NeuroTalk Support Groups - Called the Copaxone people...

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Called the Copaxone people...

I got an email concerning the info I'd given them during a phone call a couple of weeks ago; said to call the Shared Solutions group...so I did.
We discussed my large lumps at the injection sites, as well as the itching and bruising.
She told me to change the number on the Autoject2, and stop the icing afterwards. I would like to get all of this under control...esp. the swelling and itching...
my DH and I are going to Hawaii in 9 wks, and the nurse and I both hope we can get these side effects under control before then...

Best wishes. Decreasing the depth is good advice. Works for many people. But, doesn't work for everybody. Didn't for me.

I don't understand why they'd want you to stop icing. That's the only thing that gets me through the burning after my injections. They've usually included icing in their advice to me for what I should do.

~ Faith

yeah depth may help i have heard folks use ice and folks use heat so maybe you need to switch temps, you do let the med warm up to room temps right, that helps too

the adjustment period can take a bit Deb, don't fret you are not adjusted it takes time took me a good while too

Thanks...sheesh, I thought I'd be used to it by now...thought my body would have stopped reacting like this.
I do take it out of the fridge to warm up...and I put a heat pack on the site before I inject. I agree, the ice cuts the post-injection pain quickly. I really don't think I'll follow that advice, since I don't want to bite on a bullet until the pain subsides...:eek:

Deb --

Sounds like you're doing a lot of what I'm doing. My site reactions/pain have been so bad, that I've come up with my own site rotation and frequency schedule. Shared Solutions can't recommend it, because it's not their protocol, but I plan to speak with my MS Specialist about it next week.

Injections in any site, other than my abdomen, ache for 3 days, like a tetanus shot. I just am not willing to hurt that much. So, I inject only in my abdomen, and only 4 days per week, because I don't want to invite lypo-atrophy.

I sincerely hope that my doc allows me to continue on Copaxone, doing it my way. I believe that it is likely working. I had a UTI last month. In the past, those have always triggered a major flare, even when I've caught and treated them early. This time, it did not.

I did not like any of the other med options that she gave me at my last visit. Most were research studies, that involved the possibility of being on a placebo, which I am not willing to risk. I think that one involved IV's, which I don't do well with; my veins are hard to find.

Again, best wishes.

Please let us know how it goes.

~ Faith

debbie,

it sounds like you need to inject a bit deeper.
i have a lot of fat and went to a 9 setting. all my side effects decreased dramatically.

i used to ice but don't anymore. i've been on C for almost 6 yrs and it's all gotten better with time.

One trick that has been like a miracle for me is this.

After the injection, doesnt matter if you use the auto inject, or manual, dont care what depth you chose. I take a cotton pad, or paper towel, or cotton ball, and put it DIRECTLY over the injected area. I use FIRM hard pressure to PUSH directly into the injected site. DONT RUB!!! Copaxone is a sharp crystal style med, and rubbing fractures the crystals. Just hold FIRM pressure for 15 to 30 seconds. This pushes the meds from the upper layers of fat, into the deeper layers of fat. I use my thumb, and its quite firm when I push it. The lumps are 75% less than they were. I was so anxious that I was having to start shooting between the lumps, and it was scary!

After 24 hours, you can HAND massage the site with lotions or oils. After 48 hours you can use a hand held vibrator, or machine massager or shower head on high massage directly on the spot. pound them into butter.

I learned this tip from a copaxone nurse. I was skeptical, and worried. I tried it, and WOO HOO! I am impressed. Esp on my muscular thighs. I used to smack muscle all the time and wasnt able to shoot deeply enough. by the way, using the side wall of your thigh works great too! you dont have to stick to the pretty picture they give you. I find the side wall of my thigh has TONS more fat than the top. My hip has MUCH more fat than my butt, and I have found being creative has helped me get new more comfortable real estate to poke.

I hope you are feeling better. :hug:

You state the side of the thigh...outside or inside?
I do what you say...push with a cotton ball...still getting lumps and bruising...so ugly...how are my thighs/arms going to look in Hawaii? grrr...
I do notice that when my DH gives me the autoject, I don't have as much lumping ar itchiness...hmmmm.

Quote:

Originally Posted by Debbie D (Post 449888)

I have heard of others using the INside part of the thigh, but I just dont have the courage for that. I use the OUTside part of the thigh. I go as high up as the butty area.

Im sorry you still have lumps/bruises. It took me a good year to get adjusted to the meds. lumps, itches, swellings, and so on. Most people say at 6 months they just sort of settle in. for me, it was at least that first year before things settled.

As for your trip, double up on bum shots. I have lots of real estate to chose from there. I dont use my arms anymore. I do double bum. So, if you use the outter thigh, up high, and the double bum and tummy, you should be mostly covered for your trip.

Thanks for the advice...I've got LOTS of extra geography to choose from:p!