MS Newbie Needs Advice on the Disease Modifying Drugs

[RunninGirl]

Hi everyone.

I'm new to the MS world. I had an appointment with an MS specialist on Friday, who said that though she can't officially diagnose me, that she's "virtually certain" that I have MS. She is starting me on 3 days of IV solumedrol after the holiday weekend, and has advised me that the disease modifying drugs are something I need to consider.

I was given a whole library, it seems, on the drugs, and have been trying to weigh the pros and cons of them all.

I wanted advice from those who try to remain active as to what medication you take, if any. I'm a bit afraid of the "flu-like" side effects of the interferon medications, but am confused if Copaxone is as effective as the interferon drugs.

Any advice?

[KristaH]

hey there! Welcome to our world haha.
I found Copaxone the easiest to take and to integrate into my nightly routine. Avonex was a little scary but only once a week, and the flu like symptoms were pretty bad, but if you take a painkiller before, and the next afternoon, the shot it isn't so bad. I also found taking a warm/hot bath before helped relax me and the muscles making the needle easier to go in. Rebif side effects were less flu like for me, I would just get a slight headache that Ibuprofen would take care of. Taking it only three days a week was pretty easy too. I did it Mon, Wed, and Fri. It like Copaxone is subQ which is just under the skin, I used the autoject for both and had few problems, I had to stop giving the shot in my thighs and backs of the hips because it would make my legs spasm. Other than nerve problems that had nothing to do with the shots themselves I had no problems
All the drugs have their pros and cons. I'm not taking any of them anymore because they didn't work for me, meaning I got more lesions and a lot more relapses while taking them and their purpose is to stall those things. In a few weeks I'll be starting Tysabri so I'll be able to tell you about that too haha.
All the drugs work differently for everyone so its possible that you have different experiences with the one you choose.

[Lucia]

You may want to browse through or post your question on this other site http://www.msworld.org. The above site has some pretty extenstive information besides having a heavier traffic volume. just click on the message board tab which is on the extreme top right hand corner of the site to view the different boards.

Nevertheless, KristaH did give you a great thumbmail view of most of the popular DMD's (Copaxone, Avonex and Rebif).

As for me, I've been on Rebif for close to 8 eight years. It has done well by me and has kept me active. It kept me working until I could retire with full benefits from my job, six years later. Even in retirement I still work at a part-time job and recently started (2-3 months) to use my bike to commute the 21/2 miles to my job.

However, every dmd affects folks differently. They also have their side effects but most are manageable.

Rebif gives me flu like symptons but one advil taken immediately after I inject (and I use the autoinjector) works for me.

Other side effects may involve your liver and thyroid. Again with me, Rebif affected my thyroid. I developed hypothyroidism. However an oral medication is keeping that side effect under control.

You mentioned that you were given literature on the dmd's. I know it seems overwhelming but you need to read through it, as best you can.

However, sites like this one and the one I've linked above are also good sources of information. They connect you to other MS folk who have had practical experience with certain dmd's.

But keep in mind that dmd's, like MS, can affect people differently. It's a bit of a crap shoot really but, as far as I'm concerned, it's a risk worth taking.

[Marinadca]

Its all so much personal choice. For me it came down to a decision of whether I'd rather take a shot every day or have the flu symptoms.

Personally I am very much knocked out by flu like symptoms, I knew that for me they would knock me out completely. So I chose the copaxone, which is daily.

Copaxone is not without issues. I have ugly, itchy, bruised, and swollen site reactions. It stinks to take it every day. But the side effects pretty much stop at the site reactions.

Good luck with your decisions!

[RunninGirl]

Thanks you guys for the advice. I filled out the forms for Avonex, and got the blood test done for it, so now I guess we're just waiting for the insurance to approve it. I hope it works out for me. If it doesn't agree with me I think the Copaxone will be my next choice.

[August]

Running girl. I came to the same conclusion. It seems that Copaxone and Avonex are the two logical first choices.

one thing about avonex is that you will have flu symptoms the day you take the shot and you may feel horrible the next day as well. But it gets better with time.

[ActiveMSers]

I'll repeat what August said, it gets better with time when it comes to the interferons and Copaxone. The first couple of months will be tricky symptom-wise and you might screw up a shot or two. No biggie. Just remind yourself that these drugs are helping you stay active...

[Lucia]

Running girl. I came to the same conclusion. It seems that Copaxone and Avonex are the two logical first choices.

one thing about avonex is that you will have flu symptoms the day you take the shot and you may feel horrible the next day as well. But it gets better with time.

That's funny but when I was choosing a DMD, I didn't think C or A logical choices - for me.

But, in the end, we can only talk about what is logical for you and not for someone else.

From where I sit all lthe DMD's have side effects. The flu-like sxs that most people seem to worry about the most is a possibility with most of the DMDs.

In the end, what's most important is adherence. If you feel that you can adhere to A or C then that's half the battle.