Extavia to start or not start

[Elaine2824]

I am new to this, I was diagnosed a year ago last June 2012 with RRMS. I am 62 years old and supposedly have had MS for over 30 years.

In my early 30's had Bell's Palsy, in my 40's went blind in my left eye for a week, and carpal tunnel in both hands- witch turns out to be lessons on my spine (not carpal tunnel). My 50's went numb from my toes to my waist with a tight pulling band around my waist the MS Hug. Each and everytime I would have some type of symptoms I was under a lot of stress. I have removed the stress from my life change my diet and exercise regularly, I am felling the best I have felt in a long time.

Now for my question my Neurologist wants me to start Extavia this scares the bejesus out if me. I am not a big fan on taking drugs that are going to mess up my liver, kidney and thyroid, but of course they can put me on more drugs to help with the side effects. I fell as if I will be going from no drugs to god only knows how much more . Does anyone not take MS meds? And if you take Extavia can you let me know how it effects you? I AM SCARED TO START THE SHOTS AND SCARED NOT TO.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[KatieAgain]

Extavia is an interferon. All the drugs have potential side effects. That is why it is a very personal decision to start on a DMD.

I have had MS since my 30s, I am now 50. Went drug-free for the first half and started drugs in my 40s. I have been on Avonex, Rebif, and Copaxone. I am getting ready to start Tysabri here shortly. I have not taken any of the oral meds....yet. You need to know I am very pro-DMD, but again it is a personal decision.

It sounds like your disease progression has been very mild and relatively stable from what you wrote. So, at age 62, is it time for you to tip the applecart if you are enjoying life as it is?

If so, my recommendation would be Copaxone or Tecfidera. Why don't you talk to your doctor about the alternatives. Ask him specifically why he wants you to start on a DMD. Have your MRIs been unstable? Interferon is hard to wean on for most people.

As far as giving yourself shots...it's not so bad. I believe all of them are auto inject now.

Good Luck.

[Elaine2824]

Katie thank you for your advise. I have very few lesions on my brain maybe 2 or 3 real small ones. And two larger ones on my spine, that has given me MS hands. I am felling really good, walking 6 miles 3 to 4 times a week and do stretching exercise for 40 min after my walks.

I have just divorce my husband after 42 years. I have no stress in my live for the first time. Each time I would have an episode was during very stressful times, the loss of my son to brain cancer he was 21 when diagnosed he lived 5 horrible years in pain. And the most resent during my divorce, walked away from an abusive 42 year marriage.

I have never been one to take drugs find it had to do. I believe that I am going to tell my doctor that for now I don't want to start on DMD going to see if having less stress , good diet exercise will do it for me. If I have a relapse then will start DMD and will ask about Copaxone.

I fell as if I start the Extavia it will lead to a hole bunch of more drugs to counter react the damage it will do to my liver, kidney and thyroid, depression, etc. I take no drugs and fell good so going to do this until I can't. Now just have to get the courage up to tell my doctor. Thank you again

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[KatieAgain]

Darling, I am so sorry about the loss of your son. It is heartbreaking. I lost my sister and my parents will never get over it, so I do understand.

I think you are making a very wise decision. Walking six miles three times a week. You go girl!