Multiple Sclerosis (MS) Support Group

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Eloise 08/25/2008

I have been on Avonex for about 20 months now (with one or two ocassional 'vacations' from it). I spent all day today dealing with the side effects of last night's injection. I should not be getting these side effects anymore. I want to quit the shots--not just the Avonex, but all of it. Just take LDN. I mentioned this to my neuro. once already and he didn't agree. I am not in an area where it is easy to switch doctors (they are quite rare and finding a good one--like the one I have---is really hard). I have R/R and haven't had major regression of physical function (cognitive, yes). Sometimes I think that w/o the Avonex or other nasty drugs, I would even get better at cognitive function. No new lesions since beg. the Avonex which is why I think my neuro. wants me to stay on it. I am ready to take a chance and go off of it for a few months and just try the LDN. Anyone else done this? Any suggestions?

deleted_user 08/25/2008

And you do not want a different CRAB drug, I guess... ?

deleted_user 08/25/2008

My side effects from Betaseron went away. I have a friend who had to switch to Avonex, she had the same issues you're having now. Also, when you go on a med 'vacation' you have to go through some of the aches again after your 'vacation' is over.

I realized it's no fun to do, but would think getting good MRI reports would help keep you on something that seems to be working.

Don't want to insult you, but what about an antidepressant? There were a couple times in my life I had to take them.

Good luck to you! Maybe when the rest of the world wakes up they'll have more ideas.

deleted_user 08/25/2008

you've invested so much effort already, i don't want to see you give up now...

if staving off progression is what these treatments are all about, staying on your program appears to be the only option....really...

hang in there! you've accomplished so much!!!

deleted_user 08/25/2008

If it's the needles that sway your decision then maybe you can just hold off for a little while longer when Finglimod comes out. It's a pill but it has the same success rate as Tysabri. 68%

Eloise 08/25/2008

Lila,

No offense taken! Would you believe that I'm already on an antidepressant plus a small dose of another antidepressant? I guess I was just 'feeling sorry' for myself. This may sound crazy, but I think I was trying to convince myself that I really do not have this disease, therefore it would be senseless to keep taking the injections. Reality check! I'lll likely stay on the Avonex as the other CRAB drugs don't really appeal to me either and at least Avonex is just once a week. And, yes, I had two weeks 'off' Avonex so last week was the first week back 'on'. Guess I should have expected the side effects again. Thanks, all of you, for your responses.

LarryLDN 08/25/2008

yeah

deleted_user 08/25/2008

Glad to hear things are going better in your world Eloise!

That's what these boards are for . . . all of us have days we run into brick walls and need friends with sledge hammers!

Use to work with a girl who had a saying we all could use...
'Many hands make light work.'
Let me know, happy to lend an extra hand anytime you need one!

deleted_user 08/26/2008

I am really happy to take Copaxone (no side effects for me) and I take LDN. I have taken almost all of the Interferons and lived with being "vaguely" ill (I just thought that was a necessity) but since Copaxone is as effective as the Interferons and no side effects and it works with LDN I am really happy to take both.

I urge everyone to check LDN out (doesn't hurt that it is so inexpensive, either).

Larry

deleted_user 08/26/2008

I am going to have an MRI this fall to compare with my last one three years ago. I need some tangible proof that the Avonex is working and I am not stabbing myself once a week for fun. HAHA I never had the side effects that are standard. The day after I walk like a drunken sailor. No pain, just no stability. I need to talk to mu neuro to see what he thinks of bee stings. I have a girl locally who has used it for 15 yrs and swears by it. Maybe.......

deleted_user 08/26/2008

I have been on avonex for over 2yrs and still get side effects. I no longer do the injections in my arms cuz the side effects seem to be so much worse than in my leg, so now I just inject in my legs. Since my first mri I have NO new lesions so it must work and like everyone Im sick of the injections. But, I do have months where I do just fine and the side effects are not bad just very, very tired.

Eloise 08/26/2008

I've thought about skipping the arm injections and appreciate the suggestion. This last injection was indeed in the arm and I had begun to wonder if the arm was worse for side effects. You'd think it wouldn't matter, but who knows.
I agree that Avonex creates fatigue!
And, my MRIs have also been free of new lesions; thus my neurologist's reluctance to take me off something that seems to be working.
All of what each of you says makes sense. I do think I dread the shots because I know that I may become sick from it the whole next day. Sigh. When I think of it now, it's really a small price to pay and very small when I think of how much worse other people suffer. I guess I should count my blessings instead of complaining.

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