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560501 tn?1383612740

I have chosen Copaxone

Through much reading, I have decided to go with Copaxone.
Can anyone who is on Copaxone give me some of their insight on how side affects go, as well as anything else that may be of great info to me. From what I have read, it has the least side affects (sp), and do not have to keep close check on blood labs.
Draw back....injecting everyday.

Thanks in advance,
~Tonya
22 Responses
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1034549 tn?1255424613
Same here Bob...... I don't waste my time with the auto-injector. Too cumbersome and way to many steps.  I can control the depth and the rate of the injection much easier myself. Also if I use the *dart* method I do not even feel the needle.
Helpful - 0
1012981 tn?1322603293
I've been on Copaxone for 3 years. The only side affect I deal with is the site redness, bump and itching. I stopped using the autoject, I found that giving the injection without it is less painful. You don't have that spring slamming the needle into your skin and injecting the Copaxone at a fast rate. If you inject into a muscle and not skin tissue, you will be hurting big time.

Bob
Helpful - 0
776614 tn?1265822754
Happy I'm not the only 1 that has wasted a couple syringes... I'm on week 3 into taking the Copaxone! My hubby has been giving the ones in back of arms and hips, but then I try to do my legs/stomach. 1st one I wasted I thought I was doing it wrong and tried to pull it out of the injector/2nd time I forgot that BIG RED CAP! Duh... I'm happy you and others aren't having much injection probs, wish I was so lucky! The night the nurse came to show me the second the med went in I started throwing up, nose bleeding, and even started my period like a week early & the stinging travels way far from the inj site? The reactions are getting a little better, but not much... Wishing everybody a great day! Live, Laugh, Love
Melanie - 28 (for 1 more week/YIKES!)
Helpful - 0
1040373 tn?1273687488
Ha-ha I will have to sing that song to myself from now while I'm injecting :)

Last night's shot went better. It didn't sting while the medicine was going in but it did sting slightly afterward for maybe 2 minutes. I did waste 2 syringes though. That auto-injector has too many steps for my taste and I kept forgetting one. Oh well. Like everything, it will just take some getting used to.
Helpful - 0
1034549 tn?1255424613
Tonya and Lovemybostons,

Glad things are going well and that you both are in the right frame of mind to begin treatment.

The shared solutions help line is great and the nurses I have talked to are very nice and very informative. I made 2 calls so far. One was to see if it was safe to get the H1N21 shot and the other was my concern about the bumps and itching. I just wanted to make sure it was not an allergic reaction.

Also net time you call shared solutions ask about their copay program and ask for information about it to be mailed to you. Currently they have a program that PAYS your copay up to $50 as long as you use one of their preferred pharmacies to deliver your meds. I use curascript and they are one of the preferred ones and now my $30 copay is paid by them every month. There is no income restriction on the program. Now I have an extra $30/month in my pocket! Doesn't sound like much but when you pay $240/month in copays for meds like I do....the $30 helps!

Stay well

~Scottie
Helpful - 0
572651 tn?1530999357
Tonya and Lovemybostons,  

For almost everyone, their bodies get accustomed to the copaxone, and that burning - stinging feeling does go away.  I no longer ever feel that discomfort with my shot.  And my injection routine is down to about a minute, from start to finish.

A little pain and even less time is well worth the sacrifice if this drug helps to keep my MS in check.  

Last week I heard Wendy Baker talk about her copaxone injections - if you remember the latin dance- the Macarena, you can envision all those injection sites.  Pretty soon you won't need that calendar/planner either.  Initially it is helpful because your brain is trying to wrap around so many new ideas and it will keep you on the right body part.

My first shot was on a Friday and I did it in my stomach.  Often I stop and have to count through the days of the week to know where my next one goes - stomach,thigh, thigh, hip, hip, arm, arm ... is my own personal Macarena.   You will develop your own pattern too.

Congrats on getting started with your therapy -

be well,
Lulu
Helpful - 0
560501 tn?1383612740
WOW!  sounds like you did GREAT!
i am glad that majority of it went well.  So you did get the burning - stinging feeling huh?
i would rather have that though instead of the heart issues.  i think that would really freak me out!

\my nurse called me tonight to check and see if my meds had come in yet. But, they have not. Waiting on insurance. Should be by Friday or Monday at the latest (i hope).
And No. your post was not to long. I really appreciate ALL the info and honesty you are giving me about what to expect  :)

Take Care,
~Tonya
Helpful - 0
1040373 tn?1273687488
The nurse, my sister and I sat at the kitchen table. The nurse showed me everything in the Shared Solutions packet like a magnet, a quick reference guide for injections and a big binder full of info. They also send a yearly planner where you can keep track of your injection sites by day and list questions to ask your doctor. You can also list any concerns there for when/if you call Shared Solutions.

They also give you a handy little guide where you list which day of the week will be which injection site. You also write down which needle depth you will need each day for that particular site.

We practiced loading & unloading the auto injector. Did you already get yours in the mail from SS? I got mine quite a while ago, way before I got the meds. Anyway, then we practiced injection technique using syringes filled with practice liquid and these foamy-rubbery balls. You inject and then hold the device in place for 10 seconds while the medicine is pumped in and then lift it straight out.

Then the nurse felt all my injection sites and assigned a needle depth number to each site. I’m pretty chunky so my numbers are all 8’s with a couple of 6’s mixed in.

Then it was time for my actual injection. I did it in my right thigh. I don’t think I felt the needle go in but I did feel the medicine going in. It burns but it’s tolerable. I had a couple drops of blood but nothing that made me nervous. The nurse told me to walk around for a minute to see it that helped but it actually hurt less when I was sitting back down.

The area burned for I would say about 5 minutes. I did get a welt and the area got red & warm. This morning the area feels a little tough, not really like a welt, but like there’s something under the skin, if that makes sense. I didn’t have any trouble sleeping (I was worried it would hurt if I laid on it).

We did not use the warming pack that came with the welcome packet from SS. I will definitely try that tonight to see if it helps to reduce the size of another possible welt. The nurse said you can wrap a couple of ice cubes in a towel to use after the injection if it really hurts. She said not to hold it there for more than 2 minutes though because it could increase the possibility of a bump developing.

We talked about the possible “bad” reaction with the racing heart. I’m hoping it never happens to me but at least if it does I will be prepared. If it does happen she said to remain calm (yeah right), sit down and keep your head upright and it will be over within 15 minutes.

Some things she told me that were really important are to rotate the injection sites like they tell you. She said she met a girl who had literal craters on her legs & arms because those were the only places she injected. You can call a SS nurse anytime 24 hrs/day if you need someone to be on the phone with you as you inject or if you have questions.

The nurse said that you don't have to use the alcohol wipe if you inject right after your shower. I'm choosing to inject at night though, at least for now, so I don't feel rushed. Make sure the alcohol air-dries - don't blow on it - before you inject.

Overall, it wasn’t too bad. The whole thing was over and then I sat down and watched tv and felt just fine. I’m hoping as my body gets used to the drug I will have fewer side effects like the welts. It feels good to know that I can handle it though and I am doing what I can to prevent future relapses.

I feel like I have written a novel! I hope it didn’t bore you. Let me know if I can answer any questions. Don’t be scared. With the auto injector you don’t even see the needle. It actually makes you feel kind of powerful in that you can do these injections to help your body fight this disease.
Helpful - 0
1034549 tn?1255424613
Tonyad said:
"Scottie,
thank you sooo much for the heads up on the injection and alternating them.
What is with this bee or hornet sting feeling? This does not soiund like fun at all."

Tonyad,
Don't worry the only way to describe it is a bee sting feeling but not as bad and mine subsides within 10 minutes. Other forum members have given tips how they got over the sensation or minimized it i.e. no alcohol wipe or make sure the alcohol is completely dry, don't put the injection too deep, use the warming pad they send you, etc etc etc.

I will GLADLY inject myself daily and deal with the "bee sting" after the 6 months of living hell Rebif put me through by making my depression 1,000 times worse and sick with flu like symptoms 24/7!

Also remember, when giving the injection it is supposed to be subcutaneous. So when picking a site, if you can't pinch at least 1-2 inches of skin, inject with a 45 degree angle. Also remember to let go of the skin after you have inserted the needle and before you start pushing the med in. I am fat....so I can find lots of areas with 1-2 inches of pinched skin LOL

I truly hope this helps and feel free to send me a message if you need support or just to went. I have only been on Copaxone 7 weeks myself, but I am a good listener!

Stay Well

~Scottie
Helpful - 0
572651 tn?1530999357
Tonya,
This will become second nature after you do it a few times.

The needle Kathy is talking about is for Avonex, which is a much larger needle because those shots are given intramuscular (deeper). The copaxone is a subcutaneous shot - it is administered just below the surface of the skin.  There is a big difference between the two.

The support group is a good idea, but keep in mind that MS comes in all shapes and sizes and flavors and the people you meet at support groups might not be totally representative.  Don't assume that the people you see  with walkers or in wheelchairs will be you some day.  

The support groups are great - and I always get something positive out of attending.

And those spelling mistakes?  Relax, because we all make them and somehow we all make sense out of what those jumbled words really mean.  

Good luck with all this - the roller coaster ride gets calmer as time goes on.  And you are right, it is in your head, it's in mine too!

be well,
Lulu

Helpful - 0
560501 tn?1383612740
lovemybostons,

Please let me know how your injection today.  Pleae give me asll the details so i can know what to expect.

Scottie,
thank you sooo much for the heads up on the injection and alternating them.
What is with this bee or hornet sting feeling? This does not soiund like fun at all.

Deb,
Thank you for the warming of injection site tip :)
I will be sure to do this. and yes, my hubby will help out w/ injections also.

Kathy,
Calming music.......For sure! what a great idea!  that and maybe a xanax....lol
i did attend my first MS support group today through MS Society. Meet a bunch af great folks there.  They are a pretty active group, meeting once a month for formal meetings and through out the month for luncheons and get togethers.
they actually jus booked a cruise (7) days at a great price that sounds like a lot of fun. I may go...not sure yet.
I hope that you have a group to get involved w/ where you are.

thanks again for all of your informstion.
Take Care friends,
~Tonya
ps......OMG I just looked back at my post ans trhere are some serious errors in spelling. Way to ,many to fix. I apologize.



Helpful - 0
1040373 tn?1273687488
I'm injecting my first dose tonight with the nurse. I will let you know tomorrow how it went!
Helpful - 0
1034549 tn?1255424613
After an unsuccessful run with Rebif (side effects 24/7 and severe depression) I was switched to Copaxone. I have been on it 7 weeks now and NO flu-like side effects which is a relieve after my Rebif fiasco!

I do get injection site iching and bumps as well as the "bee sting" sensation for 10 minutes after. I can definitely deal with it much better than the Rebif side effects!

Word of advice.... to prevent the deterioration of the fatty tissue and *divets" rotate the injection site EVERY time. Monday is the back of my right arm, Tuesday back of Left arm, Wenesday is my stomach (left or right I alternate each week, Thursday is my right this, Friday is my left thigh, Saturday is my right buttock, Sunday is my let buttock and then the cycle starts over and even though I return to the right arm my injection is far away from the previous Monday's injection.

My sister was on Copaxone for over a year and only used her legs and now she has craters all over her thighs. So PLEASE learn from her mistakes and rotate your injections. Shared Solutions also sends you a magnetic chart you can hand on the fridge to keep track of the placements of you injections.

Stay Well

~Scottie
Helpful - 0
429700 tn?1308007823
I was nervous, too.  I've taken Copaxone since March 2008, and I feel like an old pro at the injections.  The longer you do the injections, the easier it becomes.  Also, the reactions to the medicine lessens too over time.

My husband does inject shots sometimes because he likes helping.  It really helped in the beginning with the anxiety, etc.  Nowadays, it's just nice to have him do it every once in while.  

I usually do use the alcohol, but I hear it's not needed.  I make sure it's completely dry, though, before my injection.  I accomplish this with a blow dryer.  This helps dry the area and also heat the area without the use of the gel pack.  When the area is heated, I can barely feel the needle going in.  

I would get training on the autoinject and injecting manually to see which way you're going to like best.  

Best of wishes,
Deb




Helpful - 0
405614 tn?1329144114
Tonya,

I've been going through so many emotions, too; I've only been diagnosed a few weeks.  Tonight I give myself my third Avonex injection (this needle is big!), am trying to relax and not be nervous about it.  

I set things up on my desk, turn on some calming music, and prepare my injection stuff, concentrate on my breathing.  It hasn't been bad at all.

I hope that your Copaxone injections go smoothly.

I think I'll look into finding an MS support group to go to; that sounds like a very good idea.

Take care,

Kathy
Helpful - 0
560501 tn?1383612740
Thank you all so much for sharing your personal stories w/ me.
I have to admit that I am very nervous about all of this.
Yes, I am very thankful for finally getting answers but I am full of so many emotions.

I thought once I had my dx....I would be good to go....with answers and validation knowing it's NOT all in my head (well it is kinda, and C-spine LOL). But It did not happen like that to me.....I guess I am one of the few that is going to go through the whole range of emotions.  Right now I feel nervous and anxious about the DMD med.

I did however find a local chapter through the MS Society to join for support and have my first meeting tomorrow. i think this will help me a lot!

Thnaks again for your info.

AND.....lovemyboston, Please keep in touch with me since we are starting dmd around same time. That way we can compare notes.

~Tonya
Helpful - 0
293157 tn?1285873439
I just wanted to say good luck with your DMD.. I can't give any suggestions or ideas as I don't take DMDs... I"m Dx with PPMS and don't take them.  

hope it goes well..let us know
wobbly
dx
Helpful - 0
572651 tn?1530999357
Mine used to be more like a hornet sting than a bee sting - then it just stopped.  Now I rarely have any reaction at all.  I'm with DV on giving up the alcohol swabs at home - I just wipe the area with water and it seems to have cut out the stinging too.  Completely!!!

Good luck with all this, Tonya.
L

Helpful - 0
667078 tn?1316000935
I have been on Copaxone since April. It is fine. I have what feels like a bee sting for twenty minutes after injection but I can live with that.

Alex
Helpful - 0
338416 tn?1420045702
Site reactions are painful, but they go away after a while.  The worst effect I've had is the lipoatrophy - I've been doing the thighs and stomach the most, and now I have these giant lumpy dimples into what used to be relatively smooth (if fatty) tissue.

The most important thing is to make sure you only inject into the fatty areas.  Don't stray from the top of the thigh, as I did - injecting Copaxone into the bloodstream will cause a vagus reaction.  These are no fun.

I would be back on Copaxone, but I can't afford the $75 a month for the medicine.  Maybe nextyear - we'll see.
Helpful - 0
382218 tn?1341181487
I have been on Copaxone since June 2008 after a brief, unsuccessful run at Rebif (had to stop as it increased my liver enzymes).

I thought the daily injection would be a hassle but it's really not.  Once I worked it into my bedtime routine, it became as automatic as brushing my teeth.  I missed doing my nightly shot on two occasions, just completely forgot.  Did them the next morning and got back on schedule the same night.  You just need at least 12 hours between shots.

The only side effect I've experienced is the site reactions, which are next to nil now.  The first several weeks I had large, red, sometimes itchy lumps like huge hives.  The size of a Canadian dollar coin sometimes.  Often it would leave a mark for several days and occasionally I had some bad bruising.  This has improved over time and don't bother me at all now.  Many times I can't tell where I injected only the day before, as there is no mark or lump.  It took a while to get to this point though.  

Make sure you alternate injection sites regularly.  Don't inject into a lump or reddened area.

The first several injections were painful, really stinging, kind of took me off guard as Rebif didn't hurt at all.  This sting comes from the medication, the needle itself is so small I don't feel much at all.

Experiment using the autoinjector and manual.  I've done both and neither makes much difference now.  When my husband does my arms he prefers the autoinjector as he is so squeamish about the needle.  I recently lost the cap of the device so have been doing them myself manually and it is really the quickest way to get the shot over and done with.

I don't use the alcohol swab when injecting at home, after a bath.  I do use them when I'm in hotels or other people's homes, as these environments have germs unfamiliar to my immune system.

Since starting Copaxone I've had one very brief episode of ON, that was almost a year ago (about 6 months after starting the med).  My condition presently is stable, which is a relief as initially I had a massive relapse in Sept 2007 with some symptoms lasting many many months, and had another relapse 6 months after that, before I'd recovered from the first.  Because of that, my neuro was considering a more aggressive approach (Novantrone) and I'm glad I tried Copaxone before going that route.
Helpful - 0
1040373 tn?1273687488
I'm glad you asked this because I am starting Copaxone this week too. Fingers crossed!
Helpful - 0
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