Copaxone Sting Reduction Technique: A Personal Breakthough

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Copaxone Sting Reduction Technique: A Personal Breakthough

Postby notasperfectasyou » Sat Sep 08, 2007 8:32 am

If you try this, please post a reply. I know that typically there’s only about 1 reply post for every 30 or so views, but honestly I really think this is very important and I hope that with frequent replies we can keep it on the front page near the top of the Copaxone message board.

I’m not one to accept what I’m told, at least not without a lot of (seemingly annoying) follow-up questions. If I don’t get answers I go looking for folks who know (this is why I’m here with you) and or credible references. And then there’s good ole fashioned, figure it out yourself. One of my lifelong mottos is:

"If you continue to do what you’re already doing, you’ll continue to get what you’ve already got"

Seems simple, but so very hard to apply to real life (I promise to get to the Copaxone part soon). While I’m not out to lecture folks, I honestly can’t explain things quickly. My boss hates this characteristic and I hate the part where folks interrupt to ask me if there is a point to my explanation. I promise, there is.

A Christmas Gift

Last winter I researched to find a massage therapist who worked with MS related issues. I wasn’t looking for a “feel good” therapist; rather I searched through the AMTA website to find an experienced someone who might offer something helpful. My original idea was to give Kim a couple massages for Christmas and the idea grew into six.

After the first massage Kim felt great, relaxed and I hated to think that I was going to have to give her a stinging Copaxone shot that evening. Kim agreed that we needed to stay on schedule so I did the shot (we don’t use the auto-injector method) and …… NO STING! Zero. None. Zippo. We quickly credited the massage and had a repeat experience the next day. This continued for a few more days and a period of very minimal stinging rounded out to about two weeks. After the regular stinging returned, Kim booked another appointment a month later and we repeated the experience again.

The problem of course is that massages are expensive and most folks, including us, can’t pay for frequent massages. Kim used some of the remaining massages this year around Novantrone-time and it wasn’t until this summer that I thought of a way that I could try to put my analytical side to work making these shots less painful.

A Prat Plat

Since we use the “Injecting with the Copaxone Pre-Filled Syringe” method (not auto-injector), we need a place to pinch some skin fold. For us this has worked best on the posterior and hips. I noticed that sometimes the injection process (not the stinging part, but the actual insertion and working of the syringe) was more painful than other times. Being an accountant I looked to improve this by collecting data for analysis. To do this I developed a spreadsheet wherein I “roughly” tracked the coordinates of the site and the amount of pain Kim experienced in the injection process. We had a simple and subjective rating system. Shots were either; bad, ok, good or very good. We did not measure sting pain, only injection discomfort.

We quickly discovered that the sites that required Kim to lie on her back were more likely to be “bad” sites than sites on Kim’s tush. So we eliminated the front sites and continued with the back sites. We also learned that squeezing the skin real good helped. I also think I improved on my site selection in that I would try to stretch the skin out to get a better idea where veins and other sensitive stuff might be lurking. There are a lot of green, red and blue things within the keister and sticking a needle in them elevates the likelihood of getting a “bad”. I look for creamy or pinkish skin as I search for the “very good” sites.

Why Not Track the Sting Too?

You’d have though that I’d have thought of this. I didn’t, at least not until about two months ago. I revamped the spreadsheet and asked Kim to subjectively measure the sting from 0 to 10. Zero being no sting at all and ten being, well you know. Over the first 10 days the sting averaged 5.0. When we went back and revisited those (approximate) areas, the sting averaged 4.4 over the second 10 days. Over the third 10 days we averaged 3.5. I attribute this reduction to using the new info to select better sites and improve and reinforce my technique. Then Kim got her sixth massage.

The next ten shots, in order, scored; 0,0,0,1,1,1,2.5,2.5,3 and 3.5. I pondered this for a couple weeks as the average sting returned to about 3.5. I should note that when I say average, we get something like a bunch of 3’s and then a periodic 6 or 2. I know that there’s a math person out there who’s going to wonder about distribution so that’s what it looks like. Then in a stroke of genius…….

The Best 25 Buck I Ever Spent

I bought an extremely phallic looking massager at Target. It’s a Homedics Compact Percussion Massager (HCPM). The instructions say not to run it for more than 15 minutes; this is one I’m not going to question. The soft nubs it came with did not seem to move very well on Kim so I put the more solid nubs on and it glided about her with ease. We were very hopeful the first evening we tried it out. I massaged Kim’s back, legs and shot sites focusing about half the time on the shot sites. Kim did not complain about this. I started with it on a low setting and after 5 minutes I revved it up to high. Then with great anticipation we did the injection.

Ouch! Followed by winching and shaking; it was a very bad shot from the moment of the injection. It hurt, really bad and Kim gave it an 8.5, which is the highest she has ever scored a shot. I was momentarily devastated. But, how could the therapist have such great results, the dichotomy did not make sense. We agreed to try it again the next day with a delay between the massage and the shot. The delay worked out to 8 hours and Kim gave the shot a 2. The next day we did a 6 hour advance massage and the shot scored a 2.5. The next day we tried a 2 hours delay and Kim gave the shot a 4.5.

Flip Flopping to This Week

Since we alternate the shots on the right side and the left side, we decided to try a 24 hour time delay. Since the therapist massage lasted for several days, it would seem reasonable to think we could obtain a similar effect with the HCPM. For the last week I have massaged one side for 15 minutes and then done the shot on the alternate side. Kim’s sting ratings over the last 7 days have been; 2.5. 1.5, 1, 1.5, 2, .5 and 2! The sixth one was not a typo, one-half was the rating. The average is 1.6 and I have noticed that there have not been any “bad” or “ok” shots in the last week; they have all been “good” or “very good”. While I’m not ready to say there is a correlation with the injection process, there is a conspicuous reduction in “bad” and “ok’ shots that’s accompanying the sting reduction.

Closing Thoughts

Like everything on the message board, I can’t promise that this will work for you, but it has been truly amazing for us. Kim can even carry on a conversation now after the shot whereas before she needed to be “dealing” with the pain. I also realize that it’s based on 7 bits of entirely subjective data, but it’s been a huge difference for us and we needed to share it right away. For us this is a breakthrough, and we hope you might have a similar experience. Besides, if nothing else, for $25 you get a nice massage 15 minutes a day.

One last thing I just remembered about technique. A nurse once explained to me the idea of, “Don’t inject slowly, it creates more sensation”. Meaning, there is something of a darting motion that gets the needle in faster and is more comfortable for Kim. It’s entirely not intuitive to do this, but it definitely gets me more “very good’s”.

Ken
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I'll try it

Postby Longing4Cheese » Sun Jan 04, 2009 1:06 am

I read this now, in January 2009, and, as a new Copaxone user (5th injection tonight...not fun...maybe a 4.5 sting rating?), I'm looking for anything I can do to make the "hey, that wasn't so bad" experiences more reliably frequent.

So I'll try it out. At the very least, I'll get a massage. (I'm not so sure about using the phallic massager...kinda challenges my hetero male self-image, ya know...a "real" massage w/b better anyway.)

Why are there no replies to this post in almost over a year??
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Postby notasperfectasyou » Mon Jan 05, 2009 11:17 am

Has seemed odd to me, but lots of views and no replies. I imagine it might not be worth the time to folks to do this. You'd also have a bad experience if you didn't read the whole thing and you did the massage right before the shot. But, night before on the opposite side and then just swapping back and forth worked for us.

Kim is now off Copaxone so it's not an issue for us. Give it at least a week to see if it's helping. Sometimes, you know, we hit a bad spot. The manliness of the massager (funny to me) is that the one we used had big round nubs that I would press into Kim's skin lightly while doing the massage. After 15 minutes I was ready to stop, not tired, but ready to stop. I can see where there is room for interpretation on technique. Good luck, please post back. Ken
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Postby jlbb » Sat Apr 04, 2009 11:06 am

Can you give more specifics about exactly how you approach the massage/injection each time?
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Postby notasperfectasyou » Mon Apr 13, 2009 6:37 am

Hi Jibb,
Can you let me know what parts you would like clarified?
Ken
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Postby jlbb » Mon Apr 13, 2009 8:18 am

I guess if you could give me a step by step to follow including time of day and duration.
Thanks
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Postby notasperfectasyou » Mon Apr 13, 2009 11:49 am

jlbb wrote:I guess if you could give me a step by step to follow including time of day and duration.
Thanks


Time of day was never a consideration, we did shots anytime that was available. The key is to do the massage on the site the day before for 15 minutes. Now if you want to get technical and say that 11:59 pm to 12:01 am is still the day before, lets make it a minimum of 12 hours. So, you massage the site and then do the injection there 12-24 hours later. Good Luck, Ken
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Postby Mamacita » Sun Aug 09, 2009 3:19 pm

The massager is such a neat idea. My husband's shots don't usually hurt much anymore anyway, so we probably won't try that. But I did want to confirm your comment about creamy skin that doesn't have any visible veins...we found the same correlation.

I love that you charted out all the shots. We're into charts, also. We charted times of day when my husband's eye sight was bad and ended up buying him a pair of uv-protection eyeglasses to help with his eyes (which worked!). Gotta love the charts.
--Mamacita
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Postby turtle_fi » Sun Aug 16, 2009 7:01 am

for me the problem usually is not the sting, because i can handle that short period of pain (sometimes no pain, sometimes more), but if something would help to the 30 minutes time after the shot, which is much more difficult for me to bear. sometimes when i shoot to leg, it affects my walking for 30 minutes, in a bad way. wherever i have had the shot, it hurts for 30 minutes.
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Postby Smitha » Tue Oct 13, 2009 8:36 am

I am going to start with copaxone in a couple of weeks.. (just trying to postpone the discomfort). I will surely try the massage you have recommended. I was wondering how you massaged on the injection site. wouldn't that be more painful? Does she have any lipoatrophy (i guess that is what it is called), and if so are you able to massage over any of those sites?

I am so sorry if I sound ignorant. I am still very new to all this.
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Postby notasperfectasyou » Tue Oct 13, 2009 9:07 am

The key was to massage the site the day before for 15 mintues with a vibrating massager, like a back massager. So, if you had not had any shots yet, you would want to start now on your intended shot sites. But, got us the bottom worked best. I can't speak to whether this will work on other sites, just the bottom. I'd hit all your sites for a few minutes a day.

On the day you do your first shot, DON'T massage that site. Massage the others. Then the next day, DON'T massage the shot site, massage the others. The massage is done before the shots, but I suppose you can do it after to, but you'll feel better doing it before. So the key here is that the shot site is massaged at least 12 hour before the shot and not massaged again until at least 12 hours after. Ken
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Postby mstshirts » Sun Nov 01, 2009 7:19 pm

I don't think it's coincidence that your technique is working it makes sense. Softening the injection site has worked very well for me. Copax being a sub Q shot is made to go into that fatty tissue below the skin. Massaging or using a warm compress before the shot, softens the tissue and makes the shot be a "good one"

thanks for the info well done
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Postby gotmg » Tue Jan 19, 2010 10:47 pm

Ken, new to the copax life. Am excited to try this out. Will let you know how things go.
god bless
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Postby mstshirts » Wed Jan 20, 2010 6:00 am

The important thing is to stick with it (No pun intended)
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Postby notasperfectasyou » Wed Jan 20, 2010 2:30 pm

Todd, Is it helping you? Do you have insights to add? Ken
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