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

[6-paq]

So sorry about the reactions/itching.

I don't have any real advice, but am watching your thread as my doc suggested Copaxone if I ever get a Dx (still in limbo).  I'm a very "itchy" person due to allergies too and that has already concerned me about what I've read of Copaxone.

What antihistamine are you currently taking?  Perhaps your doc can recommend another type that would help?

((HUGS)) and take care!  Pat :)

[essdipity]

Thanks for your comments!  I use either Loratadine (generic Claritin), or prescription Zyrtec. Can't tolerate diphenhydramine in pill form, which is what Benedryl and many other antihistamines are.

ess

[Quixotic1]

Ooooh, I hate to itch.  I wonder if Singulair might help.  It's a med with essentially no side effects.  It is a leukotriene antagnonist so it blocks one of the major allergic reaction chemicals.  It's often effective in chronic hives and allergies.

Might be worth a try to the extent that you are have an immediate type local allergic reaction.,

Quix

[Heather3418]

My Neuro told me that I may need to get a precription for anti-itch cream if my itching at injection sites continue.  It's funny that Shared Solutions didn't tell you the same thing.  They told me about the presciption anti-itch cream when I first started Copaxone.

I am having the exact same after injection symptoms that you are.  Word for word.  The itching for days after just wears on my nerves.  Especially worse on my thighs and the back of my arms...well for that matter, each one of my injection sites.

I wish I could remember what the cream was called.  I will try to find out, if you don't find out before I do.  I need to get a prescription of something.  The after itches are driving me nuts

I'm with you all the way....

Heather

[essdipity]

The OTC hydrocortisone creams don't work either. Maybe something extra strength will.  Shared Solutions only mentioned antihistamines. A big zero. I will be looking into Singulair per Quix's suggestion too. We sure need something! This is turning my whole body into one big jangling itch!!

Poor us!

ess

[6-paq]

You poor things!!!  I'm sorry!!  ((Hugs))

I hope either Singulair or perhaps an Rx strength cream will help you!!!

Take care!  Pat :)

[essdipity]

This is getting ridiculouser and ridiculouser. I decided to let the Copaxone folks have one more shot at solving my site reaction problem, and was politely told to ask my doctor! I pointed out that he would say that since Copaxone makes the stuff, they would be the most knowledgeable about side effects. Wrong, and too bad.

They do not recommend any specific product. They claim they are not allowed to by the FDA. These people are very big on calling you every whipstitch with useless 'how ya doing?' kinds of questions. And they ALWAYS remind you that a nurse is on call 24/7, etc. But what for? They don't DO anything. No, I don't want the nurse to come back and look at my welts and say yep, those are welts. As Zilla would say, Oy!

Itching myself nuts,
ess

[gollie]

Ess and All:

Guess its time to add to this thread. I had a thread awhile back
on the same issues with injection site reactions. I thought I had
it undercontrol, after the second visiting nurse visit and a new
auto injector.
Well that lasted about a week. Now I site reactions are double
as bad. They had me drop the needle level just below the 4
so its at about a 3 !/2 cant go lower or the med would squirt out.

but the welts on hip and thighs are getting to be as big around
in diameter of  at least 5 to 6 inches.and are not all the way gone
in 7 days time. not only do they itch real bad but they are very
very sore. the ones on my thighs even hurt when I walk. or when
the skin moves. (the one from 2 nights ago on my right thigh looks
exacty like the bulls eye rash from lymes.) scared the heebeejeebees
outta me when I first noticed it.
Have had brusing too. left some of the skin
areas a slightly dark color after bruises went away.
I went to do the right hip last night and still had 2 small lumps
there it made it hard to find a clear spot to inject. So I called
the copaxone nurse, and once again got the same old  same old
well, you have only been on it 5 weeks it could take several months
before the reactions calm down.

I do not, so far have any other reactions to it. But I am concerned
as I dont want to get an infection in the sites or worse.
So like Ess says, its the same old from them, of corse they dont
want us to stop using it, not good for business!!

And like Ess, I said no, I dont want the visiting nurse for a third time.
I am going to give it a few more days,  if it continues this bad, I am
going to have my nero look at the sites and see what he thinks.

I kinda doubt he will like what he sees.  I no I dont. but I also dont
want to give it up either. just dont want and infection or worse from it.

Can anyone tell me if the singular is perscription or over the counter.?

if its perscription, maybe i can ask my doc about it??

I hope for all our sakes we can get this worked out.
Really with this many of us having the same problems
and countless others, wouldnt it just make good sence
for this company to try to improve the injecton site issues
or are they just so  comfy with all the profit that they make
that they figure, just leave it at that.?????  Seems its a good
product, but could be greatly improved upon with at least
alittle bit of effort.    Sure makes me wonder.                         Gollie

[jensequitur]

Well, the good news is after a while of injecting in the same spot, the reactions will get less.  I regularly inject my stomach, hips, and thighs, and they aren't so bad.  I've recently started doing some new spots, and those itch like crazy.

The bad news is that you'll still have problems with redness and welting and lumpiness, even after you get used to the histamine reaction.

[monotreme]

Wow, I am really sorry you are all going through this.   The drug companies are up there with some neurologists who are good at being cold and dismissive.

This is just a thought as I would guess it is a reaction to the medication not the shot, but do any of you who use Copaxone think a numbing ointment would help??

There is a cream called "EMLA" which numbs the skin before an injection.  Allergists also use it to stop the allergy testing injections from hurting.    You put the EMLA cream on, then cover the area with saran wrap for about one hour, then take off the wrap, the cream is dissolved, and you don't feel your skin.

So it would make the injection and the sites pain free.  

EMLA and Singulair are both by prescription.  Family doctor can order both.
Elaine

[essdipity]

Well, I was still going nuts yesterday, so called my PCP's office. I figured that would be quicker, and it was. He knows me and knows I wouldn't do anything totally crazy, so he had 2 prescriptions phoned in. One was Singulair (this is prescription only, and no generic is available), and the other is a cream called Betamethasone D. That comes in a tiny tube and as we know the welts are huge! Also prescription only.

I'll have to see how they do and report back. The cream did nothing at first (apply twice a day) so that didn't bode well, yet the itching may need a lot to get it under control. If these don't work then I'm out of ideas, not to mention out of my mind.

And Elaine, I'm sure the problem is not the actual injection, but with an allergic reaction to the med that sets in later and seems to be building. The injection pain is a piece of cake compared to this.

ess

[Momzilla]

Oy!

Sorry to hear about your irritating annoyance!  Itching is so miserable!

I really think Singulair is a fantastic drug.  It's been a miracle for our oldest son with asthma.  It helps with his animal allergies, as well.  Our second youngest takes it, as well, for asthma/allergies.  It works in a way no other drug had before.  It stops (or at least inhibits) the allergic reaction before it starts.  

If I recall, it may take two weeks to build up in your system before you notice the full clinical effect.

I'm crossing my fingers!  Don't cross yours -- you still need them to scrrrrratch!

Hugs,

*

[jensequitur]

Actually, be careful with that scratching.  I still have red blood blisters from scratching too hard.

[squeezybear]

I find when I use the auto injector it leaves welts and itches more.  If you are using the autoinjector try doing it w/o it and see what happens.

[Heather3418]

I heard McB (Michael) say the same thing.  Do you have less injection site reactions without the autoinjector?  Please tell me all about it.  My body looks like one big welt since I started Copaxone in January.

Tell me MORE...thanks in advance.  All of us taking Copaxone welcome your advice.

Heather

[doublevision1]

I hope the Singulair and the cream work for you.

The only other thing that came to my mind as I read your posts is maybe a strong presciption-strength cortisone cream?  I used it once a long time ago for skin reaction from a totally different cause.  I was itchy like crazy all over my back and the cortisone started to work almost instantly and by the next day was resolved.  I don't know what the product was exactly; it belonged to my cousin and she uses it for bad psoriasis.  It was a potent dose as I recall.

GOOD LUCK!!!!

db1

[essdipity]

Glad I checked in here just now. The jury is still out on my various remedies. I was disappointed that the betamethasone D cream (presciption strength and supposedly very potent) at first seemed to do nothing. What a downer. It's to be applied twice a day, so I use it right after my morning shower and then later on. Hard to say now how good it is.

I've also now had 4 Singulair. It's also hard to say whether this is working, but maybe it needs time to build up. I don't know whether I can take a regular antihistamine too, since Singulair isn't helping my airborne allergies much. I hesitate to try both and don't want to dry out everything.

Anyway, in the early to mid-afternoon each day I've been getting wild itch sensations each day, regardless of meds.  These are coming at every recent injection site at once, so I have 4 or 5 places going nuts. This might be correlated to a certain number of hours after the injection, when everything sort of reawakens.

As to trying regular manual injections, I've done that. My Autoject thingie broke at one point and it was 4 days before I got replacements from Shared Solutions. No difference in site reactions.  Too bad!

I've also begun reducing the depth of the injections, and am now down to about 4 1/2 or 5. Don't think I can go lower. I seem to be getting fewer welts, but more large and very itchy bruises which last and last. Scratching even mildly around the sites causes bumps nearby that sometimes bleed or form scabs. Yikes. Am I nuts to keep doing this?

Well, the weekends are for thigh injections, and they've been the worst, so I'll see how that goes this weekend with the cream and the Singulair.

ess

[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,

*

[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

[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

[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

[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

[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

[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.