Copaxone and relapses

[Heather1987]

Ive been on Copaxone for 5 months now and 2 months in had a mild flair of symptoms then it went away. It was trigeminal neuralgia for 3 days then it went away for 3 days then I was hit with extreme fatigue for 3 days where I had to sleep. I developed jumpy jerky arms and legs but medication helped this.
I felt good for 2 1/2 months then again I had a mild flair of symptoms, they go away after a couple of days, feel ok for a couple of days then a new set of symptoms appear for a couple of days, these then dissappear for a couple of days then new symptoms appear again. They are definitely MS symptoms as Ive had them all before.
Has anyone else experienced this while on Copaxone? It is like I am going to get a full blown relapse but my body is fighting it off but not winning. Will the Copaxone eventually stop this the longer I take it? Thanks Heather

[DianeD]

Uncertain

I too have questioned this with Copaxone. I have been on it for 18 mos. and I've felt worse in those months and experienced more problems than prior to it.

The thing is how do we know. Would we feel this bad minus the C? If only this were easy to figure out. I just know I have symptoms I didn't have before and I feel terrible.

I didn't take a DMD for most of the years I've had my dx (17 yrs) and only agreed when my neuro felt my MRI showed significant changes.

I don't really understand how they measure what C is doing; is it really helping??? Not in my case so far as I can see.

Once you start a DMD you are in a 'situation'. Will you stop it and feel better or worse?

Suddenly there is the fear of stopping and getting worse. You won't know really if you'd have felt the same after takikng it.

I wonder ...is there a study of those who took C long term that actually can show benefits?

Diane

[Heather1987]

Hi Diane
It is hard to know how we would be without the copaxone. I can only say for me prior to taking it, every 3-4 months I hit a wall, and had a really bad relapse. With the copaxone it seems Im hitting the wall but im coming out of it quicker but then another residual flairs up, but again not for long like before. Im guessing this is good, but at the same time tiring. Im just hoping the longer I take it the less I will feel like this.
The fact you have been on it for 18 months, I would begin to wonder if it is working. Good luck with it. Heather

[MyGirlsMom]

Diane, I too wish I could tell Heather the answer as I feel just like you! I have been on Copaxone for just over two years. When I was dxd I went right on the drug. However, I have had MS for years (the dx answered many questions) but have not felt as bad as I have felt these past two years. I have better days, but I don't think I will ever feel well again.

I am considering Ty but afraid of ending up worse due to a PML. My girls are still young and want to be active...but it continues to get harder and harder.

I have considered going off C for two weeks to see if I feel differently....but I would hate the build up again to not have three inch welts!

[billiejeane]

Ive been on Copaxone for 5 months now and 2 months in had a mild flair of symptoms then it went away. It was trigeminal neuralgia for 3 days then it went away for 3 days then I was hit with extreme fatigue for 3 days where I had to sleep. I developed jumpy jerky arms and legs but medication helped this.
I felt good for 2 1/2 months then again I had a mild flair of symptoms, they go away after a couple of days, feel ok for a couple of days then a new set of symptoms appear for a couple of days, these then dissappear for a couple of days then new symptoms appear again. They are definitely MS symptoms as Ive had them all before.
Has anyone else experienced this while on Copaxone? It is like I am going to get a full blown relapse but my body is fighting it off but not winning. Will the Copaxone eventually stop this the longer I take it? Thanks Heather

Yes! Ive been on it for 2 years and i felt sicker,thats y i always say,i have rrms,where is the remision part?????? i sooooooooooo know what u mean. and i told my neuro and she said it wasnt the copaxone and i shouldnt feel this bad,so she ordered blood wrk and nw i have to see a rheumy for high ana thats speckled and high rh factor. but i go thru the sammmmmmmmmmmme thing u do.

[billiejeane]

Diane, I too wish I could tell Heather the answer as I feel just like you! I have been on Copaxone for just over two years. When I was dxd I went right on the drug. However, I have had MS for years (the dx answered many questions) but have not felt as bad as I have felt these past two years. I have better days, but I don't think I will ever feel well again.

I am considering Ty but afraid of ending up worse due to a PML. My girls are still young and want to be active...but it continues to get harder and harder.

I have considered going off C for two weeks to see if I feel differently....but I would hate the build up again to not have three inch welts!

I hve been on for 2 years,felt worse,went off for 2 weeks,felt great at first than kinda felt a flare or worsening of sx's. this is y i say this crap may be no different than crack cuz onc u start it,its hard to stop. and btw,ive never done crack,but u know what i mean.