When to draw the line with Copaxone?

[Kelsey.23]

I started taking Copaxone this past Dec. 15 after a trained nurse came to teach me everything about the injection. I have never missed one dose and always take it at the same time every night, just for the record.

Anyway, I understand side effects from the injection are itching, swelling, pain, etc. and this was no problem at all at first! Just a little swelling and burning.

When the end of January and beginning of February came along they progressively got more intense. Big welts, crazy burning, a little itching. NOW it's progressed so far to where my welts feel like baseballs are under the skin (size and how hard they become), the itching is so bad I want to rip my skin off (I have taken benadryl, used hydrocortisone cream), and the Copaxone burns so much I almost out of reflex pull the shot out half way through. I can even feel the welts on my legs when I walk it's so painful.

Also I can't even use a heat or ice pack afterwards because it is that sensitive!

My neruo said this doesn't sound like a developed allergy and to stay on it for now. Again, I understand reactions are completely normal, but how far is TOO far? I absolutely dread them now!

[Redwings]

Hi Kelsey:
When you're so miserable that you're considering skipping -- or actually beginning to skip -- injections, you've hit the line and it's time to start considering changing your injection schedule (some folks use Copaxone only every other day) or changing to a different med. The point of the DMDs is to try to improve your quality of life, not to detract from it by making you miserable.

All of the MS meds have the potential for unpleasant side effects, and sometimes none of the choices are good. But as long as there are options, it pays to try them rather than to struggle along on one med to the point that you're supremely unhappy and wanting to start skipping meds altogether.

[jcooper75]

I went through the same thing. I took Copaxone for about 4 months and in the beginning it was tolerable. I got the welts but they weren't that big and the burning subsided after a few hours. But the more shots I took, the worse it got. The burning, the itching (OMG the itching!!), and the swelling were out of control.
Finally my doctor took me off of it because it was beginning to break down the fat cells and leave bumps in my skin.
We decided if it was this bad now then it would destroy my skin within a few years.
I know they say it is a well tolerated medicine, but that's just not true for everyone.

I took C for 4 months and found that I was not only allergic to Mannitol (in most of the MS meds) but it was making my blood sugar crazy.

I was also experiencing the same things you were. I switched to Betaseron and pray I never have to try C again.

As always, you need to talk to your doctor and decide what is best for you.

[Luv2Worship]

Those were the same reasons I quit taking it! I do get the redness with Beta, of course, only on my arms & legs were everyone sees it, but since its every other day I don't use my arms anymore. Vanity won this round! Thank goodness I'm not getting the itchiness! If I could afford the $100 infusion center co-pay, I'd be back on Tysabri in a heartbeat! I felt noticeably better & no side affects, for me that made the risk of PML negligible.

[Kelsey.23]

I was actually wanting to talk to my neuro about Tysabri. I've already read a lot about other medications and that one seems to be great and would like to get my neuro's opinion on it.

The thing is with Copaxone, I ALWAYS rotate as I never wanted the skin problems and I have visible lumps down my legs already after four months.

[JennBird]

manual vs injector?

I started having the same problems but they subsided when I switched to manual injections. I'm able to inject a lot slower than the auto-inject and I pinch up a nice lump of fat to stick the needle into. I also iced up before the injection instead of after (but I don't even have to bother with that any more). Your side effects sound pretty sevre though. I agree, these meds are supposed to increase our quality of life, not make us live in dread... Maybe talk to your doc again? Shared Solution/BioScrip...? Good Luck!!

[Mamabug]

Hi Kelsey:
When you're so miserable that you're considering skipping -- or actually beginning to skip -- injections, you've hit the line and it's time to start considering changing your injection schedule (some folks use Copaxone only every other day) or changing to a different med...

Yeah. What Red said.

I had a similar experience -- in my thighs, arms and hips. My abdomen, for some reason, seemed to be able to tolerate Copaxone injections.

My MS Specialist agreed to let me inject 4x per week, and only in my abdomen. (Not enough sites, if I avoided the others, to inject 7x per week.) I try to spread the injections out as much as I can -- approximately 42 hours apart.

• Sat. bedtime
• Mon. supper
• Wed. lunch
• Fri. breakfast
• I'm not employed so this works for me. If you're gone on weekdays, the schedule could be rotated to put the lunch-time injection on a Saturday.

Have been doing this for 2+ years. Copaxone continues to be just as effective as it was when I began on daily doses. And, more effective than when I was previously on Betaseron for 5 years.

~ Faith

[getoutside]

I started Copaxone this month and am not liking it at all either. I did speak to a nurse at Shared Solutions and she says the company doesn't recommend applying cold for more than a minute after the shot. She said they believe it could cause more tissue damage that way. I had been leaving it on for at least five minutes. So I followed her recommendations yesterday and, so far, the injection sight isn't as itchy, red, and painful as my others. Hardly notice it.

I am going to try it again today and hope yesterday's wasn't a coincidence.

[HereIam]

Hi Kelsey, I'm sorry to hear you're having these site reactions to Copaxone, they sound horrid and also sound familiar. Everyone has given you good advice already, the only thing I wanted to add is are you being very attentive to rotating your injection sites?

I was on Copaxone for 4 years, and if I injected a site more than one time in a month, the reaction became wicked, like you are describing. So, I made a very complicated chart at the beginning of every month, indicating the location for each shot every day of that month, making certain to never hit the same place more than once.

I hope that this advice helps you.

[graybird]

maybe you arent injecting deep enough?i know if i dont go deep enough it hurts like the dickens

[DianeD]

Who knows; no studies on this.

I think Betaseron has Mannitol also. It is a common filler in the injectables.

I've read about this in many articles. I don't think Teva did any real studies regarding Mannitol allergy and frankly I don't know what the reason was for some of the people to drop out of the study.

Teva also doesn't have any studies for drug interactions. They conveniently didn't study that.

I have taken Copaxone for more than a year. From the beginning I felt awful. Not due to injections, that while unpleasant are tolerable, but apparently the medication.

I am not an expert, but I think this could be due to the Manitol.

Shared Solutions calls me and sends me literature, as if I were a dolt, to explain that Copaxone is not for improvement of symptoms, but just to halt progression. As if I didn't know that when I begin the treatment.

I always tell them that I became weaker, more fatigued, dizzy and generally felt lousy shortly after starting C. They just keep repeating the same mantra and send me more junk mail.

I'm sick of it.

I took C for 4 months and found that I was not only allergic to Mannitol (in most of the MS meds) but it was making my blood sugar crazy.

I was also experiencing the same things you were. I switched to Betaseron and pray I never have to try C again.

As always, you need to talk to your doctor and decide what is best for you.

[celloyogi]

The Shared Solutions nurse who came out for my initial injection training said, while it was not official company recommendation, a patient of hers (who also happens to be a nurse) found the only thing that helped with the massive itching was Lotrimin. Yes, the antifungal foot stuff. The patient tried it once out of desperation and it worked, so that's what she uses.

Worth a shot, right? (Sorry, I couldn't resist.)

[Mamabug]

Arnic-Gel. Can be found in health food stores.

~ Faith

[Lendi]

I agree with everything Redwings said.

I had horrible problems with copaxone too. I lost hair, my skin became very dry and then I started breaking out in a rash.

I had problems with rebif, to though so it could have just been me. I gathered the preservatives in it could be an issue.

I was able to stay on beta for much longer but then it too started causeing problems. There were no injections sites left that weren't red. It literally took months for the redness and swelling to go down.

I had such anxiety problems trying to give myself shots that my DH gave all of them to me. Then, we talked to a registered nurse to see if she'd be willing to let us pay her to give them to me.

Ultimately, I went on Ty and although I don't feel better like some I do feel mentally better knowing that I'm doing what I can to keep healthy.