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Old 07-31-2008, 08:55 PM #1
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Becky21 Becky21 is offline
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Join Date: Jan 2008
Location: Heartland
Posts: 2,010
15 yr Member
Becky21 Becky21 is offline
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Becky21's Avatar
 
Join Date: Jan 2008
Location: Heartland
Posts: 2,010
15 yr Member
Confused Neuro Took Me Off Avonex - Shot Problems

Hi Friends,

I had a site reaction in early May about 9 hours after I took my Avonex shot. It was the first time this had happened since I started Avonex last August. I always have site reactions in my arms so I have only had shots in my thighs. I wasn't too concerned about the reaction it at the time.

The reaction was deep pain where the needle went in and sharp and burning pain in a large area of my thigh. It really hurt and I have a huge pain tolerance. I could not touch the area, it hurt so bad.

I spoke to the Avonex rep. about it and was told that it was normal and that I could call the doctor for a topical ointment if needed.

The next week I changed to my left thigh and everything was fine. I continued with that side for several weeks until my right side felt almost normal.

I gave my shot on the right side at the 6 o'clock area and had no side effects. I relaxed and didn't give it a thought until the left side started hurting, burning searing pain. Not the side I gave the shot in but the left side.

This was around the time I had the pacemaker adjustment problem and found out my Dad was very sick with COPD. Very stressful time for me.

Anyway, I tried heat, ice and massage and nothing helped. Both of the tops of my thighs were swollen from the kneecap up towards the top of my legs and the pain was awful.

I saw my Neuro Tuesday and she said that my muscles and nerves had been damaged from the intramuscular shot. I nearly flipped, I thought it was either a new MS symptom or it could be the Avonex. My blood work came back fine so it wasn't the Avonex.

It didn't make sense to me that this could happen to both of my thighs around the same time. My Neuro said that she has seen it happen before but not often. She has seen one side react like this but not both. She spent one hour with me and showed me a picture of the muscle and nerve areas that are affected. She has taken me off Avonex for good and she said that some people can not tolerate intramuscular shots and I am evidently one of them.

She said the situation was serious and prescribed Gabapentin for me to start taking for the nerve pain. She said hopefully it will get better but she can't say for sure if it will heal.

I see her again in October and she wants me to continue on another med. I told her to make the decision because I do not know what is best for my situation. She mentioned Copaxone and said we will discuss it in October.

She said even though my MS has been a slow progression for the last 15 years when it became SPMS that I needed to be on a DMD. She said that since I can't have MRI's because of the pacemaker, if I take a turn for the worse that I could fall into a black hole and get worse real fast. She said that there would be nothing we could do if that were to happen so the best thing is to stay on the DMD. I agree with that.

Anyway, I haven't been on the board because I am only comfortable in my recliner or my bed. I thought I would let you all know that I will be back soon when I can sit comfortably in my computer chair. I miss my board buds and playing my games.

I'm glad to have a break from the shots and to know that it's not a new MS problem. Not so happy about the muscle and nerve pain damage but am optimistic that it will get better soon.

Hugs to everyone.
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