Copaxone User's

I am finishing my 3rd week on Copaxone tomorrow evening, and I have a question for those of you that have been using Copaxone for awhile.

Does the horrible stinging after injecting ever go away?

At 5'2, 71#s, I really don't have much body fat, and I'm wondering if that has anything to do with why, the stinging is so awful, and continues.

Still grateful to be on it-just wondering if it will become less painful.

TIA
Sheila

[HVAC]

I guess it depends on the person. For me it did not but I just learned to do the injections at night and the get distracted with TV so I did not think about it.

Alex

[yorkieville]

Thank you, Alex.

I'd rather deal with the stinging than morexacerbationsns.

My husband, stands by, ready with tissue and an ice pack, and I try to distract myself, by answering an e-mail. Seemshelphlep to take my mind tof ot the stinging.

Sheila

[doublevision1]

For me the stinging did go away after a while; I can't remember how long it took, several weeks perhaps.  When I did my first dose it stung so badly I wondered if I'd be able to tolerate it every day for potentially the rest of my life.  I prepped with heat, and used ice packs afterward.  My injection sites became hard, red, warm, swollen welts.  I was initially discouraged as these injections were so much worse than Rebif which I had briefly been on.  

I was very pleased when the sting began to reduce and the site reactions were minimal.  I no longer need to heat and ice.  Now it is very rare - like every few months - that I experience bad stinging but it is never as bad as those first several weeks.  I've been taking it since June 2008.  I had a brief bout of ON about 6 months after starting it, and then not another flare for 2.5 years later.  Before that I'd had 3 severe flares in about a year.  So both frequency and severity of flares are much less than prior to starting this med.

Good luck, stick with it, and hopefully your experience will be similar or even better than mine.

[debgen]

Hi Sheila,
I agree with doublevision1. I am just finishing my first year on Copaxone. At first I needed to heat the site up first and cool after. I still use the cool pack afterward but I don't need to heat it up prior to the injection. Every once in a while I will get a bad sting but not that often. Hang in there and hopefully it will become second nature to you too!
Hugs,
Deb

[tingletingle]

Hi Debgen,

I hope it gets better for you. For me the fear of injection was a big one to get over and that probably contributed the hullaballoo that I created around each daily injection.

My routine used to be shower, heat pack, injection, cool pack/heat pack, dance around a bit, apply fresh alo vera to site, let it all dry and then put clothes on. The stinging was most pronounced in my stomach.

And then, at about the 3 week mark, I just gave up. Now my routine consists of the 20 second injection after my shower and that is it. The stinging is still present, and I avoid my stomach at all costs, but I guess I just wanted it all over as soon as possible.

Blessings
Alex

[yorkieville]

I finished week 3 on Sunday, evening, and it is still stinging just as badly.

Plus, the lumps itch, and I've tried Benadryl oinment, and it doesn't relieve the itching. But, I do not scratch.

Thank you for sharing your experience with me.

Today a nurse called from shared Solutions to see how I was feeling, and I told her about the stinging, lumps, itching. And she said while they are normal side effects, she felt I should manually inject, and slowly let the Copaxone go into my system.

So, tonight we are trying it that way.

[yorkieville]

Hi, Deb.

I'm glad to hear that the stinging did go away for you. I hope it will for me, as well, but if not, it's just something I will have to accept.

On the advice of the Shared Solutions nurse, I am going to manually inject, and allow the Copaxone to enter my system slowly. It does go in very quickly with the Auto-ject.

Thank you, I intend to stay with it.

Hugs,
        Sheila

[meg321]

I have been on Copaxone for 2 1/2 yrs, I still have the stinging, lumps and itching,  I recently had a nurse come visit and she changed my settings to a 4, I was using much higher like 5-8...I thought what I had was fat but she said I was thin.  My first nurse put me on a 4 and I changed it myself..

With the heat and following her step by step instructions before the injection, I really cannot tell the difference...

But I haven't  tried to manually inject yet..let me know how that works for you, please.

thanks, meg

[jensequitur]

Manual injection is a little hard to get used to.  I used the autoject all the time I was on Copaxone.  But I had to inject my blood clot medication by hand, and they didn't have an injector.  It's really hard to stick the needle into your skin, but it's really not painful.  (As long as you pick a fatty spot!)  

I used a cold pack, which kept the stinging down, but I think it also encouraged me to ignore the area.  I ended up with lipoatrophy, which led to the IPIR, so I had to stop taking it.

[yorkieville]

Well, we tried the manual injection just one time and it was miserable. I don't mind injecting myself, because I did it for two years on Forteo, but my husband knocked the syringe out of my hand before I was finished.

Unfortunately, at 5'2, 71#s, I don't really have any fatty areas. (:

I'm back to the Auto-ject, but after only 4 weeks, I am covered with itchy bumps. I use Benadryl cream, (extra strength) on them, but it doesn't stop them from itching.

I don't think my MS Specialist will keep me on this medication when she sees me in February.

Sheila

Sheila

[meg321]

Does anyone know of any better choices?

meg

[jensequitur]

Ouch!  That's one thing that just horrifies me - I'm always worried that something will happen to jolt my hand before I'm done injecting.  (Speaking of which, I'm due for another tonight.)

Well, itchy bumps are par for the course.  After about three months, your body will become used to the itchiness, and will stop welting quite so much.  But this is only true with areas you've already injected.  If you start a new area, then it'll happen all over again.  My main problem was that I would scratch while I was asleep, then I'd end up with a weird looking welt.

After I stopped taking Copaxone (IPIR that turned into an allergic reaction) I switched to Betaseron.  I'm one of the lucky ones that doesn't have the flu-like reaction.  I also only take Betaseron every other day.  (Which actually makes it harder to remember to take it!)  

If you can't do Copax or Beta, there's Avonex and Rebif, but those are both intramuscular, which means a real injection.  Then there's the oral medication (Gilenya) which has just come out.  The insurance companies may not support it yet - give them a minute to catch up.

[meg321]

I forget my copaxone almost 3 times a week now and I have tried everything to try to remember it...makes me crazy.  Copaxone doesnt seem as it it could be forgettable.  Still trying !

Also, there are times when I just drop my injector, and if can already be in my skin.  I drop a lot of things now, including my curling iron when its holding my hair.  I swear a lot !!

hugs, meg

[jensequitur]

Yup, if you're having trouble holding on to stuff, change your  habits.  Plastic cups, no curling irons (or regular irons) no fragile stuff, and no manual injections.  The auto injector is hit or miss when I'm having trouble.

[sllowe]

Hi Sheila!

I'm not on Copax, but I went to an amazing Teva seminar for newly dx'd patients and they had a dermatologist speak. The doctor spoke about side affects like you and so many others experience.

What he said was that the med needs to be injected into the sub-q layer, and that many patients who are thin feel they need to adjust the needle due to this and they end up injecting into the wrong layer and that causes two problems...

1) causes the majority of side affects like lumps itching, etc.
2) the medicine is meant to work through the sub-q layer, not the epidermis or dermis so it will travel as it should

So, not only is technique important, hitting that sub-q layer is basically crutial for mechinism by way the med works. He said even thin patients he recommends an adjustment and I can't remember the number. But, that number is what he recommends all start out on.

Did a Teva nurse come out for your 1st injection? If so, can you call he/she to come out for re-injection training? Mention you have concerns you may not be hitting the sub-q layer?

-Shell

[COBOB]

I have been taking Copaxpone for over a year and it is very rare that I get any welts.  I do itch for about 30 min.  Then again, I do not use the autoinjector.  I use the techniques for sub-q injections that I was taught over 30 years ago as a Navy Corpsman.

Bob

[meg321]

I have changed most things I use, my water and coffee mugs are made by Contigo, If I drop them , they do spill and I have not had one damaged either.

One day this week I asked my husband to give me my copaxone injection, that works if he happens to be home.

meg xoxo