Unbearable site reactions with C, When to call it quits?

[bops_mama]

I have kind of gotten used to taking my Copaxone in the past almost 2 months...When i first started, the reactions i had were a little redness and stinging..NOW, I have redness, stinging and giant WELTS and a sore spot from the injection site that do not go away for a week.....Shared Solutions told me this was NORMAL......

How do i know if this is a "normal" reaction, or an adverse reaction to the Copaxone? Has anyone else had similar reactions?????

I dont know if i can deal with these reactions forever, but how in the heck do i know that this isnt as good as it gets?

[cloudedmoon]

I would call my Neuro today and tell him you want to change. You don't have to stay a drug that is unbearable to use. It is really important to be on DMD, so you should be comfortable with using it. There are other choices.

[rdmc]

I don't use Copaxone, I use Betaseron, and have for years. But I always, and have always, gotten a welt about the size of a quarter, sometimes bigger. It's a raised red welt, takes a day to get full size, is itchy, and takes about a month to fade out.

I think from what I've read that's a pretty normal site reaction to Beta, for a lot of people. But as I said, I have no idea about Copaxone and what's considered normal.

If they're getting worse, and you have to do it everyday, I'd sure report it to your neuro or to the Copaxone nurse.

[LisaL77]

When I spoke with Shared Solutions, they emphasized the importance of heating the area before injecting, and icing it afterwards. I do not heat it, because I hate anything hot/warm against me, except my dogs. I do, however, ice it religiously after.

I also get those GIANT red/raspberry hued lump/spots and for some reason my legs are very, very prone to bruising now, too. They don't go away. I bought capri pants and very long shorts.

I still think it's worth taking Copaxone despite this problem. IF I get some ugly spots on my skin, it's better than flu-like symptoms.

[bops_mama]

Lisa,
We were DX'd about the same time....i started icing a few days ago and it seems to help a little bit..... i have never really heated because they said it "may" make it more comfortable, but to me it seems about the same...do you get any sort of welts or site reactions afterwards??

When I spoke with Shared Solutions, they emphasized the importance of heating the area before injecting, and icing it afterwards. I do not heat it, because I hate anything hot/warm against me, except my dogs. I do, however, ice it religiously after.

I also get those GIANT red/raspberry hued lump/spots and for some reason my legs are very, very prone to bruising now, too. They don't go away. I bought capri pants and very long shorts.

I still think it's worth taking Copaxone despite this problem. IF I get some ugly spots on my skin, it's better than flu-like symptoms.

[Temagami]

Yes, I get the welts that simultaneously itch and sting and last for about 4 days. It sucks. I am procrastinating right now taking an arm shot b/c those hurt a lot. I like T and W nites - hip shots b/c those hurt the least. I had high hopes for BG12 and then just learned that it is no longer on the FDA fast track which means it could take 18 months from Feb. 2012- I just find it hard to stomach doing the shots for that long when I´d pumped myself up to believe it could end in the fall. But-- tis better than feeling like I have the flu every week.

[Carole A.]

I have been on C for 5 months. I have had the same reaction and sometimes still do, especially on my legs. It does get better, though. Hang in there. I do recommend heat before and ice intermittently after. I do it in the morning, so I use the icepack on and off thoughout breakfast. It helps. Good luck!

[Cat Mom]

Bops, this is going to sound utterly ridiculous but it really works. You know that big, red welt that forms... push down on it for approx 30 seconds, don't rub, just push down with your finger immediately after the needle comes out. Then ice and then Benadryl cream or any anti-itch cream.

I've been on C since 2007 and read this tip on this message board, again it sounds like the last thing you would want to do to a painful welt but I urge you to give it a try before giving up on C.

Jen

[LisaL77]

I get the welts, the itching.

I'm gonna pick up the benedryl gel. I am sick of it, too, but I am willing to endure a lot to give C a chance.

[agate]

I stayed with Copaxone for 3 years, and the site reactions are normal for a lot of people. I had the same site reactions you're describing, and Shared Solutions told me they were normal.

The situation improved a lot after about 4 months, as a lot of people on this board have also said.

Benadryl cream (extra strength) helped me--and so did the warm gelpack before the shot. I did the cold gelpack after the shot for a year or more, but by then I was having so few problems with site reactions that I gave that up.

You'll reach a point where you hardly ever have any site reactions. I did keep getting them in my arms but they weren't as bad as in the first few months.

[twisterred]

I have kind of gotten used to taking my Copaxone in the past almost 2 months...When i first started, the reactions i had were a little redness and stinging..NOW, I have redness, stinging and giant WELTS and a sore spot from the injection site that do not go away for a week.....Shared Solutions told me this was NORMAL......

How do i know if this is a "normal" reaction, or an adverse reaction to the Copaxone? Has anyone else had similar reactions?????

Yes, me too.
For a while they were crazy big and lasted a week or more.
then, they stopped getting DO big, SO red, SO itchy.

Now, the lumps vary according to location.
Smaller in softer areas, larger, hotter and more red on my thigh.

What you are experiencing is NORMAL.
IMO anyway.

Just know 6-9 months from ow, it will suddenly start to get better.

[masterharper]

I have been on Copaxone for almost a year now. When I started, the reactions were minimal, mostly annoying like a bee sting.

Then about 3 months into it, I started getting HUGE red welts that itched for days, but only on my arms. I was taking benadryl topically and orally to lessen the effect.

So, I stopped injecting my arms. I never had the HUGE welts anywhere else. I have been much happier since I have up injecting my arms.

Do you get the huge welts with every injection, or only ones that you have in certain areas? Good luck with whatever you decide.

Also, I never pre-heat or post-ice. That irritated me even more.

[cosake]

Do the sore spots bruise, and/or affect your day to day activities ?

I was on Copaxone and had no side effects except for bruising and extremely sore spots, to the point that I was limping for 3-4 days after a leg shot, and then it was time to do the other leg. I couldn't let anyone hug me or touch my arms because they were so incredibly sore, and it was difficult to sleep because I couldn't get comfortable.

I had multiple training sessions with the nurse and with SS on the phone and consulted my doctor and we decided that this was a little bit extreme. I am very sensitive to medications in general, so I wasn't too surprised. I transitioned to 4 belly shots and 2 hips shots a week and that got to be too much with so many belly shots.

I tried every suggestion and wanted to stay on C because I had no other side effects at all, but it didn't work out.
So, now I am on Gilenya and it is working out fine. Just started my 4th month.

[daelite]

I used to take Copaxone back in 2001, I had huge softball sized or larger welts that lasted about 2 weeks each. They itched so bad! I ended up going off of the med because of it. God forbid any of the medication touch my skin, even a drip felt like acid on my skin.

This is one of my two, no way drugs. Hope things are going better for you now.

[mommy1]

3 months

The important thing is to find a treatment that works for you that you will use. I was starting to skip Copaxone shots because of reactions. I lasted three months. After showing my Copaxone reaction sites to my neuro, he suggested Avonex.

I have been using Avonex for over 2 years. Don't let the IM idea scare you (it did me at first), I find the injections less painful, not one site reaction ever and since you only use it once a week very convienent and I have not had any flu reaction that could not be handled with 2 Alleve the day of the shot.

So Avonex for now works for me. There is more than one way to skin a cat. Don't be discouraged. Tell your doctor everything and I know you'll find what's right for you.