Multiple Sclerosis (MS) Support Group

I am just getting ready to start Copaxone. I chose it for a couple of reasons. I liked the fact that it does not cause flu symptoms and according to my Nurologist it is easier on your body. They have to monitor you (blood samples) on several of the other injectables and Copaxone is not known to cause kidney or liver damage.

The main reason I chose Copaxone is because it is the only Class B drug available to MS patients and is not known to cause birth defects should I accidentally become pregnant while taking it. Since I am of child bearing age and hope to have kids in a couple of years, this was very important to me.

I am not crazy about the daily shots but I felt that Copaxone was the best choice for me and what I want in the future.

If you are just newly diagnosed with MS, there
is an option besides the typical steroid route.
This low cost drug called low dose naltrexone
involves no needles & few if any side effects.

Studies have show that it should keep MS from progressing. Online check ldninfo.org for info written bt a neuro.

Has kept my MS stable with some symptom
improvements over the last five years.
I do many other alternative things & plan to take LDN forever.

I was started on Betaseron the beginning of September. I had relapsed 4 times in just over a month. At first I was also put on a course of steroids but they didn't work. I was then put on plasmaforesis and its was like a miracle. Within two days of the five day treatment I was no longer slurring, and I went from being confined to a wheelchair to using a cane to get around. Two days after the plasma exchange was done, I relapsed again and was put on steroids once again.

During the time I was on my second course of steroids I was put on Betaseron and haven't relapsed yet. Now I'm almost completely back to normal. The only side effect I have with betaseron are red spots at the injection sites. I never had any flu symptoms.

I have been on Avonex, Rebif and Copaxone. I would choose Avonex. It's once a week, and no site reaction stuff. For the flu sides, take advil or something 1/2 before injection and at nite take 8 hour tylenol, something to get you through the nite. The flu sides usually get better after being on it for several months. Good luck with your choice.

Lauri

I had started with Copaxone. I did not care for it - injection site reactions that were at times very painful and also I got the lovely lipoatrophy (I think this is not all that common. I then went to Betaseron and have been on that for about 6 months. I was a bit leery at first because of the possible flu like symptoms and that Betaseron does not come pre-mixed. But I dont mind it anymore and like it much better than Copaxone. Best of luck to you...I know its a difficult choice. The one thing is that if something does not work for you, then you can try something different. :O)

Hi CarmCo,
I also had numbness in my feet, and still have it in one hand. "Blocks of wood" is an accurate description of how I felt in my feet and legs as well.
I was eventually diagnosed this year but have had symptoms for 12 years or more. I was put on Betaseron, and titrated up to the full dose. I never had any flu like symptoms, nor any site reactions. I had to learn how to inject in awkward places but am able to do so now with less difficulty with the autoinjector.
After a couple of months things did improve for me. A nurse had come over to instruct me on the injecting. They keep in touch monthly for 6 months and check in still and there is a telephone help line too. I have found that every other day is not too bad and mixing the stuff is something I am able to do. Betaseron does not need to be refrigerated which is something to consider. Also, Betaseron claims, and I believe, has the "thinnest needle" of the MS injectables with a 29 guage I recall. It is not so bad as I imagined and did really help me. I hope you will get the information you need to make an informed choice, and that your condition will improve so you'll feel better.
This site has been a helpful comfort as well. The oral LDN may well help you instead of an injectable-it works for many.
Good luck to you.

Hi, and thx for sharing. I was diagnosed in march and chose copaxone for a couple of reasons. I wanted to keep my lifestyle as much as possible (no flu symptoms but it looks like they are managable) and I was told and read data that it does slow progression. I liked the daily routine. I got used to it, and dealt with the odd site reaction.

Good luck with your choice!

Darling, I've been doing the MS gig for over 23 years. When I was dx, the only treatment WAS Betaseron for which I had to go into a lottery to get. Did Betaseron over 8 years with open sores that took forever the heal on my body (the flu like stuff really only stuck around the first month). When I finally gave a thigh shot in with Betaseron started eating the tissue under my skin, I had a 6 day stay in the hospital to clean that out and ENOUGH OF THAT CRAP FOR ME!

I went treatment-less for 3 yrs. then finally decided to start Copaxone when my MS was progressing too much. I've been on Copax for over a year AND I LOVE IT!!! I believe that it is responsible for ending the neuropathy in my feet (very painful to walk even though I did anyway), and I really don't have much in site reactions, just a bump and a little tenderness and sometimes itchy... Nothing compared to Betaseron.

You are lucky to have so many choices in therapy, and since everyone is different, what works for some may not work for you. As far as the numbness, I've been numb since the very beginning, and you just get used to it. Means I can wear long earrings and they never bother me! (Yes, there are some advantages...LOL) All in all, I feel at peace with the MS which is not going to kill me like Muscular Dystrophy did to my brother, Billy, in 1989 at the ripe old age of nearly 22. Billy lived half his life in a wheelchair and the last year on a ventilator so I've always felt blessed that all I have to deal with is MS and a simple daily shot.

Good luck with your choice and know that you can switch to something else if the sides are too much or it's not working for you. The MS World has changed greatly since my dx for which you are quite lucky!!! xoxoxo Cj (Cindyjo)

ABC & you work ouyt every day. Good for you. I started about 12 years before dx. DX in 88. Still work oit. The life cycle will help you walk much longer. I am on the SWANK MS diet. You can find this on the internet.

MS problems often come and go. You are making good choices with your MD. I no longer take any of the ABC R drugs. I really advoid fat and dairy.

My wife I met in China and she always tells me "go slow go easy". I think this is good advise. Take care, Hometr

Hey Carm. My body had the same numbness started at my feet then traveled up my legs chest, arms , hands all in a 6 month period. Went away except my feet. Another year passed b4 I had the nerve to go see a neuro because another weird thing showed up. Had iv steroids for 2 weeks then rebif...I take it at night w/ asprin and felt good. I don't need the asprin now. doesn't seem to bother me. I still take it b4 i go to bed. I DO HATE needles...can't wait for a pill or inhailer....It helps w/ most symptoms...still have wierd stuff now and then but nothing I can't deal with. Good luck, Pat