Re: Multiple Sclerosis

Originally Posted by kmrmom42

I will be interseted to hear how things go for you on the oral agent. I have only used Betaseron and since I recently had a relapse I am guessing they may want to discuss putting me back on something at my next appointment. Oral sounds good to me! I hated Betaseron. It was SQ every other day and made me feel like I had the flu every other day. I put up with that for 3 years before I told me doc that I was going to stop, with or without his blessing! Sheesh, nurses can be a pain as patient's can't they?!!

Hey Karen,
Have you considered Copaxone? Many people, not all of course, have virtually no side effects from it other than mild site reactions. Sadly like all of them whether or not they work or the disease is just remitting is the million dollar question.

Hang in there, Jules

Re: Multiple Sclerosis

Originally Posted by Jules A

Hey Karen,
Have you considered Copaxone? Many people, not all of course, have virtually no side effects from it other than mild site reactions. Sadly like all of them whether or not they work or the disease is just remitting is the million dollar question.

Hang in there, Jules

While this may be true for most?......I got golf ball size hard lumps under my skin. Even when I stopped the med it took about a month for them to go away.

Re: Multiple Sclerosis

Originally Posted by kmrmom42

Maybe we can go back to communal living like the 60s and 70s! We can have a divorced, disabled, nurses commune!!

Now that got me giggling. I think the smoking emoticon did it! LOL Love your sense of humor.
I have nothing to add about retirement planning etc but I just wanted to say you are a gutsy lady and I admire you.
I wish you all wonderful happy things.

Re: Multiple Sclerosis

WOW...I'm so glad I found this thread. I've been an RN for a year and a half. I was diagnosed at 21, after my first semester of nursing school. I stuck with it, having flares at each semester final's time. I am now 26, taking Rebif, and have not had a flare in over a year. I'll have my Bachelor's in May 2008, and will continue to earn my Masters in Nursing Education. I work at an LTAC hospital, which is pretty physically demanding, until I was promoted to charge nurse....it's much easier on my body. No one I work with knows I have MS. I know I won't be able to do bedside nursing forever; and that's why I'm continuing my education now, while my MS is not giving me many problems.

Re: Multiple Sclerosis

Originally Posted by tcdtx

I know I won't be able to do bedside nursing forever; and that's why I'm continuing my education now, while my MS is not giving me many problems.

Smart thinking! Hope for the best but plan for the worst is my motto. The beauty of nursing is that there is so much flexibility with what we can do and scheduling. Best to you, Jules

Re: Multiple Sclerosis

I'm new to this board and haven't learned how to navigate yet. I know I'm in the wrong thread, but I can't seem to find the one I am searching. This is a response to a poster in Wyoming who was asking about Tysabri. I've been on it for about a year- since it was reintroduced to the market- and it's much better for me than betaseron, copaxone, or rebiff. I'm still struggling, but the treatment has been much less onerous for me than the others. No bad effects that I'm aware of- don't be afraid.
June1925

Re: Multiple Sclerosis

June1925,

Can you explain more about why you feel that Tysabri is better than Copaxone?
I am considering Copaxone over Tysabri because of the following concerns:
Apparently Tysabri is associated with neutralizing antibodies (proteins produced by the body that may decrease the effectiveness of therapy)
Also, it may increase fatigue/malaise
and it increases your chance of getting a rare brain infection that usually causes death or severe disability called progressive multifocal leukoencephalopathy (PML).

I don't see any of these side effects or possible consequences with Copaxone. I was on Betaseron for years and had the flu-like symptoms the whole time so I will not consider any of the other interferons (Avonex, Rebif) so I pretty much decided on Copaxone.

I look forward to your reply.
Karen

Re: Multiple Sclerosis

JulesA,
Just went to the neuro yesterday and we are considering Copaxone but he wants me to research the other therapies as well. I am concerned about djmart's comment about "golf-ball sized" lumps. OUCH!

Re: Multiple Sclerosis

Originally Posted by kmrmom42

JulesA,
Just went to the neuro yesterday and we are considering Copaxone but he wants me to research the other therapies as well. I am concerned about djmart's comment about "golf-ball sized" lumps. OUCH!

Like with any of these therapies some people get side effects and some don't so its kind of trial and error, sigh. From what I've read Shared Solutions does down play the local reactions a bit although it also seems that what bothers one person isn't a huge deal to the next person. I know of someone that quit taking it and now is on nothing because it was giving her some dents. Dents to me, while not a plus, wouldn't be a deal breaker when I think of the things progression could cause.

I think your neuro is giving you great advice about researching all the options and the good thing is that you can always switch again.

For the poster that asked about Tysabri my two cents is that if someone is progressing rapidly I would definitely head right for Ty. It has shown, imo, slight improvement over the ABCRs but for someone who is stable right now I'd be inclined to stick with one of the meds that has more long term data with regard to side effects and efficacy. Just my two cents though.

Re: Multiple Sclerosis

Hi-
I'm not sure if this is the right way to post or not, but I will try to respond to your questions and hope for the best.

I've heard of the antibody issue, but hane had no problems as yet in that regard. My infusion nurse has remarked to me that none of her patients have experienced those problems yet either after I asked, but admittedly it's still early in the drug's uptake, so anything could still happen.
I feel sleepy after my infusion, but that seems to be gone later in the day. It certainly hasn't been an issue that affects my quality of life. I didn't do well on Copaxone- and I tried for a year. I hated the daily shots, and felt pretty crummy generally. Aditionally, my MS worsened symptomatically in the year I was on it, although my MRI was essentially unchanged.
Betaseron and Rebiff were even worse. When I took the full dose, I could barely move. It was awful.
About PML. To my knowledge, PML has only developed with Tysabri patients WHEN they have used it in conjunction with another drug (the one I'm familiar with is Avonex.) To my knowledge, there has been NO PML in monotherapy. Again, it is still early in the drug's uptake, but that's what I know.
FYI, I have also been on Novantrone, so I've sort of been around the block with MS meds. Novantrone helped my MS, but hurt my heart. Also, FYI, I am a very small shareholder in Elan, one of the companies that owns and markets Tysabri. I bought the stock because I believe in the drug( not the other way around,) but I thought I should mention that in the spirit of full disclosure.
For me this drug has been a godsend. I'll stay on it for as long as I can and not look back.
Hope this helps.
June1925