On Copaxone for 13 days and I have just about had it enough!

[Kenya]

I consider myself to be pretty strong and tolerant when it comes to pain but the huge welts/knots the size of two 50 cent pieces on EACH injection site is getting to be too much. They aren't going away fast enough so pretty soon I won't have anywhere to inject anyway. They itch, hurt and are down right unsightly! The needle is a breeze but the medicine SUCKS. I have said I would do whatever it takes to maintain my quality of life and have even given up many foods (I'm doing the Swank Diet) but this just isn't working. I should have known these injection wouldn't work for me because I have injection site reactions to every TB test I've ever had and I don't have TB. I think I calling my neurologist to tell him I can't take it...I give up...

[MarkLavelle]

I would definitely agree that C isn't working for you. Lots of people like Avonex, partly because it's only 1 shot per week. You should ask your neuro about the options...

[Cat Mom]

Hi Kenya, what is your shot routine? There are so many different things you can do to cut down on those nasty skin reactions. I have been on Copax since 2007 and it took quite a bit of trial and error to customize a regime that works.

Some people ice or apply heat to the area before injecting but I don't. Instead of using alcohol swabs to disinfect, I use baby bum wipes or good old soap and water, it cuts down the after sting. Pinch the site (a good pinch not a little one) and inject into the pinched fat. Immediately after, push down on the bump that forms for about 30 seconds, do not rub. Apply ice and then Benadryl cream or any anti itch cream.

I'm sure you will get some more tips from other Copax users, hopefully you will find some that ease those skin reactions for you.

All the best,
Jen

[its2much]

You can adjust

the depth of the needle going in - that may help

[sherp]

sherp

Try rebif it is only 3x a week. And many have little or no reactions.

[pjsSissy70]

Your singing my song Kenya. I get those reactions myself and some have been worse. Ive been on copaxone for almost 2 months, and Im ready to quit. But, I am giong to try and give it 6 months, if nothing changes I will change too. My neuro actually suggested trying solarcaine. Tonight will be my first night trying that.

[Kenya]

Thank you all. I decided to try to do the shot manually and it turned out much better. I will see what happens if I just use soap and water and do it manually tonight. I used cortizone 10 cream and it doesn't really help. Te welts are growing instead of getting smaller...I have been measuring them. I left a desperate message on my neurologist's message line so he will probably call Monday.

[bops_mama]

Today made day 8 on Copaxone for me...it STINGS and BURNS so bad afterwards and the knots and welts are wretched too...i feel your pain literally :'( hopefully doing it manually helps? Let me know...because ive been doing the autoject because i dont thnk i could handle SEEINg the needle..

[rainykatie]

after a month of very painful injections i discovered that i was injecting too deep, it is much better now that ive adjusted the autoject.

[Temagami]

I now take an allergy pill with every shot at night and then one in the morning to combat the painful itchy welt issue. When it stings after the shot, I mindfully practice breathing deeply and slowly- seems to help.
While I still react to the shots 10 months later, it is much better than the first two months. Got my fingers crossed for BG12 in the fall- oh please, oh please.

[mgoerke]

Hang in there...

I know this is awful, I've been there. On top of getting such a horrifying diagnosis you then have to start giving yourself painful injections daily. Not good for one's mental state.

I would encourage you to keep trying. With MS meds I found that the grass isn't always greener on the other side. I would honestly give anything to go back to the days of my daily Copaxone injections and my painful itchy welts and bruised skin.

I promise, you will get used to it and I found that over time my skin reactions lessened. What helped me was to inject right before I showered. The warmth of the shower lessened the initial pain. Of course warm showers also make my hands completely useless and my legs go numb, but I didn't feel that injection as much :-)

Keep in mind that Copaxone is one of the safest MS drugs re: side effects. Other than the injection site reactions, it's very benign. Whereas the Interferons can be rough. Rebif 3x a week, not fun. Go checkout the posts of people taking this drug. Flu like symptoms 3x a week is not a party. It is very effective and many people get to a point where they don't have the flu symptoms all the time.

Avonex....the injection hurts like you would not believe!! It goes in the muscle. Sure it's only one time per week, but man did I dread Friday nights. Then you get to have the flu all weekend. Again, this is something you can get used to if the drug works for you, and over time the crappy feeling isn't as bad. I got to a point that some claritin and advil got me through the next day just fine. The needled never stopped hurting like hell, though.

Both interferons have implications for your liver and can cause depression and fatigue. So...

Then there's Gilenya which sounds great because it's a pill, but people are starting to die so it's under investigation and it does have many side effects that you may not enjoy. Certainly easier to dose yourself and it is extremely effective and it may be right for you if needed to halt your disease progression.

I'm on Tysabri now. Easiest drug in the world. I go once a month for a two hour IV and I'm done for 28 days. It may kill me (i'm JCV+), makes you prone to all kinds of infections, messes up your liver and for me it has not lessened symptoms for disability one bit. What it has done is stop MS dead in its tracks for over 8 months. Nothing else worked for me. I continued to amass lesions and disabilities on Copaxone and interferon. I didn't even bother with Gilenya...I just went for the biggest baddest drug they had at that point and I will never regret it.

What I'm trying to say is that nothing about this stupid disease is going to be easy, but you are so not alone. Read and read and read the posts here and know that others have been or are in the same place with you. I do remembered those first weeks on Copaxone where I couldn't find a spot on my arms, legs and stomach that was not bruised.......there always seemed to be lots of real estate on my butt :-) I remember wearing a tank top in the summer and a friend asking me if my husband and I had a fight because the pattern of bruises on my arms looked like fingerprints!

I remember going through several bottles of benadryl spray trying to stop the maddening itch only to wake up in the morning with blood under my nails and scabbed welts on my legs. It did get better, I promise.

Just remember that I said earlier that I would give anything to go back to those days and stay on Copaxone if it halts your disease progression. You will get used to it.

Sending hugs and some anti-itchy thoughts your way,
Melissa

[maximumlite]

I would'nt be afraid to try Rebif, I've been on it for a year and only have had one site reaction and I think it was from the alcohol pad that seemed pretty dry when I used it. The only side effect I ever had is fever if I don't premedicate. I talk with several people who also take Rebif and have no side effects. Myself I hope it keeps working as I've talked myself out of Copaxone because of so many posts with those big welts.

I know it is a personal choice of what to take, but I would like to point out that you really never see any posts about people saying how much they like their shots, so we always seem to see the bad about them. We are in enough pain and it is not set in stone what we have to take let alone torture ourselves, so just give it your best try and if it don't work out give something else a try.

[woodstock]

I'm on day 13 of Copaxone as well. I've found that this week, the welts aren't lasting quite as long. I inject at night and make sure that where I've cleaned with the alcohol pad is completely dry. I make sure the medication is room temperature, that I am using a totally different place at the site than last week, and I use a mild heating pad on the site before I inject. I noticed that the needle drips a couple of drips of Copaxone in the autoject when the needle cap is removed and I use part of a cotton ball to absorb that and it seems to make a bit of a difference. I count to close to 20 seconds with the autoject before removing as it seemed to burn more when I was in a hurry to remove the needle at the count of ten.

The other thing I do is to immediately place pressure (not rubbing) with a cotton ball after injecting and I move around (walk if it's my thighs or hip; move my arm if it's an arm shot) for a bit after the injection. That itself seems to be lessoning the burn and the length of time the reactions last.

I hate, hate, hate injections but I would rather do Copaxone than face the side effects of the other meds on the market at this time. Try what folks suggest to see if anything makes a difference before switching.