[offinthedistance]

Coming to the conclusion that Copaxone may well be causing my pain and after two years of it, I'm thinking about my options.
I have joint pain, neuro pain, bruised pain and a swirl of pain on top.
I'm on a whack load of pain killers and life has become quite miserable. It all happened bit by bit and sneaked in quietly so I hadn't realised how bad I'd become.

So I could take a break, see what happens, take my results to next neuro appt in a months time.
Look into avonex and rebif again.
Or take nothing.

My question is, if I had absolutely awful flu reactions to Betaseron, will the same thing happen with rebif and avonex? And with the once a week jab, even if I get the flu thing real bad (like I used to), it's only once a week right?

Any ideas?

[Jules A]

Stopping the Copaxone even for a while as a rule out for your pain would allow you to see if it is what is causing the pain however I'd definitely run it by your physician first. He/She knows your case and should have valuable insight to offer.

I can't speak specifically for the interferons but I would imagine as with other medications you would be more likely to have similar side effects however that isn't guaranteed. For example if one SSRI isn't well tolerated I might still try someone on another depending on the severity of the reaction.

You also make a good point about being able to deal with, and possibly pre-medicating, the flu-like side effects once a week if that is the case with another medication. Good luck!

[Dejibo]

it took a few months of being off C for my joint pain to back off, but within 2 weeks I KNEW I did the right thing by dropping that needle. Day by day I felt leaps and bounds better. I had struggled for the last year I was on it, and begged to be released. I finally had to tell the MD IM DONE!

I wish you the best of luck. I wrote you a PM

[mochagirl13]

I have a friend who swears by the C. But he has had some pain too. Talk to your doc. and make sure you find out where the pain is coming from. Best of luck trying to get this straightened out.

[Jules A]

Originally Posted by Dejibo

it took a few months of being off C for my joint pain to back off, but within 2 weeks I KNEW I did the right thing by dropping that needle. Day by day I felt leaps and bounds better. I had struggled for the last year I was on it, and begged to be released. I finally had to tell the MD IM DONE!

I wish you the best of luck. I wrote you a PM

Hi Dejibo, so your joint pain went away and didn't come back after you stopped Copaxone?

I get some also, not enough to consider changing my meds yet, but never thought it might be a side effect of Copaxone. I always just blamed it on over exercising, age or my favorite: MS...

I swear I'm going to have a MI or stroke one day and drop dead while cursing the thought of new MS symptoms.

[offinthedistance]

Thank you all for your opinions, and Dej, a HUGE thanks.

I'm pretty sure my pain is Copax related so day one off of it starts today. The MS nurse suggested the plan and I have a follow up in one months time. I can take my results to that appt...
No point 'asking for permission' from neuro; He doesn't even know me!

I'll take my chances. Thanks guys.

[lrryan]

I was only able to get through 8 days of Copaxone injections before I begin to have terrible injection site reactions, so I didn't get to the stage of other side effects. However, I tried LDN for almost a year and now that I've had 2 relapses since, I am going to try Gilenya. I am hopeful that it will help. Maybe that could be a choice for you.

Linda

[Mariel]

I didn't take Betaseron in the long ago when it was offered, knowing I was sensitive to many drugs, and reading the side effects on the box, which included severe depression.
But later I had terrible peripheral neuropathy pain when I tried Interferon Alpha for another disease. Had to quit.
So, I decided not to take drugs for MS 26 or so years ago (can no longer remember when i was diagnosed, exact date, as dx was made over some period of time). I immediately went on the Swank diet and i recommend you try it. I had the advantage of knowing personally a doctor with MS who had excellent results with it (she was a friend, not my physician). I know it helped because I would immediately lose some of my coordination when I got off it for two days, such as eating red meat for two days in a row. I know it may not help everyone.
If you do this diet, you need to really follow it, as if it were as important as taking a drug. You can't sort of do it, especially in the first year, Dr. Swank says. It sounds like a loss but there are so many good things you can eat and experiment with improving flavors without high fat. I got really expert at crock pot cooking, and my husband loved the meals. I know that cooking is difficult for some with MS--how I hate the cleanups.
However, even if you decide to take another drug you could read Swank's first book. It used to be available at any library.

[offinthedistance]

...after two days of NOT taking Copaxone, there is a definite improvement in my pain areas and frequency/duration and intensity of my pain.



Could it REALLY be so simple????????????????

Day three; bring it ON!

[Dejibo]

as each day passed by for me I felt better and better. I hope the same for you.