Copaxone

[jen673]

I have been taking Copaxone going on 5 months now.  For the last 3, I have had the itchy lumps for a day or two after.  I thought maybe they would get better but they really aren't.  The PA at the neurologist office said they probably wouldn't.  My question is this:  Should I continue to tough it out or should I switch?  I am curious from others if they have dealt with this and what they did about it.  The itching isn't that bad, it's the lumps that bother me the most.  I am worried that these lumps are going to build up and after time not go away.  Am I causing permanent damage to my body with these shots?  

Would love to hear your Copaxone stories!

Jeny

[jen673]

Twopack - thanks for that wonderful novelette! Lol.  It was just what I was kinda thinking, wait a year and see how my body adjusts.  I'm gonna try that witchazel for sure.  I think with all these shots we just have to weigh them and decide which is better for you.  For me, I want to give Copaxone a chance.  It's so comforting to know that it might just get better!  

You're right about finding the right depth for each area.  I haven't ventured out and injected without the autoject - SCARY!  I need to try it though.  Maybe it will help with reactions.

You know I've only had one flare and that's when I was diagnosed and I'm doing fine now.  It's hard to say if it's working but I hope so.  

Michael is right about this forum - YOU GUYS ARE AWESOME:)

Thanks for all the advice and stories!

Jeny

[Yankeesfan4life]

Wow twopack I am glad I opened this thread. I quit the betaseron 2 weeks ago, it was making life hell for me, everyday felt like i had the flu, the shots themselves didn't hurt, slight reactions to it, I had to mix the solution, but they were easier then the copaxone. I want my cake and I wanna eat it too, lol, copaxone shots are painful while and sometime after . I am trying warm compresses as someone, might have been you suggested, I was doing ice, the warmth helps bit more. I don't have itchiness or bumps, but i do have pain . The nausea went away taking the copaxone, it was bad with the Beta. I like that it is prefilled, bit easier, especially when I got the trembles and they eyes aren't focused all that great. I really appreciate this forum and all of you for your kindness and support, it makes things a bit easier to get though now, I felt very alone for awhile. My loved ones are great and they say they understand but no one fully can and i can't fault them for that, I am blessed to have them. Does anyone get very bad headaches and feverish being on the copaxone? Also, does anyone ever hear people speaking or music playing that  really isn't ....or have I truly lost my mind?
Michael

[Lulu54]

Everyone is so right with all the advice about  massaging the lumps - but I often overlook doing so.  

Jen is right about needing to manage the injection sites - it is important to rotate those site to avoid/slow the lipoatrophy.  Do you know that people who do glucose injections for diabetes also have this problem with lipoatrophy? It is not a problem specific to copaxone.

The immediate post-injection reaction is not linked to the lack of subcutaneous fat, in fact the researchers have not been able to study this problem because it is gone about as fast as it comes on.  Jen had multiple problems with this that few people encountered because the doctors and patients usually stop the copaxone if this problems occurs.  It may be that those problems may have been more related to an allergic reaction as she has mentioned here.

There are many of us who have used copaxone for some time and have neither the lipoatrophy or post-injection reaction problems.  Those problems are not as common as we might think. Even though copaxone is a substance modeled after natually occuring substances in our body, it can take a while for our body to get accustomed to these shots.  You need to give this several months for your body to acclimate.

I just talked to a coworker today who has had an allergic reaction to Nuvigil.  She saw a chemical allergist to work through her problems.  It was interesting because I have never heard of this specialty.  This doctor works through the allergic reactions we might have from the chemicals we are exposed to in place of a biological reason.  If the itching continues you might consider looking at this type of specialist.

best, Lulu

[jensequitur]

As everybody else here has said, the most important thing is to massage the lumps afterwards, and make sure you rotate your injection sites.  Warmth and benadryl cream will help the lumps reabsorb.

Honestly, the only reason I quit taking Copaxone is the lipoatrophy and the allergic reaction.  I didn't manage my injection sites all that well, and I ended up with a lot of lipoatrophy.  When there isn't enough fat at the injection site, you end up with an immediate post-injection reaction.  (Not enough of the injection went into your sub-cutaneous fat.)  Then I started having an allergic reaction along with the IPIR, and stopped taking it.

[Mip9030]

Are u using the autoiject? I found when I used that I had lumps because it was so powerful. When I injected it myself I rarely got lumps. Just a suggestion if u don't mind injecting urself.
-Michelle  

[jujuminx]

I have been taking copaxone for a year now and at first had some issues with lumps.  Kepted massaging them (wait 24 hrs) and in time the frequency decreased. Now it's rare if I get a lump.  

Mary's info above is great.  Good luck.

Julie

[twopack]

In case you didn't make it through all that....

here's the part about dealing with lumps.  It seems that's your biggest concern of the moment.

Are you massaging injection sites after 24 hours?  I don’t remember Shared Solutions stressing to do this but it really does help disperse the lumps.  REALLY!  I find this easiest to do in the shower while I’m lathered up and can apply pressure with my fingers or a smooth object but still have them glide across the skin easily.  (A bar of soap was suggested to me as a good massage tool in the shower but that was too drying for me personally.)

You don't want to massage injection sites within the first 24 hours because Copaxone needs to be allowed to absorb slowly.  But after 24 hours you want to break up any scar tissue that may be thinking about forming around the irritated tissue.  You are absolutely right! -- when left undisturbed too long there will be no saying goodbye to lumps later.

The message is massage.
Mary

[twopack]

So its stories you want, eh?  I’ve shared a few Copaxone stories around here.  Hope you don’t mind that I went back to one, copied it, updated and then pasted it here.  My brain appreciated the chance to edit rather than compose.  I apologize for any unnatural flow that may have developed in process.

I’ve noticed members here post a common pattern with Copaxone injection site reactions.  There seems to be an initial 'honeymoon' period that lasts a few weeks.  During that time, we each seem to think we are one of the fortunate few who aren’t going to experience much for site reactions.

Unfortunately, it appears our bodies use this time to ramp up defenses against Copaxone and/or the preservative contained in the solution.  [I met a long term Copaxone user once who had NO problems with injection site reactions UNTIL Teva tweaked their manufacturing to allow limited storage of the drug at room temperature.  I believe a preservative was changed or added at that time.  It’s convenient to not always refrigerate.  It seems the price for convenience of storage is to provoke site reactions.]

I can't remember exactly how long it was after starting Copaxone that I started asking questions here but I know it was within 2-6 weeks.  My first complaint was about itching of ALL sites (even those that were many days old) after I had experienced NONE of that initially.  I also started to have longer lasting “allergic” looking wheels, stinging and lumps that lasted a week or two (or occasionally three).

I was disappointed but continued with the treatment when this community encouraged me.  I was determined to give it my best effort to help my body fight MS.  I tried solutions suggested by Copaxone users on this forum and tricks I learned at pharmaceutical sponsored seminars.  Some worked for me (the witch hazel trick and a Cortizone-10 roll-on).  Others didn't.  As I worked on techniques to discover what helped me, I found that it felt better just to have my focus on what was working rather than how much I was reacting.

And then sure enough, as everyone had predicted, I noticed the itching (my loudest complaint) had disappeared completely after a couple of weeks.  All the other reactions also decreased over time.  By about the seven month mark few complaints remained (even though I’ll always wish injections didn't have to be part of my daily routine).  

I’ve been taking Copaxone about 18 months now.  Sometimes I get an unexpected reaction.  Sometimes I actually wonder if I got hold of a dud dose because I feel absolutely NOTHING.  Injecting is mostly a non-event.

It can take quite a while to tweak your personal injection technique and find exactly what depth works best at each site.  You MIGHT find that a slight change in technique will decrease reactions.

Are you massaging injection sites after 24 hours?  I don’t remember Shared Solutions stressing to do this but it really does help disperse the lumps.  REALLY!  I find this easiest to do in the shower while I’m lathered up and can apply pressure with my fingers or a smooth object but still have them glide across the skin easily.  (A bar of soap was suggested to me as a good massage tool in the shower but that was too drying for me personally.)

You don't want to massage injection sites within the first 24 hours because Copaxone needs to be allowed to absorb slowly.  But after 24 hours you want to break up any scar tissue that may be thinking about forming around the irritated tissue.  You are absolutely right! -- left undisturbed too long there will be no saying goodbye to lumps later.  

Lumps tend to come and go now.  Some still tend to linger for some reason but they aren't noticeable to others (at least nobody has commented) and they HAVE all disappeared eventually.  It must be so because each general area has received somewhere over 65 injections now and seldom can I find more than one lump per area when I massage.

I suspect this reaction can smooth out for you too.  Somehow it always seemed to improve for me soon after I went on a big complaining rant.  Maybe they really do help!!!  Sure hope so.

Right now my biggest problem is getting to the arm sites between the limited use of my hands and spasms that come from twisting my torso.  The auto-injector helps but I’ve had to resort to holding the syringe and getting hubby to “pull the trigger”.  He seems to like it.  Go figure!

At this point (if I were you and I most certainly am NOT) I’d try to give the Copaxone an entire year trial before considering a change **ESPECIALLY** if you haven’t had a flare.  It was around the taking-Copaxone-for-a-year mark that I realized I was feeling better than I had in quite some time.  Not ‘original normal’ but a manageable (almost comfortable) ‘new normal’.

She asked for stories and got a novelette.
Hang in.  Good luck.  You are doing great!
Mary


PS:  In case you notice from other places around the forum, I’ve had some set-backs lately.  I still think the Copaxone is working for me so I’m sticking with it until some docs and I can figure out more of what’s going on.

[Lulu54]

My neuro suggests using witch hazel on the injection site immediately after you do the shot.  You can buy Tucks medicated pads - yes, the ones for hemmoroids (sp?) - keep them in the 'fridge where they will be nice and cool.  You might try that and see if it helps.  

If you don't want to spend the money on the Tucks, you can but a bottle of witch hazel and keep a container of cotton balls soaked in witch hazel in your refrigerator.  It does the same thing.  
Twopack tried this tip and swears by it.


I have only one site that gives me fits - my right arm,  It causes pain up into my shoulder and down into my wrist- and it is bone pain, not muscle.  The MS RN told me to skip that site for a while and give the arm a rest.  I've been lucky with copaxone and have had very few problems.

good luck,
Lulu