember saying "I'll deal with my symptons I may develope in 20 years, when they happen". Well here I am 15 years later and Sec. Prog. I'm 52 with 3 kids, the youngest my great nephew we adopted 6 years ago as an infant. 5 years ago you would never have known I had MS at all. I'm in a wheelchair now 24/7. Please think it through before you stop all DMD's. Hopefully you won't progress at all. If you do though, it's no picnic.
We're so lucky to have the dmd's we have now. God Bless

[tommylee]

What is MM ?

Medical Marijuanna. ( it's not legal everywhere, but it is available everywhere.)

And; No (like all drugs),it does not help everyone.
It does seem to help me manage constant symptoms with less side effects than other meds I have tried over the past 12-13 years.

There are lots of claims that MM can help all kinds of illness.
But official studies are hard to find.
Personally I don't think it cures anything but what does? It does make me feel a little closer to normal so I am a big fan of MM.

[spcrowley]

Hi TommyLee - does MM just mask the symptoms or does it help with recovery?

[ewizabeth]

I went off Copaxone in August. I wonder sometimes if I went downhill so fast because of the Copaxone?? It's just really amazing that w/in 1 month I went from "normal" to "ms". Now it's a daily battle. I am not taking any "formal FDA dmd/treatments" for my ms. I take LDN and that's it.

I've been on Copaxone for a very long time (more than six years total with a 3 year break while taking Tysabri) and I can't remember the last time I had a relapse. I still work full time and also go to school at night. Why don't you go back to the Copaxone since you're MS is back in action? I've thought of switching to one of the pills but I fear a relapse.

[empirerecs]

Hi -
I had to go off Betaseron because we thought it contributed to my severe depression (it didn't). It was only supposed to be for 4 weeks then start Gilenya but I had a bad cat bite and got in infection which delayed the Gilenya for about 6 weeks. In the 10 weeks off the Betaseron I had symptoms pop up. I really do believe that the Betaseron was doing it's job. I've been on Gilenya for 4 months now and it hasn't reversed the symptoms and it might not, still don't know for sure, I have had no new symptoms.

Based on my experience, I would stay on a DMD. I know there are LOTS of people who are doing great without them and that's wonderful, they are diligent with the supplements and exercise. I do those as well and it helps.