Why bother?

[Tomjadg]

I am 6 months into taking Rebif, and I have seen a steady decrease in my legs.
They are getting "looser", and any kind of exertion makes them weak and "rubbery". Walking is a chore, and I can't walk long or stay on my feet long.

There has never been any kind of improvement, which leads me to think I have progressive MS. I see the Neuro this month for my second follow up, and I think I am going to tell him I am going to quit the shots.
Why bother?

I am just tired of all of this.

Don't leave and keep trying

Your post is sad. I noticed others on here each have their own favorite medication and there are lots of them....perhaps you should try something els.

[heliotrope]

Don't give up... I was in the same boat one month into Betaseron. Was losing ground every day. My neuro took me off... It's soooooooooooooooo much better. I limp, yes, but I can walk. It's likely a med.

[Redwings]

Hi Tomjadg:
Stopping Rebif still leaves you with other options. Have you considered Tysabri or Gilenya? If you're willing to take on increased risk, there might be increased benefits for you (the least of which is no more shots). Considering your progression, it's worth asking your neurologist if either one of them is appropriate for you instead of one of the other CRABs.

[kellygrn]

There is more than one med

I was allergic to interferon so that knocked out 3 of the injectables. So try one of the others. I've had MS for ever. It will be OK.

KK

[journeyman]

Rebif

I have been on Rebif for two years. I coudn't get off of the couch for a year. Then I was encouraged to use a cane. Because of my pride I wouldn't do it. Finally I gave in and did it. I even got a handicapped tag. After all of that I am doing better and am using the cane less. I only use it for long distences like the grocery store.

Honestly am doing better and and am doing better. Its slow and tedious but you will be better.
Dave
J. Tampa, Florida

[Red7172]

I know exactly what you are saying just yesterday I saw my neuro and I told him the same thing. (that I didn't feel my copaxone was working any more)
He actually understood and talked with me about everything and he let me make the decision. (I do mean he talked with me not at me) I am still going to take the copaxone but if I did not get to have the conversation with him I don't think I would still be taking it. I think if you can talk with your doc it would be helpful. But no matter what it is your decision on what you want to do.
Remember there is a few more DMD. Some people have gone through most of them before they find what works well for them.

[JudySz]

I just had another argument with dh this am about rebif. I have no bad reactions, but I feel the same way. I am shelling out $300 a month to not feel better. I stopped once and I felt okay, went to neuro and was encouraged to stay on Rebif. went back on but want to stop again. well, i did for a few weeks....had to wait for paycheck to pay for them and i feel better, walking better etc. Not as tired...and I NEED THIS WITH cHRISTMAS AROUND THE CORNER. OOps sorry for caps...Last time I was at neuro I asked sinc they told me I had Progressive why I was taking a medicine that had no proven benefits. They told me MRI is good, no changes so to stay on it. I am going back in Dec., and I think I may stop at that time. Plus it will cost me 2500 in Jan cause of deductible. We make too much money for rebif programs.

Good luck with your desicion but I totally understand your questions .

JudySz

[Sir-Voor]

Don’t quit, SWITCH!

Rebif gave my fuel like symptoms and being heat sensitive and not knowing what was happening at the time had me believing that progressing fast and I would soon need to go on disability.

Why Bother?
Well that depends on what you mean, if it why bother with the shots. I say bother your doctor for a switch, I recommend trying Copaxone.
If you mean why bother fighting MS, there are several reasons.
Because you can win!

I know for a fact changing and/or new drugs can improve your quality of life.
I know for a fact new drugs are being tested and have the possibility of improving quality of life for MSers.
I know for a fact that in my heavenly life that will follow this one, I want to know that I never gave up.
I know for a fact that with Copaxone, Ampyra, diet and sinus surgery I have gotten my life back, and different combo of things will help you get your life back.

[Tomjadg]

Thanks for everyones input.
I will probably look at alternatives with the Neuro.

[smacko]

Why bother?

I have been on Rebif for awhile but like everyone else has sais don't give up there are other drugs. What we need to remember is everyone is different and so is our MS. Biggest thing to remember is that the drugs aren't a cure. They are to try and slow it down or keep it stable.