Ms. No Treatment is going on Copaxone soon!

Hello.  I was convinced here in the forum that I should start meds.  And I saw another doctor on Friday and I think I am going to get on Copaxone within the next two weeks.  I was just wondering if anyone can tell me a little bit about it?  How is the first time?  Am I gonna feel sick to my stomach?  Is the needle bad?!!  Anything anyone can tell me to make it a decent experience?  I am a bit scared of giving myself an injection everyday.  What am I going to feel after?  Should I plan to stay home for a few days? Can anyone help? Any advice will be appreciated.
Thank you all.

[gooddays]

Hi, we have not met, but I saw your post and looked at the Copaxone site to give a bit of information.

I am not on Copaxone I am on Avonex, which is weekly.  I read that the side effects are lumps, redness in the area, flushing, chest pain, but they do not last a long time.

On your first day of injection, you feel anxious and ready to get it over with to see what happens.  Make sure that you have your group support with you.  Because Copaxone does not need to go all the way to the muscle, I think that the needle may not be that big or thick that you won't be able to handle.  I have not heard of people staying at home for days after their daily shots.  Unlike Avonex, Copaxone does not have flu like symptoms, but even with the symptoms after my shots, I did go to work the following day.

Just think that even though you have to do it on a daily basis, it will improve your chances of having less relapses and your condition will not progress as fast as if you were not getting any treatment at all.

I hope I have helped you even if it is a little.

Good luck with your shots!!!!!!!!

Zulma

[Lulu54]

Hi AM,
You should see the smile on my face - I  am so relieved to hear that you are joining us copaxone users.  Using a DMD really is the best option those of us with RRMS have to keep this monster in check.

As for the copaxone, there are  a few things you should expect - the Shared Solutions nurse will train you for the injections using the auto-inject pen.  It is fairly goof proof, and the most important thing to remember is if you have any questions the SS people are just a phone call away.  Yes, they can be pretty condescending at times, but they also know their product and are good at telephone counseling.  There is a nurse on call 24/7 if you need a professional.

You may want to invite someone to sit in with you for the training.  It probably won't be necessary for anyone else to administer your shots, but it is good moral company.  My adult daughter set through the training and after the SS nurse left we had a good laugh about it all.  I did my first injection with the nurse in my stomach.  She had just said i Had to avoid scars and such for the injection.  When she saw all the stretch marks on my stomach, she exclaimed "my, you do have a lot!" to which my daughter immediately told her she was a very large baby and it was her fault I have those. Good thing my ego isn't fragile.

My first couple months on copax the injection stung - not gentle like a bee sting but that deep painful sting like a hornet or wasp.  Eventually the SS people suggested I set the auto-inject pen on a setting of 10 and the pain went almost entirely away.  Many people use a warm compress on the injection site prior  to the shot.  I didn't do that and just used an ice pack after the injection.  The ice really stopped the discomfort in 5-10 minutes.

The SS nurse who comes to do your training will go over all of this with you.
I am heading into the 4th month on copax and it is now just part of my nightly routine.

The good news about your DMD is you have picked one that has few side effects - a lot of people choose the others because of their neuro's preference or they would prefer  to do only a weekly or three times a week shot.  The copax does not make you ill with flu-like symptoms.  The copax does not affect your liver so you don't need to have regular blood screening.  The copax does not cause depression.  All three of those are possible side effects with the interferons but not copaxone.

You will probably not feel the needle at all - it doesn't go in deep - it is just under the skin and not into the muscle.  The discomfort you are going to feel is your body reacting to this foreign substance.  And your body will get used to it.

You will not need to stay home unless you want a reason to play hookey from work! :-)

A lot of this has to do with a positive attitude, which I know you have.  You want to have control of your life, and the copaxone is going to help you with that goal.  


Don't be surprised when the auto-inject pen arrives and then the actual drugs arrive that you feel like you've been punched in the stomach.  It is truthfully a reality check when it shows up on your doorstep.  Be sure and let us know when the stuff gets there.

Again, I am so glad you are joining our club.  If you have any questions at all, please ask or call SS.

Stick with it,
Lulu

[Lulu54]

The nurse was not in my stomach, the first shot was!  

[Deb61]

I've been on Copaxone for a year now.  The pain when you start is just like what Lulu described.  Everyone on Copaxone has their own technique--the one that works for them.  After a while I found that the Autoinject pen didn't work for me--the medicine went in too fast and pooled under my skin.  I give myself manual injections now.  After first, my husband gave all my shots.  Now, he gives about half of them because it gets rather mundane doing it by myself.  I use a hair dryer to warm the skin (and to dry the alcohol off) before I inject.  Sometimes I don't even feel the injection at all!  There are spots on my body that is more tender than others--those are the ones that my husband does (the upper part of my legs).  

I've only had the after injection reaction about two or three times and it wasn't as scary as what is described in the literature for me.  I know everyone is different, as their bodies react differently.  My face flushed and my heart sped a little bit.  My breathing was faster--like I had been exercising.  However, it didn't last but two minutes and I was fine.   It wasn't as nearly as scary that I thought it would be.

I love Copaxone because there's no flu-like symptoms and I have reaped the benefits of this drug big time.  The only thing about this drug is that it takes a while to really start benefiting you.  It will more than likely take about 9 months to a year before you'll notice any improvement on your MRI.  For me, not only did I see improvement on my MRI, but many of my symptoms disappeared.  I don't know the medical reason behind this, because I thought it just prevented further relapses, not get rid of symptoms, but I've noticed improvement.  My optic neuritis is gone and the horrible pain in my feet is gone.  I've started exercising again and I'm gaining some strength back.  

Best of wishes, fellow Copaxonater!
Deb

  

[Heather3418]

What Lulu and Deb have told you is right on.  I too, am a Copaxone user and have been injecting for a year now.  I've been through a tough year with stress, due to my father's death and I would have expected a relapse, after that.  Nothing.  Just a temporary increase in old symptoms.  So I DO think the Copaxone is working.

It doesn't help with the symptoms, from what I am told by the nurses at Shared Solutions.  Copaxone is to help slow down the relapses and progression of the disease.  And that is does.

I cannot add anything to the injection site reaction advice, you got from Lulu and Deb.  I too, have some areas that are more sensitive than others.  And if you can tolerate it, manual injection is the way to go.  The needle is like an insulin needle.  Very small and very small around.  Shared Solutiions just started with a smaller gage needle, which should help reduce injection site reactions.

The back of the arms, seem the most sensitive place for me.  I have tons of stretch marks on my lower abdomen from my big babies, but just try to avoid injecting right into one.  The skin is very thin there.  With my belly looking the way it does from having babies, this is not an easy task.

I can add, as you get further along in your treatment that some injections will not hurt at all, but you seem to still have a small bump, where you injected.  I do not use the alcohol prep at all.  I give myself the shot after my nightly shower when my skin is clean.  I have much less skin reactions when I don't use the alcohol prep.  My Neuro okayed that method, although Shared Solutions would probably have a fit.  If you use alcohol, use a sterile piece of gauze to make sure that the area is COMPLETELY dry.  It hurts to inject rubbing alcohol below the skin.  No need it making things worse, right?

Sine Copaxone is good to be out of the frig for 30 days, not in direct heat or light, I take about 10 of my shots out of the frig and have them on my desk to stay at room temperature.  As I get down to about two shots left, I get another 10 shots out of the frig.  That way I am never injecting medication that is cold.  Even with the shots I take out of the frig, I warm them in my closed hand for about 10 minutes before injection.  It really helps.

Once you get over the fear ( which is normal ) it becomes old hat and you don't really think about it anymore.  You just do it.  Since I use to take Avonex, I was relieved when I had NO reactions from the Copaxone treatment at all.  Just the injection SITE reactions, which get better with time. (Never inject in the same place twice in a 7 day period.  Better yet, don't hit that spot for about 10 days.)  Use the book that comes along with the injection package to keep track of your injection sites.  It's easier that way.

We are here for you dearheart.  You know that.  Trust us when we tell you that the fear will go away.  If you had diabetes, and had to take insulin, you would do the same thing....you would just DO IT.  Your health is paramount.

Well I DID say that I didn't have anything to add to Lulu's and Deb's advice.  Guess I can't keep my big mouth shut.  Sorry Lulu and Deb.....

Big Forum Hugs,
Heather

[nncdalton]

Just like Heather Copaxone took me through the care and loss of my mother. I love the treatment. The shots are not too bad in the areas that there is more fat but in my arms and the top of my legs they sometimes hurt. I do my shots manually and I get better results. I used the pen for almost a year but my pen malfunctioned and I had to give it to myself and I liked it better. Don't push the meds to fast though. Glad you are getting treatment! This is a good thing.

Christy D

[Heather3418]

Christy, I guess you already know that you can get a new atuo-injector from Shared Solutions, if you ever need it for those hard to reach places.

I'm sorry about the loss of your mother.  Sometimes I wish I could just pick up the phone to call my mom or dad...just one more time.  I miss them both...  I know you miss your precious mom, too.  Again, I am so sorry for your loss.


AUS-I also think Christy meant not to push the medication in too fast when you inject.  Slow and steady does the trick when you self inject.  Even the auto-injector injects kinda slowly.

Maybe using the auto-injector will be okay with you.  Many people use it exclusively.  When I want to inject into the back of my arms or my posterior, I let my sweetie do it.  I think it's good for him to be involved anyway.  It's a little thing he can do for me, in my fight against this disease, beside being there for me in other ways.  Just as I would do for him, if the roles were reversed.

With Copaxone you do not need to take any Tylenol or Aleve type products, like you have to with Interferon products.  I am not poo-pooing the Interferons, Aus...they work well.  Just a different kind of DMD all together, than Copaxone.

CHRISTY-glad you are doing well on the Copaxone.  I sometimes would like to take a break from everyday injections, but know that I am doing what is best for my body.  In a year of taking the drug, I have only missed two shots.  That's when I was in another state to bury my father.

All the best ladies,
Heather

[Lulu54]

Everyone,

Thanks all for adding your experiences - the hairdryer is a great tip for warming the skin.  I will eventually get to doing the injections without the autopen but for now it gives me an added sense of confidence.  

My neuro told me this week that the goal with the copax is it will retrain my immune system to stop attacking ........  and he talked about the possibility in a year or so of maybe reducing my injections to less frequently than daily.  

be well all,
Lulu

[Quixotic1]

I am glad that you decided to take control of this disease.  I did a lot of thinking about which med whould be the best for you and I agree, Copaxone sounds like the best choice - with your history of depression.  The interferons can cause depression.

I think you will do fine with the Copaxone.  You are stronger than you give yourself credit for.

I want you to be aware of a reaction that is possible on Copaxone.  About 1 in 8 people get it and it tends to happen 2 or 3 months into the treatment.  This reaction is well known and it is NOT serious.  If it happens and you already know about it, then it will bother you less if it happens.

It is a reaction that happens right after a shot.  You may feel flushed, feel your heart pound and feel a heaviness in your chest or a little difficulty breathing.  Some people who didn't know about the possibility of the reaction were afraid they were having a heart attack.  The sensations last less than 15 minutes and the nurses at Shared Solutions can talk you through it.

I only bring it up because you said you have had panic attacks in the past.  If you know beforehand that it is not serious, you won't go into panic mode and can ride it out for the few minutes.

The chances are strong that you will not even have this reaction, but we had another member who did.  She refused all further meds.  If she had only known it sometimes happens, she wouldn't have been so upset.  Knowledge is strength.

Congratulations on your choice.  You'll do great.  We all had our little fears about it, even me and I am not at all squeamish about needles.

Quix

[Auspiciousme]

Wow..thank you all so much.  I really appreciate your advice and support.  IT HELPS ME A LOT.  I changed my appointment to tomorrow...and I will let you know how it goes.  Dear Quix, I am glad you told me about the reaction...and yes, I agree that knowing it in advance makes you tolerate it better.  I don't like the daily shots but I think because of my depression, Copaxone was best choice for me.  
Thank you again.  God bless you all my MS family!  

[charmed6418]

I've been taking Copaxone for about a year now and I wasn't excited about the switch from Rebif since this one is a daily injection. But Rebif increased my liver enzymes so that's why the switch took place. It also gave me flu like symptoms and I was extremely fatigue all the time.

Once Copaxone arrivd at my doorstep it was like the first time all over again. I'm sure no one likes injecting but if it helps live long productive lives, I say just do it. I was terrified of my diagnosis but my doctor and the nurses really help you through it. They were nice and informative. I used Rebif first and now Copaxone, both nurses were extremely nice, they made me feel perfectly normal and safe.

With Copaxone, I get a stinging sensation while injecting, I used to use the warm compress but I didn't see a difference, so I stopped using it. I take a shower and inject right afterwards. The skin is warm, clean and soft after your shower so its easier for me. I get the flushing and sometimes a shortness of breath but it goes away in seconds.

The good thing is you don't get the flu like symptoms and you don't need to take a few days off from work. I was afraid too at first but to be honest you don't get used to it because in reality your sticking yourself with a needle! I tolerate it. I don't doing this every night but I don't to suffer severely without it. Don't be afraid we're all here for each other. But trust, its almost problem free. I'm able to do more, versus Rebif.

Some areas may be tender than others, for me is my belly. I bruise, itch, swell and turns red badly. I don't use this area anymore, just my thighs, arms and hips.

[Charley123]

How timely is this!  I have a nurse coming this morning from Shared Solutions to show me how to use Copaxone.  My husband will be here as will my friend so that if I can't do the shot they can.  I woke up this morning wondering the same things.  If you go to the Shared Solution site they have a lot of info.  The nurses I've spoken to are really wonderful and reassuring.  I know, despite my anxiety, that this is a good thing to do.  The more I read about the good things that happen with this drug, the more hope I have for having a better life.
To all who responded, thanks so much for writing about what is happening to you with Copazone as it is helping every Copaxone-nubie think better about the whole thing. Charley

[HVAC]

Every time I do my shot. I feel I am fighting the monster. It is like my exercise and diet. I don't like them all that much either but its all about fighting the monster for me.

[hbananas]

Your descriptions of your training are marvelous.  When you clarified the comment about the nurse in your stomach, I immediately got a mental picture of Fat Bas*** from Austin Powers saying "Get in my belly!"

I'm curious about the change you made to your auto-injector setting to a 10.  Did that make the needle go deeper, or more shallow?  That wasp or hornet sting reaction level does not sound like much of a picnic.

[halah29]

I use Copaxone with the auto inject set on 4 since I'm quite thin and the higher setting was  hitting muscle with was painful.  It's easy...just a pain having to do it everyday!  I think I have pulled a muscle in my neck because of using the site on the back hip area.  Just remember to rotate site...I kept doing it in my legs and arms ...shared solutions said you have to rotate every area to prevent damage to the fat or something..so now I rotate everywhere.

[motherof31983]

im stating copaxone tomorow at 4pm.i am devistated so scared

[Lulu54]

Hi mom, you have posted this on a very old thread that many people won't stop to read.  I hope you will start a new discussion and tell us a bit about your self and the journey with MS.

I'm a copaxone user and so far my MRI remains stable.  You have to remind yourself that you are doing the best possible thing for yourself and your family by picking a therapy and sticking with it.

I hope you'll come around and let us help you through these next few weeks as you adjust to your new normal.

be well,
Lulu

[MelissaW33]

I'm really scared to take Copaxone as I've read several reports linking Copaxone to higher risk of Breast and Skin Cancer. I am deathly afraid of Cancer and I just don't know if the 30% less relapse rate that Copaxone has is worth it.
What do you all think? This is really causing me a lot of stress!

[MelissaW33]

I'm really scared to take Copaxone as I've read several reports linking Copaxone to higher risk of Breast and Skin Cancer. I am deathly afraid of Cancer and I just don't know if the 30% less relapse rate that Copaxone has is worth it.
What do you all think? This is really causing me a lot of stress!

[sllowe]

All - this is an older discussion.

MelissaW33!
Welcome to the forum! Can you copy what you posted here and use the green "post a question" button to start a new discussion?

I'm so sorry you are stressed about this - but many here on copax and can help you with that but they may not see you at the end of this old discussion.
-Shell