Copaxone...OUCH!!

[JJJ77]

Hi all!  I am not trying to sound like a wimp but can someone tell me if Copaxone injections get less painful??  I had my first dose yesterday and OMG it was terrible!!  I like the side effect panel of this med better than some of the others so I am going to stick it out but it really hurt!!  Also, if anyone has any additional information regarding the initiation of therapy with this medication, I would greatly appreciate it!  Thanks and I hope you all are well!!

[suganya28]

Hi JJJ77

It's good to see you are coping well. My aunt has MS and it's quite hard to see her suffer. She was on Copaxone as well and yes it used to hurt and sting and we alternated cold and warm packs to make it better. Our neuro suggested looking into Liberation Treatment and we did, here in India, and now she feels a lot better and her strength has returned and is able to do a lot more than she could! The treatment is still being researched but we took the risk and it's been good so far. You should discuss these reactions with your doctor, they may be able to tell you what to do. Good luck!

[twopack]

I'm into month four of Copaxone now.  I had some reactions crop up after about three weeks of injecting but it has pretty much settled down again now.  Some days there will be a surprise intense sting or welt but usually it is soon forgotten.

I have found that warming my thigh a little beforehand and following with an ice pack helps decrease the pain and other reactions that always seemed more likely to occur when injecting there.

I think I may have been more acutely aware of symptoms when I was newly diagnosed and just starting Copaxone treatment.  All my senses were on high alert then so it's hard to know if there were increased symptoms or I was just more aware of my odd body.

Mary

[JJJ77]

Thanks Lulu!  I appreciate the comments!!!  

I do have one more question...did anyone experience a bit of a flare up when initiating therapy?  I have some new strange symptoms and I am trying to decide if it is coincidental or if the therapy may be playing a cruel joke on me :)  Just curious if any of you have had this happen!  

[Lulu54]

Hi JJJ, It's good to read that you are taking an open mind approach to this.  Everyone does react differently, but I think almost all would agree it becomes better.

I am on copaxone, I had the hornet sting feeling for the first few months, but now I rarely feel the shot at all.  Recently I've noticed I have small lumps at the injection sites on my thighs and arms but not the other places.  They don't hurt and it doesn't bother me. The lumps are gone in a few days

The reason they don't want the injection being done in the same spot(s) like the stomach, over and over is it will erod the fatty tissue under the surface of you skin and leave permanent pock marks.

I hate doing these shots as much as the next person.  But I bet if I had diabetes and had to do daily injections, I would hate that too.  The copax is one of our best offensive weapons (same with the other DMD's) and the temporary pain and the bruising might well be worth it if it keeps us ambulatory and relatively healthy.

Good luck with this - give it some time and see if it doesn't improve.
be well,
Lulu

[JJJ77]

Let me first say that you all are wonderful!!  I am the type of person that tries to ignore the fact that I have MS as much as possible and starting the injections is a painful daily reminder that I am plagued by this rotten disease.  Not that I would wish MS on any one of you but it is very nice to have someone there who understands :)  Thank you for that!

Now down to the nitty gritty...the information you all have given is SOOOO helpful!  I am sure everyone reacts a bit differently so I am very appreciative of each comment!  I think I may try the deeper needle because yesterday my injection bruised for the first time....like black bruise!!!  Wouldn't you know it was the first time my hubby helped and he feels just terrible so thanks for the tip Leah!!! Today is the first day in the arm and I am a bit nervous but I am sure it will be fine!

Michelle, good to hear from you too!  Yes, Dr S decided the time had come....boo!

I will keep you all posted but I hope each of you are well and having a wonderful weekend!  Thanks again for all the wonderful advice!!

[lmeiser45]

I hope I didn't scare you with my post.  I do have to say, my body reacts to everything different than anyone else here.  It also reacts to almost every medication, so you probably won't have the same reactions.  I have found the deeper I inject, the less welting I get and/or bruising/itching.  The Copaxone nurse at my neuro was who suggested that one.  The "Shot" doesn't hurt, it's the medicine that gives the sting.  I found that the closer to the top of my skin I inject (4-5) the medicine builds up under the skin and doesn't disperse as quickly.  That is what caused my welts/itching.  So... the deeper I went, the less welts/bruising I had.  
Good luck!  The pain does go away with time.  Everyone else that I've asked, they all said 3-6 months, mine still stings a little bit, but now only really for a minute or so and I'm at 8 months.  It used to last 10-30 min.  So, I can handle a minute now.  It will get better.  I am the person who has the absolute lowest pain tolerance, so I hope this helps!

Good luck!!
Leah

[Tiredofbeingnumb]

Easier said than done, but try not to worry about it TOO much! I think everyone's responses so far just illustrate that everyone has an individual response to Copaxone. As for me, it was quite painful when I started, but it has most definitely gotten better. Some days I will get a mild sting (nothing like when I first started Copaxone) and then it will go away. Other times it will be a mild itch, and sometimes  nothing at all! Same goes with the injection site reactions. They've gotten better over time as well, although occasionally I will still get a welt. All in all, it has definitely gotten better for me. I've been on Copaxone for 10 months now.

There was good advice in preparing the injection sites. Shared Solutions will give you two of those gel packs, which, in the beginning, I put one in the freezer and one in the microwave (for a few seconds ,not very long, it gets really hot!). I put the hot one on before I was going to inject, and after I injected, I put the ice pack (which really seemed to help the pain/itch). Over time I didn't need them anymore.

Hang in there! It should get better!

[jean_619]

Cin--

Don't start worrying now!  Before I started my injections, I read lots of posts here where people were saying how bad their reactions are.  But for me I only get stinging for about 10 minutes -- and I don't have red spots, welts or bruises.  So don't assume you'll have problems--and just follow the advice here to see what helps you.

The best thing about the injector ... the needle doesn't hurt at all and it goes quick!

Good luck!

Jean

[cin68]

Ok you guys are scaring me.  I got my self injector yesterday and now I am waiting on the nurse to call me to set up an appointment to come show me how to use it.

Ren.....You know I will be calling you for support.

I have a question, does dizziness ever go away with this disease?

Cin

[lmeiser45]

I am 8 months into Copaxone shots and the reactions are just now starting to be a little less painful.  I only inject into my stomach which I'm sure some  people would freak out about, but the bruises and painful shots wouldn't stop.  I still have bruises from shots on my arms and legs from 2 months ago when I started injecting stomach and hips only.  You would think those bruises would be gone by now, but no.  When I talked to my neuro about injecting stomach and hips only, she seemed to be okay with it. I was told Hot packs, cold packs, but nothing worked.  One thing that did work was not using the alcohol pads.  When you inject and don't completely dry the area with alcohol, the alcohol will enter the injection site which makes it worse.  I was told that was fine too (as long as your not dirty - which I'm not).  That helped sooo much!  Also... to reduce bruising, she had me change the setting to 8-9-10 on the auto inject.  I've only had 1 bruise since.  Before when I wanted to get rid of bruising.. they told me use settings 3-4-5, nope, I got a bruise every time!  My neuro also prescribed me Lidocaine.  YES!!! That is the first thing that helped with the awful itching!!!    I hope this helps.  I wish someone would have told me to do these things when I first started.  I'm sure someone is going to say, "don't promote stomach only injections," but... what do you say when you have bruises all over your arms and legs.  I teach kindergarten.  I raised my hand to show them something and they all gasped at me and asked what had happened (like I had gotten beat up.)  The next day I had to bring in the book, "My mommy has MS."  It helped for some, but others still didn't like me having all the bruises which brought on a ton of parents asking if I was okay.  A lot of explaining, but... anyway... hope this helps!
Leah

[jean_619]

Another thing I forgot -- I've found that there is less stinging if I do not move that part of my body after the injection.  So if I shoot into my leg, then I don't get up and walk right away.  I stay put with my ice pack for a while.  I'm guessing that even though I don't shoot into a muscle, using the injection area right away might speed the meds when they go into the body.  I'm totally guessing now.  I just know that if I don't move that part of my body for a while, then it hurts a lot less.

[michelleric]

So good to see you!

So, Dr. S put you on Copaxone?  Well, I have had these reactions since I started, which I think was in August.  I have tried hot packs, cold packs, auto inject, manual inject, ALL settings, benadryl cream and meds. Not too much relief.  It is somewhat better, but still no great.

I just came home from a Shared Solutions Meeting with Mary (two-pack). We spoke with the SS nurse and she told me to rub down the lumps in the shower with a bar of soap 24 hours after injection. It worked for one of her patients. I will try it tomorrow. I stopped tonight and got a bar of soap.

I wish you better luck than I have with it, and hope you have a shorter time frame of your body adjusting to it.

Again, so nice to see you around again,

Michelle

[jean_619]

Funny I'm reading this now--as I'm about to prep my shot.  My nurse told me to put a warm pack on it for 5 minutes before the injection, and then an ice pack on it for 20 minutes after.  I found that the warm pack helped a lot.  If you call Shared Solutions (if that is where you are getting your drugs), then they will send you an extra pack so you  have one to make warm, while you keep the other one cold.

[JJJ77]

Thank you very much for your input!  Tonight's injection was no fun but didn't seem quite as bad.  I guess I was a bit more prepared :)  Good luck with the Rebif Linda!!  Hope you all are feeling well!  

[rendean]

Many members have said that the reactions lessen with time. I am a fair-skinned redhead so my skin overreacts to everything. I will say that the sting has lessened over time but the bumps are still occurring one year later.

As for the lumps, I was told by a Shared Solutions nurse that after 24 hours you may use warmth to the bumps/lumps and gently massage the area to decrease the size of the bump. I have found this helps some.

I have also found the site of the injection makes a difference in the amount of reaction, especially  my arms and thighs.

I hope things improve soon for you.  If not, call your neuro's office and report it .

Ren

[gypcwmn]

I did not like the Copaxone lumps the size of lomons, Awful itching, Painful injections. I took it for 6 weeks I could not sleep because the lumps and bruising were so painful no matter which way I laid i could not get comfortable.

Dr was kinda shocked when he saw the lumps and changed me to Rebif. I start rebif tomorrow. I know i could get flu like symptoms bet it will be better than what i had on copaxone.

May be i will be lucky and not get side effects. Keeping my fingers crossed.


                                                Good luck Linda

[HVAC]

For me the pain stayed the same I iced and did it while watching TV so I could distract myself.

Alex

[Csativa]

I also started Copaxone this week and I second the "OMG"!!!!!!!!!!!!  It stung/burned for quite some time.  The nurse who trained me said about the only thing I could do was apply an ice pack to the injection site.  I have read in a few sources that after one to three months, the pain does subside.

I was on alpha-interferon for several months for Hep C.  and it was horrible.  I would accept 10 times the sting to avoid interferon again.