Community Discussion: How do you make the decision about whether or not to take the MS medications?

Oh my!  Did your doctor attribute the Avonex to your teeth problems?  I am sorry that happened to you.  I know a lot of folk are probably interested in hearing about Tsyabri.  If you would ever want to write a share post about your experience with this drug I am sure a lot of people would want to read about it.

Thank you so much for your comment.

Sure, I'd be happy to. I'll do it tomorrow....

Maggie

THANK YOU!!!

I'm so sorry...I have the flu and it is getting bad. I'll definitely do it, but I can't promise when. Once again, I apologize.

By the time I was dx I had been suffering sx for at least 20 years. During that time I had only done treatments of oriental systems that worked on the sx. I never even went to a regular MD.

When something went wrong in my rt eye and I went through about a year of severe anxiety I decided to check medically. The final dx took about a year , but was definite MS.

At that point I received the course of Solumedrol that most people get and my neuro (who already knew that I would do it) told me to do some research on the net and learn about treatments. I did and after a few more examinations he suggested I begin treatment with Copaxone.

Luckily here in Israel the med plans cover the whole cost, so I started on it. In the meantime I continued studying. Within less than 2 years I told him that I felt that my conditon was worsening so he suggested Betaferon. I've been taking that ever since 2001.

I do believe the Betaferon has slowed neurological progression, but not the progression of clinical sx. I sometimes get sick of having to think about injecting and that I have to schlepp my equipment with me when I travel over night and when I'm in  terrible pain and can hardly walk I think that the shots are a waste of time. Then I consider how much worse my situation might be without them. I don't think anyone knows.

Why take a chance? I guess my neuro and I agree about that.

Wishes for sx-free and pain-free days.

Peace & Serenity,

Maris in Israel

Hi Maris

You make some good points and observations.  From what I know of the drugs...they don't do anything about the symptoms you have now.  But rather, they hopefully will slow the progression of the disease.  Have your MRI's shown this to be true? 

I am glad we are having this candid and honest discussion.  I had wanted to get multiple perspectives on this issue so I do thank you for sharing your story here. 

Hi again Me,

My last 2 MRIs have shown that my brain mass is stable meaning that there is no brain atrophy. That's what my neuro is most concerned with. He also said a month ago that my EDSS hasn't changed. I don't know how he judges that by seeing me once in 4-6 months walking the 3 feet back and forth in his office. I FEEL the difference every day.

So be it. The point is being optimistic and positive about life in general. Then the glitches become less overpowering.

Feel good and have a beautiful day.

Maris

Larry these are really good questions.  I don't think anyone is going to know the answer unfortunately as all nobody can predict what will happen for each individual who has MS. 

I am going to be writing some follow up articles about the pros and cons of either choice...to wait or to take the meds and give you the research and information that I found. 

Stay tuned!

Hi Julie

This is such a complex issue and there are no right or wrong answers.  You hear so much about the benefits of taking these drugs and there is research to show that there are benefits yet....the other side needs to be expressed too that taking these meds are not without risks and/or the negatives. 

I am going to be presenting the two sides to this issue in my future posts. 

I am so glad people are being honest about their experiences so that we can achieve a more balanced view of things. 

Thank you so much for your comment.

Well I take Beta and have since 04.  Now do I feel  any difference no, I guess that is what I was look for.  But on my last MRI no new Leisons.  So I guess that was good.  Yes I still get the bruising somettimes, but if I did not get it from the shots, I would have them from falling.  Six one way half a dozen the other.  I guess if if slows the monster down, I should be thankful!  I am just waiting for that magic pill.  I guess I will continue to take the Beta shots, I was seriously thinking about stoping all medications, but if it helps just a little I guess I will continue.  My only regret with ms is that it took away my ability to walk, I can deal with the fatique, but my walking bothers me the most.  But our day will come, our pill will be invented one day, our illness will one day be a thing of the past.  So until then I guess I will continue to shoot up with Beta

Well...the no new lesions is a really good thing!  This decision is so hard for us but if you feel something is working then...it does make you think to keep going with it.

I am hoping for the magic pill too.  Maybe in our lifetime?  Is this so much to ask?  :>)

Nice to see you Momdukes and thank you for sharing your experience with us.

I am in the process of getting started on the weekly Avonex shots. I am so nervous, but am praying that the side effects that ive read about will take it easy on me. I have been told by my MS specialist that I should start the shots soon to prevent my MS from being disabling. He was very optimistic about Avonex and the hope that it will prevent flare ups and more lesions. He also said the Avonex should "shrink" my existing lesions. Im fortunate because my MS was diagnose early on! I would appreciate any feedback from those taking Avonex. Thanks

Hey Nadja!

It is really good to see you.  I have posted a follow up article giving the other perspective and your quote is in it!  So I hope you come by to see.

Thank you so much for stopping by.

This is really good to hear Kelley!

I am always happy to hear about good outcomes.  Was wondering if you wanted to write a sharepost about your experience in taking Copaxone.  I am sure a lot of our readers would be very interested in hearing what it is like. 

Thank you so much for contributing to our discussion!