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Posted: Tue Dec 12, 2006 1:47 pm Post subject: Lumpy bumpies and copaxone
Hi
I was on Copaxone nearly 4 years but have had to give it up as currently pregnant (yippee~!).
But take care about rotating. I had 56 sites for rotation, and never went back to any within a month minimum - yet I have really bad lipoatrophy.
There are severe dingy areas on my legs as well as porridge-like areas all over legs and bum. I am delighted about taking a break from teh injections, but dread what will happen when I have to start again, as my legs look really bad. Even the Copaxone nurse was shocked. I had mild lipoatrophy for 3 years then it suddenly got really bad, and she thinks it may have had somethimg to do with injecting to shallow and not massaging and warming the area after the injection. I don't know, I think it's just the drug and it has a chance of happening to anyone on it. Make sure to tell your nurse/doc if you see any area of lipotraphy starting, even if you think you may be imagining it. I left that for too long and the areas got worse. Copaxone worked great for me for relapses, but the poor ol legs are much the worse for wear.[/b]
Hi - I'm new to this site. After taking Avonex for years and gradually worsening, my neuro wanted to put me on Novantrone. I objected and opted to try Copaxone. I have been on it since last August and have seen improvement in my physical condition.
The injections also freaked me out, but found the injector a godsend. When my injector broke and I had to do it manually, I thought I would never be able to accomplish that, but I did! Although I found that when I bunched up the fat and manually injected, it didn't seem to "lump and bump", I am back to the injector and find it easier. My nurse told me to massage the site 24 hours after and that helped somewhat. My legs are a mess and I know I will never wear a bathiing suit again, but that's okay, as I'm still standing!
I'm so glad I found this site and know that others are experiencing the same problems. And it beats feeling horrible the next day when I was on Avonex.
Joined: Feb 10, 2006 Posts: 394 Location: Northern Virginia
Posted: Thu Mar 01, 2007 1:25 pm Post subject: stinging sucks
We have been on Copaxone for about 6 months. There is about 5 minutes of stinging that follows each injection. While we do clean the site with alcohol we fan it dry for more than a minute and it's not the cause of the stinging.
We have found one (costly) solution for the stinging problem (see separate post in this forum). Wondering if anyone else has found a different way to reduce the stinging sensation problem.
Hey,
I've finally managed to see an MS nurse and actually got a suggestion which seems to be having a dramatic effect on reducing the length of time for the stinging sensation after injection. She suggested putting a gel pack into the fridge and using that after the injection. I had been using a heat pack but she said that was just making the pain last longer. It's still no picnic, the injection still hurts but the stinging doesn't last nearly as long. It's been such a huge improvement for me that I'd definitely recommend trying it out.
My nurse also mentioned not massaging until 24 hours after injection, which suits me at the moment since massaging straight away hurts!
Joined: Feb 10, 2006 Posts: 394 Location: Northern Virginia
Posted: Wed Mar 07, 2007 11:49 am Post subject:
gracie wrote:
Hey,
I've finally managed to see an MS nurse and actually got a suggestion which seems to be having a dramatic effect on reducing the length of time for the stinging sensation after injection. She suggested putting a gel pack into the fridge and using that after the injection. I had been using a heat pack but she said that was just making the pain last longer. It's still no picnic, the injection still hurts but the stinging doesn't last nearly as long. It's been such a huge improvement for me that I'd definitely recommend trying it out.
My nurse also mentioned not massaging until 24 hours after injection, which suits me at the moment since massaging straight away hurts!
Thank you, we can try this.
Also, I'm talking about a massage from a massage therapist. Meaning, you might go get a 60 minute massage and the next 14 or so shots would go much better. This is our experience. I tried doing some "amature" massage and this did not work.
I tried the ice pack after injections when I first started injecting but read some posts on this forum that said it was a bad move, can't remember why. My MS nurse has said I should never ice the area before an injection as this will tense up the area and make it more painful, also she said that the cold pack should never be colder than fridge temperature. She also asked me to stop using alcohol wipes as she said they tighten the skin aswell. I know that won't affect the stinging but I get bruising sometimes and she said that might be a factor in those cases. She said just wipe the area using water and cloth.
Hope that's of some interest, I know I'll be trying out the massages you found helpful... as you say it's too expensive for a long term solution but a nice treat every now and then anyway
Joined: Feb 10, 2006 Posts: 394 Location: Northern Virginia
Posted: Thu Mar 08, 2007 12:35 pm Post subject: Using Ice
1) I think the advice above is to use ice after the injection and not before.
2) I'd love to know if anyone else has had the "massage" effect, or more importantly, does anyone genuinely know what it does that "amature" massage doesn't seem to do.
Joined: May 10, 2007 Posts: 6 Location: Louisiana, USA
Posted: Thu May 10, 2007 5:12 am Post subject:
DD on Copaxone for 1 month (newly diagnosed), using ice after the injections, and massaging the lump after 24 hrs. Both seem to help. Shared Solutions nurse has recommended heat BEFORE the injection and ice AFTER, as well as massaging the lump AFTER 24 HOURS.
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