I am trying to be positive but it's not working!

Hi all,

I am coming today to let you know some of what has been going on with me.  I have been continuing to have severe side effects from Avonex and I have been on it for over 7 months and rebif for 4 months prior.  Nothing I have taken to medicate has helped.  I went back to the 1st neuro and she suggested Toradol, which I took and it was of no use...in fact my fever started after only 1 1/2 hours instead of 4-5.  I was in severe pain all over and with the headache also.  I really don't know what i am going to do.  She does want to add another med for the progression but not Imuran again...sheesh...but she never said which one.  She wants me to wait on the tysabri to see how it is going to go. Also, I now have Nystigmus in my eyes. 

 

Moving on...I had to go to the ER last night because I was in severe pain.  My Gi doc had prescribed a new laxative called lactulose and I started it yest.  By last evening I was in severe abd. pain.  I was shaking, I couldn't breath and I felt faint.  I called the on call doc and he told me to use an enema to move stuff down and get in a hot bath (just what an ms patient needs) I did both, no relief.  My hubby really thought i was going to die so off to the ER we went.  They took 2 xrays and we waited and waited, finally they came in and offered pain shots and while we were waiting for that I finally started getting relief.  They sent me home with 1 pain pill since I refused the shot.  The ER doc said I was full of gas.  I can't imagine gas causing such debilitating pain.  The MS has really affected my muscles in that area and I don't know what can be done about it....anyone have any ideas? 

 

This MS brings new things to me on a regular basis...when will it all end?

So sorry to hear your having such horrible problems, at least you know that it's not something more threatening. I don't have any info that will help you just my thoughts and prayers for you.

Hugs

 

My goodness Shell !  I hope you are a bit better as I write this. What an ordeal over Gas.

Like Cats, I agree that gas can cause all sorts of pain. Children have gas bubbles that have

them screaming and doubled over.

I also think Cats idea of changing CRABS is valid. I know that I had a bad reaction to interferons and

switched to Copaxone with no problems. It sucks that you have an injection every day, but other than

that it seems that you might tolerate it better.

Take care of yourself and we hope to hear that you are better very soon.

Dog

Hi Shell. I have been taking Avonex since 1997. There is no sugar coating it; it can suck. I self inject and people will ask me how long it took to get used to that and I always tell them I will let them know when I do. Really, I go through the same anxiety every time that I did the first time. As for battling the side effects, I can only tell you what routine has worked best for me.

I take 2 tylenol 4 hours before shot
2 more tylenol when I take the shot.
2 more tylenol 4 hours later. (side effects have already started at this point)
2 more tylenol 4 hours later (go to bed)

Side effects usually wake me up for my next dose of Tylenol about 3-4 hours after my bedtime dose. Then I go back to bed and hit the tylenol when I get up. After that it's tylenol as needed.

I have tried other routines and finally settled on this one as the best. The one thing about Avonex is that it a lot like MS. It seems to affect each of us a little differently. I have talked to some people that either don't have serious side effects or else they tolerate them better. I have discussed switching with my neuro, but we have decided to stick with the Avonex for various reasons.

Good Luck to you and the next time your curled up with the Avonex headache take comfort in the fact that at least one other person knows exactly how you feel and will think of you the next time he feels that way. Ummm, that will be next Tuesday by the way.

On a side note: It is raining in Minnesota today. It rained yesterday and it's going to rain on Saturday before it is suppose to change over to snow. For those of you unfamiliar with my wintry state let me assure you; anything falling from the sky here in December should be white and flaky.

Happy New Year to all!!!!!

Michelle,

I'm soooo sorry that u are having these problems. My experience with Avonex has been mild in comparison. Yes I have all the usual side effects (headche,chills and fever) and while it is happening I feel awful. However, taking Tylenol befor the shot and before I go to bed, during the night if I wake up and the next day as needed helps me to be able to tolerate them pretty good. For me they only last about 24 hrs and then I feel back to normal. Whatever that is. I hope that u start to feel better soon and that ur dr can help u find a med that doesn't cause u such problems.
I'll be thinking about u .

HAPPY NEW YEAR!!!

Sheila