haven't felt better since starting copaxone?

[pitlover91]

Hello all, before I was diagnosed I would have symptoms come and go rarely lasting a week and I would feel normal for months. Ever since I was diagnosed and started copaxone 40mg three times a week I haven't been able to feel normal again. Almost like if my symptoms have been turned up a notch especially my dizzy/vertigo spells(yes I feel both and can feel the difference! Sucks!) Have any of you experienced something like that before? I've been on copaxone for 7 months and I still remember when I was still able to return to normal..I miss it!

[matula]

Hello pitlover91,

I'm exactly in the same situation as you !
I'm on Copaxone for 8 months and I'm everyday dizzy and weak (also a cold river flows on my legs...)! I really think Copaxone makes me feel a lot worse than without !
I'm will ask my neuro to switch...

[Cat Mom]

Did you used to be on COpaxone 20mg x 7 days or is this your first med?
Jen

[matula]

I take 20mg x 7 and it's my first treatment. Why this question cat mom ?

[Cat Mom]

I take 20mg x 7 and it's my first treatment. Why this question cat mom ?

Just curious to see if the original poster had success with 20mg x 7 days and then switched.

Someone here pointed out that 40mg x 3 days results in 120mg per week vs 20mg x 7 days, which results in 140mg per week. Not sure if that 20mg less makes a difference.

It's not available in Canada but I've had success with the good old dose, been on it for over 7 years.
Jen

[pitlover91]

Cat mom this is my first DMD and I've only taken the 40 mg x3.

[Jules A]

Also worth noting Copaxone really isn't supposed to make us feel better. It is my understanding we are hoping it will delay progression.

That said if someone feels the are actually having worse symptoms whether due to an adverse reaction to the Copaxone or possibly progression discussing a change with your neuro definitely makes sense.

[its2much]

Jules A That's

my understanding also.

[pitlover91]

Also worth noting Copaxone really isn't supposed to make us feel better. It is my understanding we are hoping it will delay progression.

That said if someone feels the are actually having worse symptoms whether due to an adverse reaction to the Copaxone or possibly progression discussing a change with your neuro definitely makes sense.

Yes you are correct, copaxone isn't for symptomatic treatment. But when lookingnat the side effects anxiety is one of them. So can it make the anxiety we already worse since its a side effect? Just hard to tell if its the copaxone or anxiety is getting worse on its own.

When people switch after being on DMD for a long time can you through withdrawal ?

[ElliotB]

Actually Copaxone is designed to reduce the frequency of relapses and nothing else. It typically takes 6 months or more to start working. Some people do report help with symptoms although this is not typical - I had a specific minor symptom stop within 48 hours of starting Copaxone. I don't believe there is any evidence that Copaxone stops the progression of MS, sadly. But on the other hand, there is no way of knowing for sure.

[Imagine]

Actually Copaxone is designed to reduce the frequency of relapses and nothing else. It typically takes 6 months or more to start working. Some people do report help with symptoms although this is not typical - I had a specific minor symptom stop within 48 hours of starting Copaxone. I don't believe there is any evidence that Copaxone stops the progression of MS, sadly. But on the other hand, there is no way of knowing for sure.

[B]AS I UNDERSTAND, IT TAKES 7-8 MONTHS TO NOTICE A DIFFERENCE. AFTER 7 MONTHS, MY SYMPTOMS: HORRIFIC ITCHING, BURNING, PAIN IN MY LEGS AND FINGERS... ALL GONE! FATIGUE IS STILL ROUGH AND, AT TIMES, CAN BE INCAPACITATING- I SIMPLY DO NOT COMMIT TO ANYTHING NOT IN THE HERE AND NOW ANYMORE . I AM SOOO GRATEFUL FOR THIS DRUG. ALTHOUGH THE FATIGUE IS ROUGH, THE OTHER SYMPTOMS HAD GOTTEN SO BAD, I COULD NOT THINK ABOUT THE FUTURE AS IT SCARED THE --LL OUT OF ME.

JUST AS THIS DISEASE IS DIFFERENT FOR EVERYONE, I THINK THE SAME HOLDS TRUE FOR THE DMD. MAKE SURE YOU HAVE A NEURO THAT YOU TRUST, AND TOGETHER YOU CAN FIND 1 THAT WORKS FOR YOU. HANG IN THERE. GOOD LUCK AND LET US KNOW HOW THINGS ARE GOING.
SHALOM, SUZANNE

[pitlover91]

What's the usual time frame you guys give a DMD and amount of mri's before you make decision that it is time to change?

[Lj426]

?

I saw an old post you had about dizziness and u was reading your comments looking for help with my own issues, so I don't know your story or what you have been dx with except it seemed maybe ms? Anyway I had to sign up for this site so I could reply to you.. Have you considered Lyme disease?!

[pitlover91]

I saw an old post you had about dizziness and u was reading your comments looking for help with my own issues, so I don't know your story or what you have been dx with except it seemed maybe ms? Anyway I had to sign up for this site so I could reply to you.. Have you considered Lyme disease?!

I was diagnosed with ms last year..I've had a full work up of all kinds of bloods tests for diseases that mimic ms including Lyme disease, and I've had 2 MRIs about to get a third one and I had a positive spinal tap.

[ElliotB]

"What's the usual time frame you guys give a DMD and amount of mri's before you make decision that it is time to change?"


I believe the criteria used by doctors is that two relapses in two years may be an indication the DMD you are on is not working. Your best bet is to ask your neurologist.