Does anyone feel their MS has got worse?

[SherryDP61]

Does anyone feel that their MS and symptoms have gotten worse since being on Cpopaxone? I honestly feel that I have gotten worse in the 21 months I have been on it. The dailiy pain I am in is begining to take its toll on me. So I wanted to see if anyone else felt this way.

[Loriyas]

Sherry
I have been on Copaxone for 7 years. In that time I have had one relapse. After the relapse (which I had to have IV steroids) I felt that I may be going down hill. It really scared me and I began researching to learn what else I could do to keep that from happening. After much research I decided I wanted to try the antibiotic protocol that I had read about here and elsewhere. So I began that protocol and have just begun my third year on it. I have not had another relapse (makes me nervous to say it out loud-don't want to jinx myself!) and I feel really good. I also continue with Copaxone

If you think Copaxone is not doing the job for you please learn all you can about all your other options. I think it is really important to be proactive in managing this disease.

Good luck!
Lori

[BELOU]

Sherry, what antibiotic treatment are you talking about, minocycline? I'm on Copaxone since 2009 and so far so good (my fingers are crossed hard). If it's minocycline that you're talking about I thought we were supposed to have the results by the end of year 2013 (phase III).

Belou

[Froggie]

Sherry,

When is the last time you had an MRI done? That is probably the best way to tell if it's being efficacious for you. I was on Copaxone for 9 months and experienced several relapses during that time. I went to see an MS specialist, who ordered a current MRI of the brain and C-Spine to see what the disease progression was. Unfortunately, I had higher lesion load than he would have liked and determined that I was a "non-optimal responder". It sounds like you may be in the same boat.

Once it was determined that I wasn't responding to the Copaxone, the specialist and I discussed other options and I was given a bunch of literature to read over to help me make a decision about an alternative treatment. I also did a lot of web research as well.

Hope this helps!

Christine

[Wonderfulworld]

Sherry is there any chance you could discuss the pain with your neurologist? They will be able to prescribe something to help you.

I suppose that I have got worse so to speak, certainly my nerve pain has got worse. But in 7 years on Copaxone I didn't expect it to make me better and I did anticipate that even on it I might deteriorate as it doesn't cure or even halt MS, it just slows your progression allegedly.

So if I compare how my relapses were off Copaxone (4 per year, severe) and on Copaxone (1 per year, mild) then for me, I want to stay on it. I don't think MRI's are considered any indication of MS - you can have one MS'er with hardly any lesions and a high level of disability, then study another person with MS and a high level of lesions and very little effect on their mobility (me, for example). For this reason, neurologists in IReland do not routinely order MRI's because they tell you very little about the disease course.

[nicko]

Although I haven't had a large attack while on copaxone Since I started in July. I've had a very slow progression on a number of things. Usually every two weeks something else gets slightly worse. Seems to me that i'm slipping to SP. Which is really depressing since i'm 29. I had 3 doses of mitoxantrone(chemo) along with copaxone. Which is suposed to be 90% effective in calming relapses. While it seemed to stop my relapses it hasn't stopped my progression. So i'm not sure whats the next step. I don't think i'm going to try tysabri, I took a risk of leukemia with mitoxantrone. Do I want to risk the chance of PML, ugghh.

Seems to me that theres a risk in everything. I might just pull some rrsp's and head to poland.

[Froggie]

Concussus,

That's very true that MRI's cannot predict the course of the disease. My neurologist made a similar point to yours about the number of lesions and the level of disability. I do think that it also depends on where said lesions are.

One of the treatment options the MS specialist gave me was to go the mitoxantrone as well and then go back on Copaxone. My neurologist here in town, however, recommended as he said, not to bring out the "big guns" yet (re: chemo, Tysabri) and try one of the Interferon drugs. We opted for Rebif and so far, I've been tolerating pretty well. I have not had the injection site reactions like I did on the Copaxone, though there are lovely flu-like symptoms as a side effect. I've discovered (as I'm sure you all have) it's a lot of trial and error! If one thing doesn't work, keep on trying until you find something that does.

Christine

[Quest56]

My MS has definitely progressed in the 12 years that I have been using Copaxone. This is no surprise to me as nothing I have ever read suggests that using it will stop progression. I have been classed as having SPMS since at least year 2000.

[agate]

Message deleted

[Wonderfulworld]

Hi Christine
you said

I do think that it also depends on where said lesions are.

I just don't know about this - I have been described as being covered in lesions on my left side of the brain, and that was 10 years ago. The neuro said there were far too many to even count.
Last year I had another MRI for neck pain and again, the report said that I spinal cord lesions. Yet very few things have deteriorated. I can still walk up to 5 kms without a break. Fatigue is very bad, but that seems to have remained about the same for the last decade.
I just don't know anymore. Maybe Copaxone is a great big placebo.....who knows?

[Froggie]

Hi Concussus,

Glad to hear that few things have deteriorated. I've got a plethora of lesions on my cerebellum and brain stem, which could affect things like breathing. I did have trouble exhaling during a relapse last year, but thankfully, it went away. At that time, the Copaxone may have kept things from getting worse, though it wasn't efficacious for me in the long run.

I'm trying to get back into some sort of exercise, though it's been a difficult journey. Before my diagnosis last year, I was walking three miles a day. I used to be very athletic- swimming, kickboxing and yoga among other things. I hate being this out of shape! I am, however, doing physical therapy right now as a start. I'm re-learning to walk, as I've spent so much time watching my feet to avoid tripping and stumbling that it's become unnatural. I would just like to walk around without having to be so focused on it! A little stamina would help too. Gotta love that fatigue!

Christine

[Wonderfulworld]

Hi Christine
I bet you will get there. A persistant nature goes well with MS.

Before my diagnosis last year, I was walking three miles a day. I used to be very athletic- swimming, kickboxing and yoga among other things. I hate being this out of shape!

. Do not despair. Before my diagnosis nearly 12 years ago I did Aikido, cycling, swimming, running.........but now today I had a really good day and did a short cycle. I suppose you have to adjust your expectations, but if you'd told me 12 years ago I'd still be cycling occasionally and walking fine, I would have been thrilled. I'm out of shape too but I've learned to forgive myself for not being brilliant at everything

[eveable]

I was dx in 2002 and went on Copaxone in 2003. It was not my decision to wait a year, the first neuro I saw would not prescribe it for me. I had to wait a year to see another neuro and get on it. In that year I progressed from a 1.5 to a 3. I am still on Copaxone, 7 years later and am now a 2.
However, we are all different.

[snowbound]

yes i have been on copaxone 12 months and definately have gotten worse no doubt about it. The only person who says that I havent got worse is the neuro and as far as i am concerned he is talking nonsence. he cannot feel what i feel and a ten minute exam once a year is nowhere near sufficient care or sufficient time to cast much of an opinion, Nobody seems to know how to help and I am sure I am having another relapse at moment, stabbing pain and spasms in ribs, searing head pain and eye pain like optic neuritis burred vision and increase fatigue. Take urine sample to doctor in morning and check for infection if not infection then call relapse clinic. relapses have not been as severe in past 12 months as pre cop-axone but I have counted 3 or 4 at least and because symptoms never pass i know it is spms even though neuro still says r/r. How can I know anymore?

[DericJ1982]

I just stopped taking Copaxone Aug 29. I have not been able to walk since on this drug. I suffered from flu like symptoms, stupor, and Depression. Since stopping this treatment I can almost walk like I did before my first exacerbation. When I tried doing more research on this drug I found many mental side effects I was never warned about. That was shocking enough, but to find out that Foot Drop is one of the side effects. I was very disappointed, and angry that no one bothered to tell me this. My MS still effects me, but now I have the Copaxone monkey off my back.

Here is the list of Side effects:
http://dailymed.nlm.nih.gov/dailymed/ar ... section-12

Why would they prescribe something to people who are suffering that makes them feel worse?