New User Advice Needed Please!

[Kaitar]

Greetings to all!

I will be starting copaxone soon and have read through most of the posts here about it. I am taking note of all the things people do in their injection "ritual" and am hoping people will give me advice on the best "ritual" to start with.

Here's a list of what I have thought to ask, but please, ANY and ALL advice is welcome.

When do you do shots?

Is one location better/worse than the others?

Do you use cream on site? What kind? Before/After both?

Ice? How long? Before/After?

Vibration to numb area? (my arms don't count, they've been gone for a month, didn't feel IV, won't feel injection)

Do you take an oral med to help with side effects? What?

Did it get better/worse over time?

Pen or manual better?

What's a gripper?

Lastly, why did you pick copaxone?

Thanks ahead of time. I hope to hear a lot of responses. Searching through old posts is nice, but you never know how things turned out for the older posts so I thought directly asking might be more on target.

~Kaitar

[hunterd]

I did the injections right after dinner. I did not find any one site better/worse than any others. All I did before each shot was sterilize the area I was injecting with rubbing alcohol. I had no site reactions ever.since I never had any site effects, I did not have two take anything.I injected manually, i am not sure what a gripper is. And lastly, I took Copaxone because I had an allergic reaction to Avonex/Rebif, I developed antibodies to Tysabri and insurance stopped paying forIVIG so my dr. recommended Copaxone.

[MyGirlsMom]

Hi Kaitar!


I will gladly answer your questions to the best of my ability:

When do you do shots?
I inject in the evening before bed.

Is one location better/worse than the others?
Arms and thighs have been the most painful and have the most visible dents. However, the are places on my hip/butt that don't look bad, but are damaged and I can no longer inject into.

Do you use cream on site? What kind? Before/After both?
No, never noticed a difference in doing that.

Ice? How long? Before/After?
When I first started I iced before and after and also tried heating before and icing after. Over time I decided that it really didn't make a difference and not I don't use either.

Vibration to numb area? (my arms don't count, they've been gone for a month, didn't feel IV, won't feel injection)
I don't understand this question.

Do you take an oral med to help with side effects? What?
No. Not necessary.

Did it get better/worse over time?
Overall, it has gotten a bit better over time, but I think my pain/discomfort tolerance is better and that is probably more of an accurate statement.

Pen or manual better?
Manual is better but there have been times that I was unable it inject and my husband used the Autoject to make my injection for me.

What's a gripper?
It is a little blue piece that holds the needle for you. I find it quite handy as some places are hard to reach or sometimes my hand sensations are acting up and the gripper helps me feel the needle. Call Shared Solutions. They are free and they will mail you one.

Lastly, why did you pick copaxone?
Copaxone had the least side effects. I have had periods of depression and didn't want an Interferon risk with that. Also Inteferons require medicating and I didn't want to add those meds to my regime. I feel the new oral meds don't have a long enough track history and too many challenging and potentially risky side effects.

I have had the dreaded IPIR. The first one was by far the worst and the rest have been much more mild and manageable. I think I have had about two per year. I can deal with that.

If you start with the 40mg three times per week, that will help limit the dents as that is 208 injections less than what most of us having been taking these past years. My guess is that will substaintally reduce the dents/marks that the injections can make over time.

The important thing to remember is to pick the right drug for YOU!

I believe that for me, taking Copaxone is placing my faith in the success that others have had with this drug overtime, and it will help to prevent my MS from getting a lot worse. There is no crystal ball, but I remain hopeful on Copaxone. (Of course, that can depend on the day! Some days I am not so hopeful of positive! LOL!).

Best wishes on your decision!

[Kaitar]

Thanks for the replies so far......

The vibration is something my hubby saw on Shark Tank. Cold and vibration is supposed to help with shots for little kids. It's a fad item for babies and children afraid of needles I think.

Maybe I am totally overthinking this and just need to see how it goes first? I just want to give myself the best chance at tolerating the copaxone and I have REALLY sensitive skin. I'm allergic to ivory soap! There are many detergents and shampoos I can't use so when I read about skin reactions I get worried.

[Cat Mom]

Ok, here's my COpaxone ritual:

- I sterilize with baby bum wipes, alcahol swabs caused more stinging

- Pinch the site (big pinch) and inject right into it, I manually inject because it feels like I have more control of the speed the med is delivered

- There's a little bump that appears, push down on it with a finger for approx 30 seconds, do not rub, just push down. This step has been the most helpful to me. I've been on C for almost 7 years, I have no permanent lumps. I'm 5'8" 125 lb so not a lot of fat to inject into.

- Ice for approx 30 seconds.

- Apply Benadryl cream ( or any anti-itch cream).

I chose this med when Rebif didn't work for me, Tysabri was brand new, oral meds weren't available yet. I don't take anything (Advil, Tylenol) as there is no need to. The sting seems to be the biggest obstacle so once you find a way to get around it, it's smooth sailing.

I hope you have good results, please keep us posted on how it's going.

Jen

[AriD]

Copaxone was the first med I tried. Was on it for about 1 1/2 years. I chose it because it had the least side effects and thought it wouldn't interfere with working. No flu like symptoms. I took it at night too. Injected manually. I'm a nurse so giving injections was something I am used to doing. I found the least site reactions with the injections in my abdomen and butt. My legs and arms had multiple site reactions. I tried all the tricks. Cotton balls. Ice etc. the only reason I stopped taking it was because my neurologist was concerned about all the site reactions. The reddened swollen areas stayed for months. Some never went away. Other than that I never had any other problem with copaxone. I hope you do well with it. The copaxone nurses were very nice and helpful with suggestions to try to stop the reactions.

[pitlover91]

Greetings to all!

I will be starting copaxone soon and have read through most of the posts here about it. I am taking note of all the things people do in their injection "ritual" and am hoping people will give me advice on the best "ritual" to start with.

Here's a list of what I have thought to ask, but please, ANY and ALL advice is welcome.
I be been on copaxone for about month and a half so I'll give my thoughts and experience with it so far.

When do you do shots?
"I take the three times a week injections. I do Mon,wed,fri and on my injection days i inject around 1:30pm.

Is one location better/worse than the others?
"To me the one that stings the least is the abdomen. All other sites feel about the same.

Do you use cream on site? What kind? Before/After both?
"I don't use anything."
Ice? How long? Before/After?
"I was told not to ice before only heat if you want too. I warm for 5 min before and ice for 1 min after.
Vibration to numb area? (my arms don't count, they've been gone for a month, didn't feel IV, won't feel injection)
"I don't do any vibrating to numb the area
Do you take an oral med to help with side effects? What?
"I take no meds for side effects cause I don't get any. Only get site reactions with don't rreally bother me."
Did it get better/worse over time?
"I've only been on copaxone for a month and a half so can't really comment on that"
Pen or manual better?
"I chose manual, guess I trust myself more than that giant pen thing lol"

What's a gripper?
"Its an extender for the flaps on the syringes of your manually injecting which I do and it really helps."

Lastly, why did you pick copaxone?
"The truth I picked it because it had the least amount of side effects. Ms symptoms are already overwhelming as it is and with other meds and their own side effects ugghh"

Thanks ahead of time. I hope to hear a lot of responses. Searching through old posts is nice, but you never know how things turned out for the older posts so I thought directly asking might be more on target.

~Kaitar

Good luck with whatever you choose. Another reason I chose copaxone is because it has been out for many years and the only bad effect is the dreaded post reaction which I haven't got.

[pitlover91]

Greetings to all!

I will be starting copaxone soon and have read through most of the posts here about it. I am taking note of all the things people do in their injection "ritual" and am hoping people will give me advice on the best "ritual" to start with.

Here's a list of what I have thought to ask, but please, ANY and ALL advice is welcome.
I be been on copaxone for about month and a half so I'll give my thoughts and experience with it so far.

When do you do shots?
"I take the three times a week injections. I do Mon,wed,fri and on my injection days i inject around 1:30pm.

Is one location better/worse than the others?
"To me the one that stings the least is the abdomen. All other sites feel about the same.

Do you use cream on site? What kind? Before/After both?
"I don't use anything."
Ice? How long? Before/After?
"I was told not to ice before only heat if you want too. I warm for 5 min before and ice for 1 min after.
Vibration to numb area? (my arms don't count, they've been gone for a month, didn't feel IV, won't feel injection)
"I don't do any vibrating to numb the area
Do you take an oral med to help with side effects? What?
"I take no meds for side effects cause I don't get any. Only get site reactions with don't rreally bother me."
Did it get better/worse over time?
"I've only been on copaxone for a month and a half so can't really comment on that"
Pen or manual better?
"I chose manual, guess I trust myself more than that giant pen thing lol"

What's a gripper?
"Its an extender for the flaps on the syringes of your manually injecting which I do and it really helps."

Lastly, why did you pick copaxone?
"The truth I picked it because it had the least amount of side effects. Ms symptoms are already overwhelming as it is and with other meds and their own side effects ugghh"

Thanks ahead of time. I hope to hear a lot of responses. Searching through old posts is nice, but you never know how things turned out for the older posts so I thought directly asking might be more on target.

~Kaitar

Good luck with whatever you choose. Another reason I chose copaxone is because it has been out for many years and the only bad effect is the dreaded post reaction which I haven't got.

[October22]

Hi!

I've been on Copaxone for 13 months.
1. I do the shots right before bed.
2. It's different for everyone. My arms are hard because there's not a lot of fat to inject into.
3. Upper thighs and stomach are easiest - more fat there.
4. Never used any cream.
5. I did ice after each shot for the first 3 months until I went on vacation and didn't have any and realized I didn't really need it.
6. No vibration thingy.
7. Oral meds before have never been necessary.
8. Better over time. The first two thigh injections left pretty big welts that lasted a few days but none since.
9. Manual!!! Let's you control the needle going in and you can inject the meds slowly. I've never had a IPIR (knock on wood) I think because if where I place the needle hurts, I figure I'm hitting a vein or blood vessel and I move it. When it goes into fat, I don't feel anything. All of that is pure conjecture and wishful thinking on my part but I'm running with it...
10. A gripper makes the needle easier to hold. Shared Solutions will send you one for free.
11. I picked Copaxone because it had the least side effects and I was in shock and denial and my neuro insisted I start something. I changed to the 3x a week dose about a month ago - LOVE that! Way better than daily!!!

Good luck with your decision!

[ElliotB]

I've been on Copaxone for almost 1 year.

I am an early riser and typically take my injection at around 5am just before I exercise.

I have been able to figure out the correct injection depth at each injection site over the past year and basically have no injection issues at any of them.

I heat for 5 minutes and ice for 5 minutes and find I have virtually no injections issues. I have never used creams or anything else.

Initially, the shots felt like a mild bee sting. But after a few months, most of that sensation disappears. At this point, I basically don't have any sensation while doing my injections.

I rely on the Autoject exclusively and am fully satisfied with it.

Copaxone has been proven over time, especially over 10+ years, has the least amount of side effects and possibly affects the immune system the least of any of the DMDs.

Also consider diet, exercise and lifestyle changes which can be an important part of your recovery in addition to Copaxone.

Good luck.

[mamasam]

When do you do shots?

In the evening or before bed.

Is one location better/worse than the others?

I no longer inject my hip area.

Do you use cream on site? What kind? Before/After both?

No

Ice? How long? Before/After?

Ice after for a few minutes.

Vibration to numb area? (my arms don't count, they've been gone for a month, didn't feel IV, won't feel injection)

No

Do you take an oral med to help with side effects? What?

No

Did it get better/worse over time?

It's never been bad for me, though I have had some side effects on occasion. They are not something that would make me stop taking my meds.

Pen or manual better?

Manual. I can control the speed of the injection. I get VERY ill if the medicine goes in too quickly.

What's a gripper?

Are you referring to the little wings that you can slide the syringe into? I used that at the start, but I just use my syringe naked now.

Lastly, why did you pick copaxone?

My doctor actually highly recommended it. He was on a research team that tested it when he first started and thought very positively about it. Also, given how sensitive I am to many other types of meds, he felt this was the safest for me. I asked him about all the others, but this was the one he endorsed. It really works for me.

[Kaitar]

Thank you all for your informative replies!

The copaxone arrived yesterday and my nurse is coming to train us (my hubby and I) on Saturday.

I am feeling much more comfortable knowing your experiences and am hoping I do as well as you have.

[dwiktor]

cream

I do not use copaxone but a friend was getting chemotherapy and was given a cream for it. It took 30 minutes to numb. What I found worked for me (and my child) is Oragel or something like it, the highest percentage and it is now in a paint on pen form. I have to mix my meds as I am sensitive to the preservatives. So in the 5 minutes that all took I found my skin numb enough to inject (of course after wiping all that off with alcohol).

I had been doing fine for years and developed injection hesitation where I would end up just pricking the skin--which hurts A LOT. This little trick worked for me. Friends of mine have gotten the pen type oral analgesic to use with their kids shots or blood draws. In those cases we just slather it on--may be just psychological for them but it helps us moms. good luck with it.

Also over time if you, after a period of doing fine react badly to a shot, call the pharmacy for a different batch, sometimes the minute differences in mixes can be problematic.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[TheMiddleWay]

I’ve been taking Copaxone for about 3 years. I chose it because it had the least side effects; I have a history of depression. Taking it has gotten better over time, but I do have some “needle fatigue” meaning I’m just tired of doing injections every day. I’m switching soon to the 40 mg so I’m looking forward to fewer injections.

I do both manual (with the wing grip) and autoject depending on the location. I find autoject is easier for my hips and arms. I do use a rubber band around it to hold the safety mechanism closed so I don’t have to deal with holding it together. I’m just careful to make sure it’s touching me before I push the trigger. Here’s a video that shows the rubber band trick http://www.youtube.com/watch?v=V5JNaPUZ9nc

Also if you accidentally push the trigger before taking off the cap, your instinct may be to pull the cap (I’ve done it once and sprayed meds across the room). Try to fight that instinct and just unscrew the autoject and set it up again.

I don’t do any heat/cold before or after. I tried cold after when I first started, but it never seemed to do any good. I never took any oral meds, I think that’s only recommended for the interferons/Tecfidera.

For me the needle rarely hurts (except for occasionally hitting a bad spot). It’s definitely the drug that stings. It’s lessened over time, but sometimes I still get a bad one. It goes away after about 10-15 minutes usually.
Make sure you allow the alcohol to dry completely before you do the injection. I found the stinging is worse if I’m impatient and inject before it’s dry.

I had very itchy welts when I first started. Prescription hydrocortisone cream did nothing for me. The best solution I found was to slap myself where it itched (not until at least 24 hours after injection). It sounds terrible, but it’s better for your skin than scratching and actually gave me some relief. Now I just get slightly sore spots that feel a little like a bruise. Not bad at all.

If you’re doing manual injections and you notice blood flashback into the syringe BEFORE injecting, I recommend not injecting (but of course you should do whatever your doctor says, etc.). Shared Solutions says they don’t know what causes an IPIR, but I’ve had one bad one and it’s the only time I’ve seen blood in the syringe before injecting. Blood in the syringe after happens on occasion and that’s never been anything to worry about.

If you do happen to have an IPIR, I recommend calling SS, just so they can talk you through it. There were a couple of symptoms that aren’t really mentioned in the brochure as being part of an IPIR, but they warned me about on the phone (joint pain and severe chills). It really helps to just remember that it’s “normal” and that it’s temporary.

[Kaitar]

2 doses down

I've done 2 doses so far!!!!


It's not TOO bad.

Itched like Heck, then I hydrocortizoned it and was good to go after a half an hour or so.

Thanks for all your support.