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Old 04-12-2008, 05:35 PM #11
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Quote:
Originally Posted by Natalie8 View Post
Thanks for the advice. I am using the autoinject right now. I was on Rebif for 2 weeks about 2 months ago. I was manually injecting that. It barely hurt. But the drug made me depressed and sick as a dog, as in I can't get out of bed and go to work sick. My training nurse for the C. said I should use the autoinject -- she didn't even explain manual shots. But I learned from the R. nurse so I could do it if I have to. I'm putting a heat pack on the spot for 10 mins. which helps a lot. I let the alcohol dry. The last couple before last night were fine -- only left a red rash for an hour or two. But I think I got freaked out about doing it manually because early on I had one needle that came out bent and the other seemed really dull!! If they are dull I'm worried the needle won't go in easily manually. The Rebif needles looked so so fine and didn't freak me out. The copaxone needles look a little wider than the R. needles and they have that strange jagged point on the end (like they are cut at an angle, not straight across). Is that normal? I wil try tapping the bubble. Taking after a shower seems like a good idea. I have to switch to the morning anyhow because it is giving me major insomnia!!
Another question -- I know you have to rotate the sites. But any suggestions for how you rotate within each individual site? They say do it 2 inches from the last place. Are you always having to mark down everyday where you do it so you remember the next time around? I've been trying to mark down but it seems like a pain. Like an idiot I did two shots in the same thigh, near the same place, 2 days in a row this week. My leg definitely hurt for awhile after that.

Rotate the sites. Like, right thight, left thigh, left stomach, right stomach, right side of the butt (if you can reach it), left side of the butt (if you can reach it, and always check to make sure you're not injecting too close to any site reactions from several days before. Sometimes the site reactions dont like to go away immediately.

I never inject into my arm...for one thing, really difficult to reach doing it yourself, and also the one time my dad injected my arm, I ended up getting the ever wonderful post-injection reaction that makes you feel like you're having a heart attack. I decided that the arm was geographically too close to my heart and decided to keep all my shots in areas lower than my heart.

I've started to think that poking myself with a needle everyday and having it hurt is a good thing. Tells me that whatever spot I give myself a shot is still working and isnt numb, and being NOT numb is always a good thing.

Oh, as for that dull needle you had...yeah, I've had a few of those. Wasted several shots (like 10) last month because I had a "few" dull needles.

I called Shared Solutions, gave them the lot number for my box, and told them how many dull ones I had, and they sent me replacements.

So, keep track of how many dull ones you think you might have, and then tell SS about it, and they'll send you out replacements fairly quickly.

I'm going to open the package of replacements next week and see if I get any dull ones in it. So far on the latest box, I've had one dull one. (two nights ago)

But, make sure you complain about the dull needles. If enough of us kvetch about the dull ones, they should be a lot tougher on their quality control people and they'll start sending out nice sharp needles instead.
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Old 04-12-2008, 10:27 PM #12
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Thanks for the great advice. I don't have problems remembering to rotate from thigh, hip, stomach etc. etc. (except for a couple of days ago when I stupidly shot in the same place two days in a row -- guess I was tired and spaced out). But within one site (say left thigh) are there any tricks to remembering where you did it the last time except for having to mark it down on that body map with the grid sites they give you? They say do it 2 inches away from the last place. A week later there is no lump or red mark to remind where I last did it.
By the way the copaxone nurse I had demonstrate for me has MS and has been on copaxone since it first came out (she was in the first trial). She advised avoiding the arms even though she says SS probably wouldn't agree with her. Her suggestion was 1. left stomach 2. right stomach 3. left thigh
4. right thigh 5. left hip 6. right hip 7. the saddle bag fat on the side of your hip that puffs out when you are sitting in a chair -- do it left side first week, right side second week and so on.
Dull needles seems ridiculous if you are paying so much for the medicine!! You would think they could get it right.
I'm going out to buy arnica gel tomorrow.

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Originally Posted by Erin524 View Post
Rotate the sites. Like, right thight, left thigh, left stomach, right stomach, right side of the butt (if you can reach it), left side of the butt (if you can reach it, and always check to make sure you're not injecting too close to any site reactions from several days before. Sometimes the site reactions dont like to go away immediately.

I never inject into my arm...for one thing, really difficult to reach doing it yourself, and also the one time my dad injected my arm, I ended up getting the ever wonderful post-injection reaction that makes you feel like you're having a heart attack. I decided that the arm was geographically too close to my heart and decided to keep all my shots in areas lower than my heart.

I've started to think that poking myself with a needle everyday and having it hurt is a good thing. Tells me that whatever spot I give myself a shot is still working and isnt numb, and being NOT numb is always a good thing.

Oh, as for that dull needle you had...yeah, I've had a few of those. Wasted several shots (like 10) last month because I had a "few" dull needles.

I called Shared Solutions, gave them the lot number for my box, and told them how many dull ones I had, and they sent me replacements.

So, keep track of how many dull ones you think you might have, and then tell SS about it, and they'll send you out replacements fairly quickly.

I'm going to open the package of replacements next week and see if I get any dull ones in it. So far on the latest box, I've had one dull one. (two nights ago)

But, make sure you complain about the dull needles. If enough of us kvetch about the dull ones, they should be a lot tougher on their quality control people and they'll start sending out nice sharp needles instead.
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Old 04-12-2008, 10:58 PM #13
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I have been on Avonex since day one (Feb of '97) so I have no idea how Copaxone feels. Avonex is given into the muscle. But if I take the syringe out of the refrigerator and inject it at room temp it feels much better. Good luck You are always welcome!

I went through a time of semi-depression about injecting myself and I now visualize my shot as my weapon against this MSonster and know that I myself am doing something.
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Old 04-12-2008, 11:18 PM #14
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Quote:
Originally Posted by Natalie8 View Post
Thanks for the great advice. I don't have problems remembering to rotate from thigh, hip, stomach etc. etc. (except for a couple of days ago when I stupidly shot in the same place two days in a row -- guess I was tired and spaced out). But within one site (say left thigh) are there any tricks to remembering where you did it the last time except for having to mark it down on that body map with the grid sites they give you? They say do it 2 inches away from the last place. A week later there is no lump or red mark to remind where I last did it.
By the way the copaxone nurse I had demonstrate for me has MS and has been on copaxone since it first came out (she was in the first trial). She advised avoiding the arms even though she says SS probably wouldn't agree with her. Her suggestion was 1. left stomach 2. right stomach 3. left thigh
4. right thigh 5. left hip 6. right hip 7. the saddle bag fat on the side of your hip that puffs out when you are sitting in a chair -- do it left side first week, right side second week and so on.
Dull needles seems ridiculous if you are paying so much for the medicine!! You would think they could get it right.
I'm going out to buy arnica gel tomorrow.

I dont mark them down in the little map...(*hanging head in shame*) cant even find the little book that map was in. I just try to remember to stay away from any appendage or area that I gave a shot in at least from 3 days before. I've branched out into getting some of my shots in the butt by having my dad do those, since I cant reach back there very easily myself.

Having an extra person around who is an expert needle wrangler is always a good thing.


Last week, I forgot, and didnt check for lumpy spots before injecting, and ended up injecting right next to a spot that I had done about 2 days before. Wasnt until I was halfway thru with the shot that I realized I was too close to a previous injection site...I figured it out when the old site started to swell up from getting injected so closely to it. That was unpleasant.

Right now, I'm staring at a needle, just wishing that I didnt have to do it. I want to take a day off from the shots, but if I do that, I'll probably end up taking a week off instead.

It would be so much easier if they made this crap in pill form...but, if they made it in pill form, it would probably have some really horrible side effect, like turning your skin bright purple with fuschia polka dots that have bright yellow polka dots inside them or something...and it would probably make you pee green or something like that...oh, and we'd probably have dead skunk scented farts or something...Because, you know a daily pill for the rest of your life has to have some horrible side effect(s) to go along with it. At least the shots just cause you momentary (or, daily) pain instead of some weird emabarassing side effect(s).
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Old 04-12-2008, 11:30 PM #15
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Erin, I hear you on sitting around and not wanting to do the shot. I have been doing the shot at night. It's 11 pm where I am. (not even that I go to bed that early--I am such a late night owl). BUT...I am switching the shot to the morning to see if that helps with the insomnia and HYPER feeling the C. has been giving me. So that means I skip the shot tonight and start tomorrow morn. on the usual routine. Tomorrow is #12. Now it's a scary thought to think there will be a #300 or a #1,000 (or even a #2,567??) And I have to say that I have been thrilled not to have to give myself the bee sting tonight. Also thank god I'm not having the horrible headaches and severe nausea anymore. I think the only thing that is keeping me dedicated to the idea of a shot a day is that about 3-4 days after I started the C. my vision went from fuzzy to extremely sharp in a startling scary way. It's pretty trippy. I don't know if it is the C. or just a coincidence from the crazy ups and downs of MS. But also I imagine more lesions growing on my brain and I don't want that so I think I can convince myself to keep going.

Quote:
Originally Posted by Erin524 View Post
I dont mark them down in the little map...(*hanging head in shame*) cant even find the little book that map was in. I just try to remember to stay away from any appendage or area that I gave a shot in at least from 3 days before. I've branched out into getting some of my shots in the butt by having my dad do those, since I cant reach back there very easily myself.

Having an extra person around who is an expert needle wrangler is always a good thing.


Last week, I forgot, and didnt check for lumpy spots before injecting, and ended up injecting right next to a spot that I had done about 2 days before. Wasnt until I was halfway thru with the shot that I realized I was too close to a previous injection site...I figured it out when the old site started to swell up from getting injected so closely to it. That was unpleasant.

Right now, I'm staring at a needle, just wishing that I didnt have to do it. I want to take a day off from the shots, but if I do that, I'll probably end up taking a week off instead.

It would be so much easier if they made this crap in pill form...but, if they made it in pill form, it would probably have some really horrible side effect, like turning your skin bright purple with fuschia polka dots that have bright yellow polka dots inside them or something...and it would probably make you pee green or something like that...oh, and we'd probably have dead skunk scented farts or something...Because, you know a daily pill for the rest of your life has to have some horrible side effect(s) to go along with it. At least the shots just cause you momentary (or, daily) pain instead of some weird emabarassing side effect(s).
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Old 04-12-2008, 11:31 PM #16
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by the way have you (or anyone) ever gotten dry mouth from the copaxone?
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Old 04-12-2008, 11:50 PM #17
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Quote:
Originally Posted by Natalie8 View Post
Erin, I hear you on sitting around and not wanting to do the shot. I have been doing the shot at night. It's 11 pm where I am. (not even that I go to bed that early--I am such a late night owl). BUT...I am switching the shot to the morning to see if that helps with the insomnia and HYPER feeling the C. has been giving me. So that means I skip the shot tonight and start tomorrow morn. on the usual routine. Tomorrow is #12. Now it's a scary thought to think there will be a #300 or a #1,000 (or even a #2,567??) And I have to say that I have been thrilled not to have to give myself the bee sting tonight. Also thank god I'm not having the horrible headaches and severe nausea anymore. I think the only thing that is keeping me dedicated to the idea of a shot a day is that about 3-4 days after I started the C. my vision went from fuzzy to extremely sharp in a startling scary way. It's pretty trippy. I don't know if it is the C. or just a coincidence from the crazy ups and downs of MS. But also I imagine more lesions growing on my brain and I don't want that so I think I can convince myself to keep going.

I dont think the C is supposed to do anything for your symptoms...it's supposed to reduce the number of exacerbations you get per year. (anything to help me miss a few exacerbations, I'm all for)

I did have some weird improvements in my vision in the past few months. Used to be (B.M.S. = Before MS) that whenever I'd look at a candle, or a certain type of light bulb, that the bulb or candle flame would look like it had rays of light coming off of it, and now, especially when I look at a candle in a restaurant or a fireplace, the flame is perfectly clear. I can see the shape perfectly, and the outliine of the flame is super sharp looking. Plus, candle light doesnt hurt my eyes like it did before the MS. It's weird.

Lightbulbs dont look like there are rays coming of light coming off of them anymore either. They still hurt my eyes some to look at tho.

While I had the really bad optic neuritis in 2006, the lightbulbs and candle flames were always fuzzy and painful to look at...I dont know why things are so clear now.
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Old 04-12-2008, 11:52 PM #18
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Quote:
Originally Posted by Natalie8 View Post
by the way have you (or anyone) ever gotten dry mouth from the copaxone?
When I first started the C, it made me go number 1 a lot at night...a LOT!

I also got weird headaches for about a month or so. But, I was having a lot of headaches before I started taking the C, so I dont know if it has any correlation to me starting the C. The headaches were a little worse for awhile after starting the C.
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Old 04-13-2008, 10:30 AM #19
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The site reactions do get better. I've been on it since May. The only place I still get reactions are my thighs, and I think that's because there's not a lot of cushion there.

For some people the ice works, but it makes it worse for me. I use heat before and after. After the injection, I use a warm washcloth to remove any copax that might have gotten on the skin.

There's a golden rule for the autoinject. If you can pinch an inch, set on 6-8. less than on inch, 4-6. more than an inch, 8-10. It took me awhile to figure out what settings are best for each rotation site.

Best of luck with the med.
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Old 04-13-2008, 09:50 PM #20
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Finlady, Wiping off with the washcloth is a good idea because I notice stuff drips out when I pull the needle out. Ice doesn't work for me either -- it hurts too much. Thanks for the advice on the autoinject depths.

Erin, maybe the headaches were from the C.? I had some bad ones the first week. They are getting better.

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The site reactions do get better. I've been on it since May. The only place I still get reactions are my thighs, and I think that's because there's not a lot of cushion there.

For some people the ice works, but it makes it worse for me. I use heat before and after. After the injection, I use a warm washcloth to remove any copax that might have gotten on the skin.

There's a golden rule for the autoinject. If you can pinch an inch, set on 6-8. less than on inch, 4-6. more than an inch, 8-10. It took me awhile to figure out what settings are best for each rotation site.

Best of luck with the med.
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