Cold copaxone update...
 

Hi everyone,

Just wanted to say that I finally got around to calling Shared Solutions regarding cold vs. warm copaxone. They said that the FDA is really saying that you need to take it out of the refrigerator at least 20 minutes prior to the shot. Of course, my body doesn't like the copaxone warmed - it likes it right out of the fridge.

As for my bleeding issue with almost every shot - I'm inclined to believe the needles are dull - of course, I don't know how you tell that! How can you tell? I look at it after I take it out of the autojector - but I just can't tell!

Anyhow, they are going to send me one replacement box (or atleast 25 needles) - because one box that I had wasn't injecting fully....which freaked me out b/c I wasn't getting all of the copaxone. (Yeah, I'm a freak!)

I'm also going to start heating before the shot to see if it makes a difference b/c on top of the "regular" site reactions of bumps and itches and stings - I end up with a black and blue at least 90% of the time! My question is - don't you find it a pain in the ***** to hold a heat pack to the body part to heat it? I mean, it's not like you can just set it on your leg...you have to hold it to the back of your arm, etc.

Sigh.

Sorry, I feel whiny tonight!

~Keri

I don't blame you -- I felt whiney on Copaxone, too!

I wish I had some great suggestions for you, Keri. So sorry. Dumb disease anyway. :mad:

Thanks Red i always warm mine up today however :Doh: and had a nasty reaction at the injection site, its still swollen was about 15 hrs ago I think I hit a nerve too today, on top of shooting the cold copaxone

I have not bruised yet I do get blood and injection site reactions and one time that Ipir or what ever that reaction is, nasty scary reaction, thought i was having a heart attack, and one time they think I hit a nerve I paralyzed myself from hips down for about 35 minutes

i do find between warming and ice on shot site thats about it for help that i know, are you using the auto injector Red? the needle may be set too deep, i cant do it any other way but auto and have heard a number who use to use the auto injector are so much happier injecting without it

Keri, I just said goodbye to Copaxone... my post about that is probably on page 2 by now.

I did have trouble with the autoject not fully injecting all the meds. From what I was told, there was some variance in the old and new autoinjectors... just enough that if you didn't click the syringe into place with at least two clicks, it wouldn't go far enough down into the injector body and it stopped short of emptying out all the drug. It's late I hope that made sense! EDIT BELOW:

OK STRIKE THAT... I knew it was too late for me to post last night:o The trouble with mine was the syringe was going too far down into the autoject and the plunger was not being pushed down all the way. I was told it was a syringe problem and then told it was an autoject problem.

I hope you can find solutions that work to help you avoid the reactions and bruising.

tk

!@#!@$#$%$%&$%^*%&*(%!#$%^&*(())_()_(^^$$%#!#

I could translate that, but I'd get kicked off the boards.

I just pre-heated.... (not so exciting to pre-heat and not even get a batch of cookies out of it!)..... The copaxone had been out of the fridge for a lil over an hour.

Then I shot myself up.

OMG $%^&*^%!#*&^%^*^&(&* !!!!!!!!

I'm shocked my neighbors down the block didn't come running over - I imagine I screamed loud enough for the entire neighborhood to hear!

I have NEVER had it hurt so much. Holy Moly. Holy something. OUCH.

Now I'm icing - but WOW. It still stings - and not in the same way it usually does. That was awful rotten lousy.

All I can think is - just a few more months of this and I should be in the clear and off of Copaxone.... I admire those of you who have been on it for a long time. I'm a big wimp.

TK - I did read your post and can feel your pain (somewhat, as I know my experience with Copax is supposed to be short-lived....

This disease just sucks.

~Keri

When you do the injections, do you wait for the alcohol from the wipes to dry??

If you dont let it dry and inject while the alcohol is still damp, some of the alcohol can get into the injection site and that stings like a %^&*(&&&^^%!!!!


Let the alcohol dry for 30 seconds or so and see if that helps.

Sorry to hear it stings so much when you use it at room temperature. How long have you been using Copaxone? Just keep in mind what the med is actually doing as it injects into your system. Breaking down fatty tissue AND attaching itself to your DNA strands, to make you well.

I compare the discomfort to getting a vaccine. Are you taking tylenol or ibuprofin before you take you shots?

I can't answer about warming up the area with a hot pack, I don't bother. Best of Luck with your shots :hug:

Mine used to sting like a really big bee the first month or so, but it went away. I use a rice filled heating pad that my hubby found at some store to heat my injection sites prior to the shot on my legs and arms. LOL, I have enough cushion elsewhere that there's no noticable difference if I use the heat or not.

The neat thing is that it's big enough that I can drape it over my thigh. For the arm, I can slip it under the armpit. I can then drape, lean back, and use the back of the chair I'm sitting in to keep it in place. Washable and microwavable too, which is always a plus.

If the brusing is happening a lot in the thigh, You may be too close to the knee. I've learned that I can't go past a certain point or I WILL get a bruise no matter what else I do. Lucky me, I have big freckles that I can use as reference points. :rolleyes:

It took trial and error to find out which settings on the AI wouldn't cause me bruising either in the thigh and arms. For me, that would be around 6. While the more cushioned areas are around 8.

Hope things improve soon. :hug:

I leave mine out to get to room temp - some spots bleed - but otherwise bee sting and somewhat swollen the next day -

Keri if it keeps doing this I hope you have already called the doc yesterday,

I am sorry you are going through this:hug:

My Copaxone 'routine'

1. take shot out of fridge right after doing daily shot (so it's room temp for the following day)
2. I don't pre-heat/ice, or post heat/ice
3. I wipe a HUGE area with the alcohol, and I wait a full minute
4. I manually inject all areas now, EXCEPT the hips. I tried the autoinjector on my arms 1 time, and the pain was UNREAL. Same with the stomach. 1 AI shot was good, the following one felt like someone had shot a dart into my stomach and I was reeling in pain.
5. After a shot I take the cotton ball asap, and I press down FIRMLY (don't rub) for 30 seconds. I find this reduces the lump and burning a bit.

I know it's not feasible for everyone to do manual injections, for various reasons, but my experience has been, other than hips, the AI HURTS me like heck in other spots, versus manual shots (and most of the time, the manual shot I don't even feel going in).

I am very similar in my routine to Laura. I do mine as the last thing I do before i get in bed at night.

I usually take the shot out of the fridge 1-3 hours before I inject and let it sit to reach room temperature. I wipe a large area and then give it time to dry while I load the syringe and get a cotton ball ready. Then when I inject, I pinch a large area together (on spots that I can reach to do that) so that there is plenty of skin and fat to inject into instead of muscle. As the shot is going in, I release what i have pinched up. Then immediately as I take the needle out, I put a cotton ball on it and hold it for 30-45 seconds with solid pressure (no rubbing). Then I throw the cotton ball away and coat the area with Benadryl Gel.

The benadryl seems to cut way back on the swelling the next day and cuts way back on the itching. I still get a bruise every once in a while, but I am very careful to avoid any area where veins are visible under the skin when I pick the injection site.

Just thinking - maybe your needle is set too deep - you might be going through fat and into you - I don't have that problem except on my right thigh so I change the setting a bit -

sorry this is happening red.
i take 4 syringes out at a time; (the med can be out a month according to the company).

i stand in the BR and do my abdomen and butt. that's 4.
then i sit at my kitchen table to do my legs and arms. that's 4.
thus i take 4 doses out of the fridge at a time.

i've been on C since '03. i guess i've been lucky because i havn't had many problems. i used to get bad site reactions but they've gotten much better.
i experimented a lot with the depth setting. and i too use the AJ.

maybe you can go to your dr's office and do an injection in front of the nurse and she can critique your technique. gosh, good luck.

Okay, I have to confess - I stopped using the alcohol wipes....I kept forgetting and then when I did it, I realized that it stung more when I used them - which I see is apparently from not letting it dry.

On other issues - No problem with the med not making it to the fat layer. I'm all fat layer. LOL. "very cushioned" - I like that phrase, thx, Fin Lady.

When the Copax nurse came out a while back to train me - she walked in my house, tiny little thing that she was, looked at me - and said, "Oh, you're a big girl, this is gonna be easy!" ...and I thought to myself, "I think she just called me fat!" :eek:

The pain went away after about 20 minutes last night.

I'm not brave enough to try the heat again. However, I took out the shot in the morning and it is now after 10pm and I will use it shortly. Sigh.

One day I may be brave and try the manual inject. Eeeek.

But my question still remains: HOW can you tell if the needle is dull??

~Keri

Beats me if you're using the AI, since it's concealed. I always visually inspect the tip of my needles before injecting :) Also look for the cloudiness in them (this is my fault, I sometimes forget to look at the liquid inside).

No issues so far for mine.

You really should be using the wipes. There is a chance you can accidentally get an infection. Just let the alcohol dry before you use the Auto Inflictor. :)

Erin - I agree....I know I am "bad" by not using the alcohol wipes....but I also have this strange thing - when I do use the wipes....by the time it has dried, my eyes have lost the spot that I had selected to do the shot!! (I guess it's such a vaaaaaaaaaaaaaast area!) LOL

I definitely do not like the "warm" shots. I wonder if SS "has" to say use it warmed up b/c that was the latest recommendation from the FDA apparently - but for years and years there were positive results without the shots being brought to room temperature. However, now more than ever, I'm way too chicken to risk it. So warm shots and pain for me!

Okay - edited to add: I just read Batman's post....and realized I should just use the wipes on a huge area...so this way I'm bound to hit a good spot. But then again, then my body will stink like alcohol wipes. Sigh.

~Keri

(4 to 7 months left and counting!)

Oh, Laura - I look at the needles after I take them out of the doo-hicky. I can't tell if they're dull or not. I guess it's a needle rupturing your skin - it's gonna hurt either way....but I swear, the first 3 weeks I did it in January, I had NO reactions. :(

I wipe a HUGGGGGGGGGGGGGGGGE area with the alcohol and let it dry. Then I'm not worrying about if I missed a spot :)

Dunno about the needles then... I've never noticed a problem with the needles themselves, only that the AI hurts terribly on me cept in the hips.

You wont reek of alcohol. The smell goes away pretty much once it evaporates.

and, yes, I wipe down a huge area, because I HAVE been having problems with dull needles, and sometimes have to try again with the manual shots because I cant get the stupid thing into my skin. (if it really wont go in, out goes that needle, and I just get another one out. I hate dull needles)

I've been bad about my shots for the past month or two. I skipped a month, and then didnt refill the Rx until after the pharmacy got mad at me because I would never answer the phone when they called me to set up the refill.

I started back up last week, but then was having problems with side effects from a different medication, so I just quit all medications except for Tylenol for the past few days. Tried to inject last night, and got the dull needle, so I'm just going to try to do the leg stab in a few minutes before I go to bed...or maybe I'll do the stomach stab instead...it was the leg that didnt want to get the shot last night.

Honestly, I have had spots where I have trouble injecting the needle (more pain than usual). I don't switch spots though, I just suck it up and jab haha!

I forgot to add that I take out of the fridge 5 days at a time for my shots. Put it in the handy dandy bag they gave me for the AI. I found the 24 hour warm up period to be less painful than than the one hour prior to injection, at least for me.

I've had one really bad experience with dull needles. Luckily it was my arm. The needle was so dull it wouldn't penetrate the skin even with the AI. :eek: I had to keep the injector against my arm and head for someplace I could release it without the Copax going all over the room. Then scrub the med off my arm so it wouldn't burn the skin.

I'm with the others of doing a wide wipe down with the alcohol pad and letting it dry.

I take my needles out for the week, stick them in the travel case, in my cabinet. Then I don't have to worry about forgetting to warm it up ahead of time.

The only reason why I can find we should give at room temp is because otherwise it can be very painful.

As far as dull needles. If you are using the Auto-Inject, I suppose there's no way to really know. For those of us manually injecting, you can look at the tip of the needle. Now I've yet to see a dull needle, and I'm close to my 1 year milestone.
When you look at these needles, it's easy to see why one would suspect there are dull needles. The tip of the needle is angled.

I just think sometimes some of the areas of skin that we try to penetrate are tougher than others.

If you are going to continue to give yourself a cold shot, I'd reconsider hot packing the area prior to shot.

Sounds like you are having a hard time following the suggested rules for injection? Might be something you want to speak with your doctor about?

I know it's tough to be young, have kids, and suddenly have this tough disease tossed into your lap. Remember, compliance with the medical how-to could be what saves your health in the long run. I don't feel that playing around with this type of med could be good for the long-run of your health. MS is no joking matter.

Best of Luck to you as you figure out how to best give yourself your medicine.

I gave up the autoject when I couldnt take the ginormous hives I was getting after using it.

I think it's the force that the autoject shoots that was causing the huge welts. As soon as I switched to manual injections (my dad taught me) the welts werent so bad, and sometimes I dont even get a welt or pain.

I was one of those people who thought that I could never manually inject myself with a needle. Took me less than a year to get tired of the autoject and to start doing the shots manually. (I think this week is my one year anniversary of starting Copaxone)

Call Shared Solutions and ask them to send the nurse back out. Get her to show you how to manually inject, and maybe the injections will get better.

Manual you just have so much more control over the situation I find, and no loud noise of the autoinjector going off.

I hated the autoinflictor but used it. Still did manual injections occasionally (hips mainly) because I found that I would sometimes leave the autoinflictor at home when I went somewhere overnight. Then you have a syringe and no injector and HAVE to do it manually. Just muster up the courage every once in a while to do it manually.

Depth is really important on the autoinflictor. That can make a HUGE difference. SS should be able to assist you with that but it really IS a matter of trial and error to see what works best for you.

I'm with the 7 day supply out of the fridge group. That's how I functioned. And when I got to the last syringe, I refilled THAT night so my next shot wasn't cold. BTW, under the boob or under the arm works well to warm it to body temp.

Still, I got bumps, black and blue marks, some bleeding, stinging (differed with different batches) and sometimes BADLY, pain, etc. Didn't matter WHAT I did.

LOL You're NOT going to smell like alcohol. Besides, once the injection's done you can wipe the area off gently with a damp towel or something. It's not like you have a huge gaping wound. It's just an injection!

I see what you did here Gaztastic ;)

REd, first, let me say I am sorry you are having troubles, the early days are the hardest while you get used to the meds, and the routine. I had stinging that would last an hour sometimes. it gets MUCH better. hang in there.

IF you are already pulling the cap off to check the needle (AI OR NOT) pull back on the plunger a bit. This pulls the meds OUT of the needle, and into the syringe. I have found that if any of the meds are sitting in the needle tip, or a tiny lil drip is hanging on the end, the shot is 50x more painful. So, I pull back on the plunger a tiny bit, and then wipe the needle with an alcohol wipe to be sure no residue remains on the needle.

As far as alchol wipes for your skin, unless you live in a bus station, you really dont need them. For those who are having bad skin reactions, one of the first things SS tells them to do is stop using alcohol wipes.

I have TOUGH skin, so sometimes no matter how sharp the needle, it takes some pressure to pop that sucker through the skin. I manually shoot, and find that popping it through the skin, and then pushing slowly till I reach the depth I want it less trauma for my skin. The AI SLAMS it into your skin.

Also if you passed through a capillary bed, or some nerve endings, it can make it ALOT more painful.

My routine.

1. take out needle 30 minutes before
2. hold it against body. (in bra, waistband, whatever)
3. wipe wide area with alcohol, so it dont matter if I miss
4. pull back on plunger, wipe needle
5. let BOTH areas dry.
6. pop through skin, push meds slow
7. withdraw needle
8. push directly into the injection area for 15 to 30 seconds.
HOLD FIRM PRESSURE BUT DONT RUB!
9. slather on benedryl cream
10. ice pack for a few minutes.

Since pushing the lumps/itch/ reactions and stings are way less.

Hope that helps.

I'm going to try adding the Benedryl to the nightly routine, thanks for that tip :)

You might try Lidocaine (pain reliever cream) that you can get in the drug store. Sometimes I would mix the Lidocaine with Benadryl cream. It stopped the pain.

Keri, have you tried a warmed up shot but icing the area before you give yourself the shot? Maybe that would work? I found when I used ice before instead of heat it hurt WAY LESS, sometimes not at all. But I had to stop using the ice because it would leave really weird welts -- it was strange, looked like the medicine didn't spread under my skin or dissolve as much. But it may be different with you. So I went back to the heating before hand and sometimes afterward (instead of ice). The Lidocaine cream helped with the sting a lot. Yeah, those copaxone shots are a pain in the you know what!! :(