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.

Hi Becky

Happy to hear that you got into see the neuro and found the source of the problem. Sorry that it's the DMD.

Hopefully during the next couple of months, the pain will subside with the meds and you will get back to yourself again.

Check in when you can.

PS - Lauren still hasn't gotten an appt with a neuro. She found out that her PCP hasn't sent anyone the referral! That's the hangup!

Oh Becky -- wow!

Hope that the muscles and nerves improve.

I am being switched from Betaseron to Copaxone. No big problems, like you. Just wasn't decreasing fx and severity of flares.

Keep us posted.

~ Faith

howdy friend, glad you got the answer
hope the new pill helps.
ok so it wasnt the med but you were still right it was the shot irritating the muscle. hopefully the burning pains subside real quick Becky
glad t hear its not a new MS SX

Ouch, Sorry, Becky.. I hope, now that you're off the IM shots, things will improve for you.

Becky, Bff, Go, I am so sorry for your pain. You have been through so much and now this. I remember when you told me about your leg. That really sucks. Jim's needle for Beta is itty bitty and doesn't hurt him but he's having muscle stiffness with each shot. We are also considering Copax again. He stopped that years ago because of site reactions but they weren't severe like his records state. For some odd reason his neuro said that but really they were just red and bumpy. Remember I told you Jim was his guinea pig? Anyway, since we have a new neuro we're going to talk about it at the next appointment.

I hope this heals for you and your back with us soon!

I'm so sorry about this but I am going to share in your optimism. Feel better soon!

I'm glad I found out what was wrong too. It's a mixed bag of relief and shock on how this could happen.

My Neuro said it would take a few weeks for the Gabapentin to help with the pain. I'm so used to having pain but not too happy about having my thighs on fire and stabbing.

Thank you for the hug and kind words.

I didn't hear back from Lauren today about her latest info on her appt. I hope she gets in soon. She said she would keep me updated.

Faith,

I'm ready for some pain relief from this and hope it goes away. I'm also ready to be able to sit and play on the game board and post on NT. It's just going to take some time.

I hope you do better on Copaxone.

Hugs,
Becky

Hi Frank,

I hope you are feeling better.

No, it wasn't the Avonex but the needle messing up my muscles and nerves and I didn't even know it until it was too late. I was relieved that it wasn't a new MS problem but never expected this from taking Avonex shots.

It sure does hurt.

Hugs,
Becky