[dmplaura]

Copaxone.

I've had enough. Not even 1 year. I did a lot of thinking about my situation, and did a lot of talking to those around me, including my family.

I've been eating a low fat diet since last July (think Swank diet, only not as hard core, but close enough), sleeping well, exercising, quit smoking... my MS symptoms are mild. As of March 5 this year, it's my 1 year anniversary of being diagnosed, but it's also my suspected 6th year of living with this disease. My neuro hinted that 5 years was a conservative estimate at diagnosis time.

In any event... I suffer from pretty atypical MS symptoms, and they're sensory. Mostly headache, and this burning mouth crud. Has either improved? No. Are they controlled? Yes, not satisfactorily if you ask me, but we're working with what we have (pain specialist with his 2-3 year wait is out of the question at this time).

Anyways, this is about Copaxone. I had to take an arms vacation. After not missing but 1 shot since May 10, 2008. I can't not inject into muscles on my arms apparently, as we discussed. I tried the 45 degree angle on my thigh injecting, and ended up with an enormous bump/welt. I injected as I always have on my other thigh, and was virtually unable to walk on that leg for 5-6 hours, and in terrible pain.

In a 2 week span, my body literally, in various ways, be it unable to use limb or huge white welts, began just overall rejecting this drug.

Do I think Copaxone has helped me personally? I'll be honest.

No.

Do I think my diet changes, exercise and quitting smoking, among other lifestyle changes, have been keeping me in remission, save for the headaches (which have plagued me since the dawn of time)?

Yes.

So my tearful mother yesterday said, "Laura, are you honestly going to finish that box of needles?". I sat in silence for a bit, and then I said, "No, I'm not". I had fully intended to. But when your own mother is almost crying on the other end of the phone, you definitely rethink the value of 20 more agonizing shots.

So that's my update. I'm still eating well, have not missed 1 day of exercise since Jan 1 (and I was exercising well before that), doing well at work and overall I'm happy . Even with the headaches and burning mouth pain. I can't expect to be 100% symptom free with MS. I'm realistic

[Judy2]

Can't say that I blame you, DM. After having horrible side effects from betaseron some years ago, I just couldn't make myself inject another shot. Have you considered LDN? It's just a pill to swallow. Good luck with whatever you choose to do!

[mom2five]

Laura, I appreciate your honesty. I echo the suggestion...have you looked into LDN? It's a medication that I can actually tell a difference with...and the best part of all: NO SIDE EFFECTS

Best of luck to you, and congratulations on taking control of your own health.

[Lady]

Hi Laura,
I can empathize with you. Between both the Avonex weekly darts and then the Copaxone daily shots, I felt like I had so many holes in me if I drank water I could be the lawn sprinkler.

Seriously, I know the site reactions are not pleasant at all. I think a sadist decided MS treatments should be with either needles or infusions.

Laura, I don't know your history, or what you first exacerbation was, that led you to a dx. You have to make the decision (with Mom is good) about taking a break from Copaxone, for just now or forever. It is your body, you have to be in charge of what goes into it and how you feel.

It sounds like you made the decision to stop the "C" already. I hope you feel better and the welts go down.

Exercises is the best thing you can do for yourself. My first MS Specialist wrote a small fact sheet about the benefits of exercise and passed them out. He even did a video on Health-talk about it years ago.

[sabimax]

Hey sweety,

You are taking control of what YOU need to do, and that is a strong person, maybe eventually you can talk to dr about another dmd,(is that what they are called) or the LDN idea might be well to look into. HOping some day they come up with these meds orally.

The best thing you are doing for that healthy body is the exercise and eating well WOW, I gotta get strong enough to do those both better HUGSSSS

Talk to your neuro next visit, let him know how you feel and what you want, see what he says too, you are strong keep up the good work hugsss,sarah

[laurasari]

Ican totally understand what you are saying. I had welts from Copaxone but they went away in time and no other sideeffects. I personally liked it better than my Rebif. I used copaxone for almost 4 years but then it quit. the Rebif made me sick burned likr the dickens and I still have indents in my skin but I stuck it out till now.I am on Tysabri because the Rebif quit. All the drugs affect diffrent people in diffrnt ways all I am suggesting is you discuss this with your Dr maybe for you one of the other drugs would be better. Many love one AND hate the other. For me I did not realize how miserable I felt with the Rebif untill after I quit. I did not have a down day.

Good luck whatever decision you make but pleaselet your Dr know

Laurie f

[Twinkletoes]

I don't blame you one bit. That's the decision I made exactly one year ago. Was on Copaxone faithfully for 9.5 months, but it just made my body so slow and achy.

I've been on LDN since August. The numbness has continued to creep slowly up my right arm, but I've always thought I had more stamina on LDN.

Sorry for your headaches. Ugh.

Isn't it nice to have a mother who loves and cares about you?

[bombi]

Hey Laura, you tried and you made every effort to deal with Copaxone. So will you try another DMD? You probably made the right decision. Keep up your healthy life style, take a break then make a plan.
C gets me down every so often, sometimes the pain or the site reaction just makes me want to say WTF am I doing this for. There a few new drugs in the pipeline expected to be out soon so there is hope that something better is on the horizon.

[SallyC]

I totally understand, Laura. Especially if you don't even feel that it is helping you.

Go forward for awhile with your attitude exercise and diet and see how it goes. You can always get back on one of the other DMDs, if you think it could help.

Yes, LDN may be worth a try for you.

[lady_express_44]

Have you considered giving the interferon's a shot (pardon the pun), Laura?

You know that Copaxone isn't for you, but you may do ok on Rebif, Avonex, or Betaseron. I know the MS seems stable and not aggressive at this time, but that could be partially attributed to Copaxone too. The shots may hurt, but it could be working too ...

If you decide to go off all of them for now though, I would agree that it would be worthwhile to try LDN. You have nothing to lose and lots to gain (potentially).

Cherie