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.:):hug::hug::hug:

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. :hug:

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! :(

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:hug:
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.:hug:

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! :hug:

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

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.:hug:

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.:mad:

Hugs,
Becky:):hug:

Sally,

Ouch, it hurts like crazy! I took my last Avonex shot last Saturday and it's nice to have a break from shots. I'm ready for some relief.

Hugs,
Becky:)

Sandy, BFF, GBA,

This has not been a good year for me. It may go down as one of my worst years. I'm ready for a break from all the drama.

I still can't believe that the needle caused this kind of damage so fast and in both thighs!! The muscle and nerve pain is just awful. I have lived with back pain and sciatica for 17 years and this is just the worst.

Dr. Husain thinks the Gabapentin might help my sciatica along with the thigh pain so I'm hoping it will. She said it will take several weeks to kick in. I'm so ready and feeling so sorry for myself. It's just pitiful!

If I go on Copaxone, which is probably what I will do in October, I'm not even worried about those site reactions. Nothing compares to the Avonex shot mess I have going on.

Tell those doctors to quit using Jim as a guinea pig and get him on the right med. I hope his new Neuro is a good one. Copaxone is the one Dr. Husain is now recommending, she said it had none of the bad side effects like the other DMD's. She did mention Beta having side effects but I don't really remember what she said about that.

I had my note pad with all my questions written down but was so stunned, I didn't write down her answers!:o

Love Ya,
Your BFF:hug:

Beary,

My optimism is a little down today. I'm feeling sorry for myself and in pain.:mad: It's just a passing phase and won't last long. I refuse to be in a bad mood for very long.

My optimism should be back tomorrow.:):hug::hug:

I called the Avonex Access program today to tell them that I was going off Avonex. The rep. was extremely nice and very sympathetic. She transferred me to the nurse and I told her what had happened to my muscles and nerves in my thighs. She was very sympathetic also. I asked both the rep. and the nurse if they had heard of this problem and they said no.

They asked me the normal questions about how I was giving myself the shots. I told them I started last August and was doing everything the same and followed the instructions. No problems whatsoever. They asked me if the problem shots were from the same batch of Avonex. I said no that I had reordered a shipment in May after the first reaction and had spoken to the nurse at that time. The second shipment came in mid May and the problem continued and became worse.

I told them that my blood work came back fine and my Neuro said it was not from the Avonex but it was muscle and nerve damage from the needles.

The nurse transferred me to a woman who said she wanted to make a report and submit it to the FDA. I asked her if she had heard of this and she never really answered me. It was strange.

She kept trying to minimize the reaction I was telling her about. She was trying to interpret it as a site reaction in a small area at the shot site. I kept telling her that if she spread her hand out just above her knee and went all the way up her thigh to the end of the muscle towards her torso, that was how much area that was affected on both my thighs. All of the top thigh muscle! I also have tenderness, pain and swelling on the outer sides of both knees.

I told her that my skin on my thighs was tight and did not feel like my skin. If anything touches it, it hurts. It is burning underneath the skin and sharp shooting pains are all over the place. The skin also looks weird and dimpled.

Anyway, she seemed to be trying to end the conversation with an attitude that it was not a big deal (my words not hers). I wouldn't hang up until she heard me out. It is a big deal to have muscle and nerve damage from a shot and they need to know that I might have permanent damage after 50 Avonex shots in my thighs.

I have read all the fine print about Avonex and have not seen one thing about needle damage. If I had a clue about this after talking to the Avonex nurse after the first reaction, I would have called my Neuro and stopped the shots before it became so serious.

I guess I am ranting but I am po'd about this. I have no intention of suing anyone or causing any problems but they need to let people know if this is a possible side effect. If MS patients have site reactions to shots like I do, then maybe they should not be injecting into the muscle and should be warned.

I'll stop now. I'm working on getting my attitude back on the good side.:(

Aww, Becky. :hug: Well, they say that laughter is the best medicine so I hope there's a FO marathon on today. I have faith that Jeff and Zoila can bring you around. :)

NO need to feel apologetic or regretful about your conversation!!! I think their reaction is absolutely to be expected. Unfortunate, but true. I'm glad you had the opportunity to speak your mind and didn't back down!!

Becky :hug::hug::hug::hug::hug::hug::hug::hug::hug:

Becky, I keep reading this thread and wanting to respond, but I haven't been able to research anything intelligent to add. :Crazy 2:

From what I've read:

"Most complications of intramuscular injections are a result of the drug injected and not the procedure. However, it is possible that localized trauma of the injection site may result as part of the process."

http://www.enotes.com/nursing-encycl...ular-injection

And, this is a good site for describing some of the complications from intramuscular injections:

http://www.medscape.com/viewarticle/464467_3

The part that has me stumped is that you had a reaction in the left side, due to the injection in the right side. :confused: The other issue is that the doctor says you are not having a reaction to the med itself. :confused:

I don't understand what could be happening here, but clearly you are in a lot of ongoing pain. I hope this heals and you improve quickly. :hug:

Cherie

A huggy bear for you, Becky....
http://home.earthlink.net/~sal.pal/s...ures/hugs2.gif

Beary,

Laughter is absolutely the best medicine.:) The best way to find humor on TV is watching reality TV, right? LOL Mindless TV is quite amusing!:)

Yes, Beary and I are addicted to Big Brother and we are not embarrassed to admit it!!:D

I don't regret making my point with the shot problem but I seriously doubt that it will change anything. I wanted the woman to know what happened to me and made her listen. She had no choice since I kept correcting her and although I wasn't nasty, I was quite firm to put it mildly. LOL

Hugs,
Becky:)

BFF,

Thank you for the hugs. Hugs right back at you.:hug::hug::hug::hug::hug:

How are you feeling today?

Becky

It's a good thing to have it documented. I am glad you stuck to your guns with the person who was taking the report.

I went through a similar thing with the Teva people when I had the reaction with Copaxone They kept telling me that severe fatigue wasn't a side effect of Copaxone. I told them it wasn't unless someone reported it and my neuro wanted it reported. She finally relented and took the report.

Same issue when I had the anaphylatic reaction to Zantac. The doc said no one is allergic to this stuff. Yep, they were right until then. They sent a drug rep from Glaxo out to test me. Had a pretty stringent protocol to find out if it was the drug or the coating. It was the drug! :eek:

When people have reactions to medications and docs or bureaucrats don't believe you, you just have to stick to your guns to make them believe you. There is a reason why you are reporting these reactions. It's to help those who follow behind you.

Good for you Becky for sticking it out. ;)

Cherie,

Thank you for doing the research on the intramuscular injections. I checked everywhere and couldn't find anything resembling what happened to me. I guess it will be one of those MS mysteries why this happened.

The left thigh reaction totally freaked me out. None of it makes sense to me.

There are so many things I don't understand about MS after all these years. Why did my heart try to stop beating until it got so bad I had to have my first pacemaker at age 45 and just got my second one? Why does my heart skip every other beat and I have to take medication to control that along with the pacemaker. Why do I have such horrible back pain? Is this part of MS? I think so but don't know for certain!

Some doctor's say it's all MS related and some don't think so. I tried to quit figuring it out and just go with the treatment.

It is very painful and I can't wait until the Gabapentin kicks. Thanks for your help and good wishes.

Hugs,
Becky:hug:

Bff,

In a word "crappy". It will get better though!:):hug::hug:

Sally,

Thank for for the huge huggy bear.:D:D:D Very sweet.:)

Cheryl,

I think it's a good thing to have it documented also. They had my first phone call on their records from May when I had the beginning of this. The rep. said to call my doctor for a topical ointment if it was bothersome. I knew that wouldn't help so I didn't think it was necessary. I should have called my Neuro but thought the rep. knew what she was talking about. They even transferred me to their nurse so I could tell her.

It's just so darn irritating when you know that something is wrong with you and the professionals blow it off. You know first hand from your experiences.

I have been on 2 meds that have been taken off the market now...Zelnorm and Vioxx. Then had the Chantix prescription that I didn't take after hearing the dangers of it's side effects, thank heavens. I called Pfizer and got a refund on my prescription a few months ago with a letter attached that was basically saying it wasn't the drugs fault. I don't remember exactly what the letter said but they refunded my money in no time at all. That does not happen!

It's ridiculous to have a "one size fits all" attitude with these drugs since we are all different. Ages, gender, size, allergies and other health problems. It doesn't matter, just take the shot and if you have a reaction, it's surprising to the drug companies.

Avonex transferred me to this woman to make the report to the FDA in the first place. She cops an attitude that didn't go over well with me so she had to listen to me until I was finished talking.

I don't know why this happened but it shouldn't have happened. I have to deal with this pain until the Gabapentin kicks in and I hope it will help. I may have to live with this muscle and nerve pain that has nothing to do with MS but caused by a huge needle I was using trying to prevent progression of MS.

Thanks for your support!:hug::hug: I think I am getting cranky again. It was 106 yesterday and it is already 104 today so it's just miserable heat. I let my dog out long enough to potty and then get her right back inside. The A/C and fans are all on and I'm getting ready for my afternoon nap.

Hugs,
Becky:hug::hug::hug:

Becky, I can't believe you outed us, LOL. :wink: I hope you're having a better day and remember, watch out for Peepaw! :p :yikes:

Beary,

Yes, I outed us as BB addicts! LOL Admit it, you know we would be so bored without it.:p:p

My niece Sarah is coming over to stay with me tomorrow so it will be a good day. She starts second grade Monday and loves to visit with her Aunt Becky. She is the sweetest!:)

I will watch out for PeePaw. Thanks for giving me the heads up about him.;)

I wouldn't exactly say I'd be bored. However, I would definitely say that I'd be way more productive and get to sleep earlier! :p (But yes, I'd also have less fun in the summer!) (And for any people looking at this who think we're crazy, well, okay, we are -- but it's not the actual show itself that makes it so fun!)

I would be bored since I don't have much of a life staying home all the time. LOL I agree with everything else you said.:cool: I love goofing on those people.:D:p:cool::)

I thought I would update my thread a little bit.

It seems like my thighs are a tiny bit better but if I do much walking or activity, they start big pain. They look so swollen and feel so tight. I guess the thigh muscle is causing the swelling. I may try putting ice on them after my nap and see if that helps.

I was up and down a lot Tuesday when my Niece spent the day with me and my legs really hurt. I was pretty active yesterday also and the pain is really bad both muscle and nerve. I did not sleep well last night because I couldn't find a comfortable position for my legs.:(

I think I need to keep them elevated and be more inactive for a few days. What a drag:(

I started 2 Gabapentin a day on Wednesday and will start the full dose of 3 daily next Wednesday. I hope it starts helping soon.:( I feel a little goofy, not drugged out or anything but more fatigue and cog fog is worse for a few days after I started the pills.

:hug::hug::hug::hug:

My thigh muscles are still hurting and the nerve pain is still bad but might be a little bit better. I just feel terrible and am exhausted and my back is in major pain.

I woke up this morning and sat on the side of the bed to take my morning pills. Heart pill, Premarin, Lexapro, Gabapentin and Zocor.

I don't know what hit me but I thought about the Zocor! I posted on the Medication thread several months ago and remembered reading about Statins. I got on and checked a few of the threads and then looked up the side effects of Zocor.

Oh my gosh, there are tons of side effects from Zocor including muscle damage and atrophy. It blew my mind when I saw that.

I started Zocor 4 days before my problems began in May. I got out my receipt from the pharmacy and checked the calendar to be sure and then made a call to my Neuro's office.

My Neuro's nurse called me back and I told her that I was still just miserable and my thighs were not any better after stopping the Avonex shots. I told her that I don't think I mentioned anything to Dr. Husain about starting Zocor. I didn't even give a thought after she saw my thighs and the damage.

I asked the nurse if this could be my problem and she said yes. Zocor had terrible side effects and that I should stop taking it immediately and tell my PCP about it. I will see my Neuro in Oct.

It all makes sense to me now. I may be all wrong about this but it sure sounds logical to me. If the Zocor can cause muscle damage, it would go straight to the site areas on my thigh muscles where I have been injecting and it is weaker than the other muscles. It just doesn't make sense to me that both of my thighs could develop muscle and nerve damage at the same time!!

I guess I will have to wait and see what happens when I stop the Zocor. I hope that I have found the answer to this. I have searched everywhere and have not found any information about this. I pray that this damage will not be permanent because it really hurts so much. I am worn out.

Oh, Becky, I hadn't thought of the Zocor either although I remember reading about the muscle damage it can cause.:eek: Your PCP and pharmacist should have been on top of this..:mad: Darn Docs!

I hope this solves the problem for you, Becky. I 'll be praying for you..:hug:

Now this makes MUCH more sense to me. :icon_exclaim: It didn't seem that it could be a injection reaction of any kind, since the pain happened in the opposite leg of the shot . . . and especially if the doc thought it was NOT the med itself. :Hum:

I don't know why it didn't occur to me either, that maybe it was another med you started around the same time. :Crazy 2:

If it is because of a side effect from Zocor, would this a temporary side-effect, or could it potentially permanent damage?

Cherie

:hissyfit: BECCCKKKKY!!!!! Oh my!! I hope that's the answer too! :hug:

Sally,

I don't remember seeing anything about muscle damage from Zocor but remembered it had bad side effects. My PCP checked my blood 6 weeks after I started Zocor and everything came out great. My cholesterol was in the normal range, it really works fast.

Thank you for your prayers.:hug:

Cherie,

I know!!! It's the only thing that makes sense to me now! It has been driving me nuts trying to figure out how this happened!

My Neuro took one look at my thighs and I described the pain and she knew it was muscle and nerve damage. She said it was serious. I didn't even think about it being from Zocor since it was in the area of my thighs where I inject. She was just as puzzled as I was at how it could happen to both thighs within a few weeks. She said it wasn't the Avonex because my symptoms hadn't changed and the problem was in my thighs.

I have no idea why I thought of it this morning! It just hit me, I guess because I just don't seem to be getting any better. I keep thinking I am but I'm trying to be optimistic because I'm not better. When I started looking for my zocor receipt and saw the date I started it was 4/30 and my reaction started 4 days later, I couldn't believe it.

I googled zocor and side effects and there it was. It's a rare side effect. The muscle and nerve damage really scares me because I don't know if it will heal. They look terrible and I have a couple of small numb areas. What a mess!!

Everybody I know is on cholesterol medication so it never crossed my mind until today. Everything we take has side effects. I'll just have to wait and see how things go.

When my Neuro saw the damage to my thighs, she said she did not know if it would heal but hoped the Gabapentin would help the nerve pain. I still can't believe that I didn't tell her I was on zocor because she would have picked up on that immediately.

Beary,

I think it has to be the answer, don't you? If you get a chance google zocor and see all the site showing side effects. It fits exactly to the problems I am having. I can't believe I didn't tell my Neuro about the Zocor! I'm scared that this damage will not go away. I don't know if muscle damage like this and nerve damage can heal.

I just hope I get some relief stopping the Zocor. I am so sick of all these weird things happening to me. I feel like Murphy's Law is on my back.

Hugs,
Becky:hug::hug:

Becky, I did look it up and saw what you're talking about. I hope it will heal, too!!! What did your PCP say? :hug:

Beary,

I am waiting for my PCP's office to call back to see if she wants me in sooner than my Aug.25th appointment. She is only in her office near me on Monday and Wednesday and it was too late to call yesterday to talk to her nurse. I will let you know when I hear from her nurse.:hug: