Copaxone itching driving me nuts

[essdipity]

I've been on Copaxone almost 2 months. For the first several weeks the only reaction I had was moderately painful stinging and aching after the shot, lasting about half an hour, plus some tenderness at the site. Now that part is only 5 or 10 minutes. In the meantime, though, other reactions have REALLY set in.

The thigh area is the worst, but all injections give me big red spots, lumps, welts, and sometimes bruises, lasting nearly a week. This is all ugly, but manageable. The itching, though, is what I can barely stand. That starts a day or so after the shot and continues for 2 or 3 days. So I always have several areas that really want to be scratched. Yikes.

I take an antihistamine for airborne allergies, and that does nothing for the itching. I use Benedryl spray, which helps for a couple of hours. The Copaxone people have no other recommendations.

Because of my allergies I'm an itchy person generally, and my nerve endings seem to be hypersensitive. Sometimes it feels that my bod has issued to general alarm to scratch everywhere.

I don't plan to stop Copaxone so I'll just have to bear it, but I sure would appreciate any suggestions for dealing with this maddening problem. My body is trying to tell me something!

ess

[momoftwo385]

I have been on Copaxone for about the same amount of time and I have the same SEVERE itching!! It's horrible! I also have noticed that my nerves are over sensitive but no allergies. They have been trying anti histamines on me as well but it isn't helping and I cannot stop this itching!! My stomach is covered in bright red stripes and the weirdest thing which is new my wrist itches but its in the BONE it seems and nothing comes of it, no bump, red etc. ARG!! I don't know if Copaxone will be working for me much longer. :/

[HVAC]

Marketshopper,
  I hope you have mentioned the itching to your doctor. They might be able to prescribe something.

Alex

[marketshopper]

I also got itchy crotch a few days after I started on Copaxone. I thought this was a weird reaction but I really think it was related. I've now been on it about  6 weeks and I'm getting huge itchy welts like everyone else is describing here.

[HVAC]

I am sorry for your reaction. During the six months I would research other medications. It is important to be on one to slow progression. Progression can happen with or without symptoms. Before the medication there were alot more people with permanent disabilities.

Alex

[jensequitur]

It does sound like an allergic reaction. I had a really bad one after my last IPIR, and itched and swelled up all over. I had to discontinue the medication.

[ftddodger]

I have the same problem.  About a month and a half in I started itching horribly not necessarily at the injection site on my feet, arms, legs etc.  If is driving me crazy Shared Solutions said they have never really heard of this and suggested itch cream (seriously over my entire body?) I saw the post earlier about Singulair and luckily I had some but that doesn't help either. I basically live on benadryl which is hard while trying to work and not fall asleep.
I just spoke to my neuro office and the doc said stop immediately before it gets worse.  Seriously if it weren't for the itching it has been the best med so far without all of the nausea and other side effects.  I have decided that I am going to go off all treatments for about 6 months or so and see how I feel, have another MRI and check for progression.  I'm not sure how much more of this "trying" medications I can take

[Deb61]

This is an old post, but I've been on Copaxone since 2008.  Some itching after the shot in the first several months is pretty common.  I no longer have any injection site reactions at all (including the itching).  It's been a great drug.

In the middle of January, the medicine will most likely be approved to be offered 3 times a week at double doses.  I'm supposed to contact my neurologist February 1st to see about getting the new treatment option for Copaxone.  My neurologist told me that the efficacy is the same, I can still get the co-pay assistance as it is still the same company, and it's the same drug.  

[loverofbrd]

I too was having the same symptoms, but have been using a deeper needle depth and that has helped so much that I never have the itching anymore.  Maybe it's the fact that I've been on Copaxone for about three months, but I really think the deeper needle depth makes it so the medicine is not just sitting under my skin causing the itch because it immediately got better when I started using 6.5 - 8 depending on the area.

[kimas]

I have been on Copaxone for about two months.  I have horrible, horrible itching and red welts like many of you that last for 2-3 days.  It is driving me nuts.  I spoke with the Shared Solutions nurse that did my in-home training for the injections and she was not able to offer any real solution aside from the OTC creams, which don't work.  I read that a mix of two parts baking soda and one part water helps relieve itching - as a homeopathic remedy - but I have not tried it.  I called my neuro today who is one of the foremost MS doctors in the country and his suggestion (through his nurse) was Benedryl pills so basically he was able to offer no solution.  His nurse also suggested witch hazel (which is essentially a Tucks pad).  I haven't tried it yet, but I am going to.  I sure hope that this itching subsides in the next few months.  Also, the FDA is currently reviewing a double dose of Copaxone to be taken every other day, instead of every day.  My doctor's office believes that the FDA will approve this in early 2014.  I have heard that some doctors already allow their patients to do a double dose every other day.  I really hope it gets approved for every itchy person's sake!

[Becster1971]

I too have itching, welts redness and bruises.  Drives me nuts too!  Right now I'm using Caldyphen (Calamine Lotion) it seems to work on the itching.

[babyemma85]

I often get itchy sites the same day after injecting, but i also get random areas that itch like mad, i have scabs on my leg that ive caused from scratching but the more worrying one is in the pubic region - Bit like shaving rash but it drives me nuts - Does anyone else get this? I took myself to docs just in case it as something else but all is fine, just wondering if its only me??

[twopack]

Hi Warren.  Welcome to the community and congrats on keeping up with your fight against the MS nasties.  

I think one of the best ideas we've heard around here to help stop Copaxone itch came from a member's MS neuro.  He suggested Tuck's pads.  They're disposable witch hazel pads normally used to treat hemorroids.  Generics are cheaper of course.  Cotton balls (or make up squares) and a bottle of witch hazel are probably the best bargain.  I keep some in the refrigerator for the occasional injector stinger but we've used them for bug bites too.  Results were best when I plopped a small ice bag on top for a few minutes - witch hazel a la mode ;)

We've had quite a few discussions about Copaxone and injection reactions around here.  I'm including links to three of them but you'll find others if you enter your search criteria in the "Search this Community" area toward the top right of any community page.  (Don't go all the way to the top or you might plug into the "Search MedHelp" area. That's a bigger library than most of us want to tackle.)

http://www.medhelp.org/posts/Multiple-Sclerosis/Injection-site-reactions--can-you-tell-me-if-this-is-normal/show/1354717

http://www.medhelp.org/posts/Multiple-Sclerosis/Injecting-Copaxone-into-arm/show/1418784?personal_page_id=781750#post_6481467

http://www.medhelp.org/posts/Multiple-Sclerosis/Copaxone/show/1432531

[Warren1959]

I've used Copaxone for 9 weeks now.  Lumps and itch are almost driving me loopy.  Shared Solutions has no advice except to say things are normal and should let up with time.  Maybe, but by then I may have no skin left at the injection sites.  Have used both manual and auto inject set at 5.  Same thing except the auto injector use starts the itch sooner as it's not as deep as the manual inject.

I used Rebif to start thing about 10 years ago and trust me on this, Copaxone is easier to tolerate.  Rebif, given another year or so would have likely done me in.  I went from 165 lbs to 119 prior to stopping.  Simply put I was too scared to stop.  I don't know where Copaxone will take me, if it will help or if it's just one of life's ugly tests but given the circumstances I feel I have to try.  I have a young family I love and care for.  If I continue to get more I'll I'll be of no use to anyone, not even myself.

Head down and one foot in front of the other folks OK?  If you do find something that works, aside from skinning yourselves, please let me know.  I could also use the advice.  Warren

[jdquiri]

Hello ladies, my name is jose. I just recently open an account on here. My mother has MS, and she is taking Copaxone. She first started taking it, but due to some complications (financially) she stoped. Thankfully she is back on the medication, but now instead of just having the itching sensation on the injection site, she is braking out with a rash all over her face and body. Have any one ever experience it?. Its driving her crazy, She is not allergic to anything, and for the pass 2 weeks it happens a few hours after she injects her self.

[meg321]

I had the itching and all the other site reactons and nothing helped but it is much better now..i have almost no reactions and it has been 6 months now.

IT REALLY DOES GET BETTER !!!

meg

[Heather3418]

What you are describing is what most of us taking Copaxone have experienced.  98% of us, have had all the reactions dwindle, as time goes by.  After almost two years on it myself, the welts, burning and itching, only occur rarely.  The itching now only lasts a few minutes and goes away.  I notice I will have the itching, if the shot had any burning with it.

I hope that you are in the greater majority and you find that as time goes by, the injection site reactions will lessen to where you barely notice them.  My own daughter will be starting Copaxone very soon.

I wish you all the best,
Heather

[waywardmuse]

I've been on Copaxone for about 4 weeks now and my pattern is the same as yours.  The itching and big red welts are driving me crazy.  Aloe vera gel helps but only last a few hours.  Haven't tried anything else yet.  I appreciate everyone's comments.  But I'm curious.  What kind of MS do you have?  I'm chronic progressive but they don't know if I'm secondary or progressive relapse, so putting me on Copaxone is like a shot in the dark.  I thought anything's better than nothing to try to stop the progression.  Initially they wanted to put me on Rebif but my liver enzymes were too high and they said the advantage to Copaxone is that it's not metabolized by the liver.  If I can't continue to take Copaxone due to an allergic reaction, don't know if there's anything else out there for me.  thanks again for your comments and any suggestions  

Judy

[charmed6418]

I have the same problem but it doesn't happen all the time. I notice it happens when i don't inject in a good spot or if i inject incorrectly. i've tried ant-itch powder and creams...no real relief. then i tried calamine lotion, none there either. i suggest before inject massage the area and bring up as much fat as possible. when you hit that muscle is when it really itches. also, ice packs relieve it as well.

[Quixotic1]

Hi, Tick, no you are describing a very normal - and quite mild - local reaction at the injection site.  What you are describing does NOT speak of an allergy to it.

Q

[cainer]

So-- sorry that would drive ne nuts!!  i dont know , but is that a sign of being allergic to it-- i itch some and a space about 2 in. is red but goes away- and that is hard 2 deal with  but nothing what you guys r goin through!!   wish u the best  tick

[Fluffysmom]

I'm glad this post was brought forward, as I'm about to decide to start on Copaxone, and I'm an itchy person.

I've found that the antihistamine Chlorpheniramine Maleate is very effective against my itching.  My PCP suggested it when Benadryl wasn't helpful.  I also take Singulair for my allergies, and she sees no problem with that.  I also give myself allergy shots every week.

I met a woman in a bookstore who told me that she uses an icepack before her injection of copax and a hot pack after, and it has reduced any injection-site reactions that she had before.  Funny, the conversations you can get in with strangers!

It's nice to be prepared ahead of time, and know I may itch.  

Thank you,

Kathy

[essdipity]

Michelle, I'm still here but Copaxone isn't. Not long after the all this happened I was visiting an old friend for the weekend. I was scratching like mad the whole time, despite using all the ointment, creams, pills, etc. My friend said, 'You have welts all over your arms!' and that was the only part that showed.

That somehow brought things into focus for me. I couldn't stand Copaxone another minute! So I stopped it then and there. It took many weeks for all the scars and marks to fade, but they finally did. In due course I started on Avonex, and have been on it for 16 months, doing well.

Although Shared Solutions denied it, the fact is that some people, a very small percentage, are just plain allergic to it. Since most everyone gets injection site reactions from Copaxone, though, I want to caution others that this doesn't mean they are allergic. It's all a matter of degree, and my reaction was way off the charts. My neuro agreed.

I hope you will start to do better on it, but if you need to change, remember there are other DMDs out there.

Best of luck,
ess

[michelleric]

I know this is post is a year old, but I could have written it.

Ess, do you still take Copaxone or did you switch to something else? I have been using Copaxone for about a month, the reactions started about 1 1/2 weeks ago. EXACTLY as you describe. Neuro says keep taking it, and I am taking Benadryl every day, the cream and pill.

2 days ago I tried not using the autoinject. Slightly better reactions. I think it is deeper and that is better?!

Just curious if u are still on Copaxone.
Thanks,
Michelle

[Momzilla]

Oh, my!  Things aren't sounding great.  I'm so sorry.

With regards to taking the Singulair and antihistamine together, I can understand your hesitancy.  I know that Singulair is not an antihistamine.  My son does take antihistamines with the Singulair when he's been around furry creatures, but I am not thrilled about it.  It may just get you through until the Singulair shows its full clinical effect, which I think usually is two weeks or so.

In the meantime, to calm your skin, perhaps you could try an oatmeal bath.  I know it sounds hokey, but we have many in our family with excema and it does seem to soothe and calm things down.  It may be worth a try for now, to give the Singulair time to work some magic.

It would be a shame to give up on such a wonderful drug such as Copaxone if you didn't absolutely have to.  I hope we can find a solution with you!

Feel better,

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