Clear as mud? I think our footprints are beside one another's Dej haha!

I can understand your husband's concerns, especially based on past experiences you've had (cancer). There's no 'right' answer sometimes it feels like. :(

At the end of the day, you're so very, very lucky to have a compassionate hubby.

I wish there was a "right" answer. I wish someone could say "Hey! Copaxone treats todays sx and has a 51% chance of preventing relapses, and ya know what, if you do have a relapse it makes it 50% less severe than if you were not using this med!" isnt that great?!

The best I can get is "these are the tools we have available, and we want to keep you as healthy as possible, so when the real tx comes along, you are not so disabled you dont qualify to use it." What kinda horse puckey answer is that?! Copaxone has a 33% chance of helping to prevent the next relapse, and if you have a relapse it has about a 30% chance of helping you recover faster, and decrease the chance of permanent disability. I dont have revolving flairs. I have one every couple of years, and then its a drag foot, and a blinky eye.

If it wasnt for the optic nerve thing, I would have laid it down. That is scary to me. I dont want to risk my eyesight. I also dont want night sweats, and sleepless nights with rashy skin and eyes so dry I cant blink.

I just feel like I am darned if I do, and I am darned if I dont. Everyone keeps saying the same thing "there is no right answer." it was the same way when I had to pick a DMD. "there is no right drug."

Can you tell I am moody? I am feeling a bit cornered, and I am upset that I dont feel my opinion was wieghed before decisions were made for me. I get it, I understand it, but that doesnt mean I have to like it. With the help of my MS nurse, I am combing through stats, and my medical records to better weigh the equation to come to MY choice.

I feel trapped either way. I dont want to keep taking it, but I dont want to stop. Does that make sense? :confused:

two days on one off
 

Hi. I had trouble with side effects while I was taking C. My doctor suggested I take the medication for two days then take a day off. So two days on one day off. She also suggested that every other day is a lot better than nothing.

I found the two days on one day off routine effective and the side effects were tolerable. I took it that way for two and one half years with no major relapses.

I eventually switched to ty because I wanted more energy. I like the Ty a lot but C is worth taking and has fewer risks.

You DH sounds great! and your doctor too.

good luck

Katty

The verdict is in.

The DH and I talked, and talked, and talked. He is truly scared, and worried, and is really wanting me to stay on C until I simply cannot take it any longer. He has offered to get me MJ brownies to help me sleep, (HUGE deal for folks that retired from the prisons, trust me) and walks with me everyday, and has been my biggest advocate. It did help to talk to him. I am still angry, and feeling trapped when I went to bed.

MS nurse called this morn to tell me that I had 3 lesions on my optic nerves, and since starting copaxone I have only one. I had 23 or so lesions when I started copaxone and now I have 12. I asked if this could be a natural progression of the disease, or if she feels that its copaxone. She said while it could be a natural progression, and may have happened with or without copaxone, she feels that credit needs to be given where credit is due. The lesions did not back off the whole time I was on Betaseron, and yet they back off when I am on Copaxone, so ...after a lengthy conversation, and some tantrums on my part. I have come kicking and screaming back to the line of needing to stay on this med. Even if its making me unhappy.

For now, I keep shooting. I was assured they were watching the side effects carefully with me, and she gave me loads of pats on the back for being so tolerant of all the side effects. Most dont have this many, but the fact that its working she said makes it worth the fight.

Part of me is really upset, and part of me is relieved. This is good news, and this is bad news. I was told that I can take off ONE day per week if I really must. They dont want me to but see I am in the need of a mental health break, and are trying to work with me. They refused me on every other day shooting, and they refused anything more frequent than ONCE per week. Then I got a firm talking to about how if I feel I can possibly pick up that needle on whatever day off I chose, please do so.

I am happy the meds are working but crushed that I need to keep taking them. I feel pycho! half of me wants the MD to tell me "enough!" and half of me wants tools to keep fighting this disease with.

Thats my story. :o