lilc
10-13-2005, 09:05 PM
I called my neuro's office today to see how things were coming along for me to start Copaxone. Found out they filled out the paperwork yesterday. Now the insurance company and the drug company have to negotiate or something. Obviously I was overly optimistic 3 weeks ago when I thought it might all take 2 weeks! How long has it taken for those of you who are on the CRABs? (I'm not really stressing about it - who WANTS to start daily injections??? But in the back of my mind are the two MRIs 3 months apart. My brain seems to be a busy little lesion factory right now, I'm rather hopeful that we can halt production in the very near future!) :D
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gyrl293
10-14-2005, 06:42 AM
hey lilc,
I take Rebif and it 2 months for my first shipment to arive. I would give the Copax. people 3 or 4 days after the doctor submitted the paperwork then give them a call on the 1-800 number to see how things are going with the insurance company. Stay on top of it. Good luck =)
Blessing to you
Mari
I take Rebif and it 2 months for my first shipment to arive. I would give the Copax. people 3 or 4 days after the doctor submitted the paperwork then give them a call on the 1-800 number to see how things are going with the insurance company. Stay on top of it. Good luck =)
Blessing to you
Mari
orngcrayon
10-14-2005, 06:10 PM
My doctor and I decided on Copaxone, and just like you, the drug company and my insurance company had to talk and figure things out. After that process started, I got a call from the pharmacy, and had the meds delivered to me within 10 days.
And don't stress about it - once you're on the meds, you're on them for a while... so enjoy your injection free days ;) If you have any Qs, I've been on copaxone 3 months now and had some bad reactions in the beginning - but found work arounds. Good luck!
And don't stress about it - once you're on the meds, you're on them for a while... so enjoy your injection free days ;) If you have any Qs, I've been on copaxone 3 months now and had some bad reactions in the beginning - but found work arounds. Good luck!
lilc
10-14-2005, 06:12 PM
I'm delighted to report that the Copaxone people called me today! They are sending my autoinject and travel case, and they said they'd be calling in 2-4 business days regarding my insurance. They offered lot's of resources, including a Copaxone user to talk to. I declined that one since I have you all and one non-cyber friend who is using Copaxone. Still don't know how long it will take, but I'm comforted to know the process is moving along!
lilc
10-14-2005, 06:15 PM
orngcrayon, what time of day do you inject? Were your bad reactions the ones they mention or something out of the ordinary? (I'm actually trying to keep the possible reactions out of the forefront of my mind, trying to EXPECT the best, but be prepared if it doesn't go perfectly.)
orngcrayon
10-14-2005, 06:25 PM
When I first started, I was injecting in the morning. It's not like the videos say where you can inject in 30 seconds and go on with your day... there's pain for about 15-20 minutes as the medication disperses. So plan for at least an hour for the whole "shot process". I usually give the shot and ice for about 10 minutes, then just relax until most the pain is gone.
The biggest complication I was having was bumps - like knots under my skin. I call them my rocks because that's what they feel like. I get them at every injection site, and they're about 1" round. I knew this was a side effect, but what no one told me is that they HURT like mad! It hurt to lay down, sit down, to be touched... it was terrible. So bad I wanted to quit using copaxone.
I also had itching, redness and swelling at every injection site that lasted about a day. I also get bruises with every injection that last about a day. These are annoying side effects, but I could cope.
Anyway, my neuro prescribed an antihistemine (Zyrtec) that I take 1 hour prior to the shot to help with the bumps, redness, swelling and itching - and it did. No more itching, swelling or redness. I still get the knots, my little rocks at every injection site... but they don't hurt anymore. You can massage these knots 24 hours after the shot and they eventually go away.
The antihistemine does make me REALLY tired though, so now I do my shots at night.
The biggest complication I was having was bumps - like knots under my skin. I call them my rocks because that's what they feel like. I get them at every injection site, and they're about 1" round. I knew this was a side effect, but what no one told me is that they HURT like mad! It hurt to lay down, sit down, to be touched... it was terrible. So bad I wanted to quit using copaxone.
I also had itching, redness and swelling at every injection site that lasted about a day. I also get bruises with every injection that last about a day. These are annoying side effects, but I could cope.
Anyway, my neuro prescribed an antihistemine (Zyrtec) that I take 1 hour prior to the shot to help with the bumps, redness, swelling and itching - and it did. No more itching, swelling or redness. I still get the knots, my little rocks at every injection site... but they don't hurt anymore. You can massage these knots 24 hours after the shot and they eventually go away.
The antihistemine does make me REALLY tired though, so now I do my shots at night.
orngcrayon
10-14-2005, 06:41 PM
Oh yeah, I also wanted to tell you - if you're not afraid of needles, I really suggest doing your injections manually (without the autoject). I tend to have more bleeding, sweeling and general discomfort when I use the autoject, and other copaxone users have said the same thing. I do manual syringe everywhere but my arms, I have to use the autoject there because the backs of my arms were just too hard to reach ;)
And I remembered a couple of the other issues I had.
One was with tattoos - a few of my inejection sites are tattooed, which disrupts the medication dispersal. But most people with MS aren't too heavily tattooed :)
The other one was with autoject depth. At first I didn't have the setting deep enough, I was using a 4 instead of a 6 (the nurse recomended 4 because I'm pretty thin), and the medication was pooling right under my skin. It resulted in an area about 4 inches long that looked swollen - like a welt, and it was HIDEOUS - it looked like that under arm flab, only a hundred times worse. But when I adjusted the autoject to 6, that went away.
That's all I can think of - good luck, and let me know if you have any questions! I'm sure I forgot some stuff!
And I remembered a couple of the other issues I had.
One was with tattoos - a few of my inejection sites are tattooed, which disrupts the medication dispersal. But most people with MS aren't too heavily tattooed :)
The other one was with autoject depth. At first I didn't have the setting deep enough, I was using a 4 instead of a 6 (the nurse recomended 4 because I'm pretty thin), and the medication was pooling right under my skin. It resulted in an area about 4 inches long that looked swollen - like a welt, and it was HIDEOUS - it looked like that under arm flab, only a hundred times worse. But when I adjusted the autoject to 6, that went away.
That's all I can think of - good luck, and let me know if you have any questions! I'm sure I forgot some stuff!
lilc
10-14-2005, 07:58 PM
I watched the video and have read what folks say about autoinject vs "just do it"! Frankly the autoinject looks like extra trouble, and I like the idea of being able to control the plunger speed. But my neuro ordered it for me, I won't turn it down! I only have one tatoo (got it just a couple of years ago, at 46) and it is in the traditional upper arm location, don't think it will be a problem, but that is good to know. As for pain, I've been wondering lately how much I would notice additional pain, seems I just hurt all over anyway. Have you tried advil or anything before or after?
I'm very calm about it right now, I'm sure that's because I don't have a date set to start! Am hoping I don't do my usual rapid ramp-up to high anxiety when I do get a date!
I'm very calm about it right now, I'm sure that's because I don't have a date set to start! Am hoping I don't do my usual rapid ramp-up to high anxiety when I do get a date!
lilc
10-14-2005, 09:40 PM
Update: I went downstairs to check the mail and found I had packages. For heaven's sake, they (Copaxone people) only called me today, but there it is, my autoinjector. Spooky. For a minute I felt like crying. I'm sure I'll get used to it, but every time something "real" shows up it takes me by surprise. It's that whole, "Oh my goodness, I must actually be sick" thing. I sure am funny. I can spend hours thinking about how bad I feel but a box with my name on it shocks me!
They sent a video, too. Guess I need to find out if it is the same tape I've already watched...Oh, and a DVD. I really was hoping to watch a chick flick tonight!
They sent a video, too. Guess I need to find out if it is the same tape I've already watched...Oh, and a DVD. I really was hoping to watch a chick flick tonight!
Sharon Grace
10-17-2005, 03:13 AM
Hi lilc! I just got my first shipment of Copaxone this week and took my fifth shot tonight. I was very worried about side effects because I was used to the interferon injections and they had LOTS of side effects. I am glad to report that these shots are pretty easy. I take one every evening around eight or eight thirty and (so far so good) no side effects. I get a little pain and burning right after the shot but just for a few minutes and its over. The whole injection process takes about a minute. I hope yours goes as well as mine and I hope we all get good results from this drug.Let me know how its going - Take care - Sharon Grace
orngcrayon
10-18-2005, 06:55 PM
Get used to getting stuff from Copaxone! They send me a package about once a week. So far I have a back pack, a binder of info, at least 4 VHS tapes, 2 DVDs, a billion pens, a billion magnets, a tshirt... and the letters they send come in FedEx packages, so its packages all the time.
Good luck - I'm sure the shots will go well.
Good luck - I'm sure the shots will go well.