Sunday, June 8, 2008

I Wish I Known Before This Happened


This has been a trying week, today marks the third week I have started back in giving myself Copaxone injections. I was told by the Shared Solution nurse to put my auto injector on number four instead of six when I am injecting my thighs and arms. Each time I had an IPIR it was when I injected my thighs and that is why the nurse suggested I put the dial on four.

It did not feel good injecting myself again after two months of being injection free. In the beginning, my injection site would swell and spread to the size of a quarter and leave a lump for days. I wanted to quit the injections, but I feel more secure of my disease progression slowed by taking Copaxone. I also know the worse that can happen to me while being on Copaxone. Hell, if my last IPIR did not kill me, I know I will not die if I get another one while being treated with Copaxone.

I noticed while being back on Copaxone how fatigue I was again. I did not have the energy to do much of nothing and I slept to the point I actually lost track of what day it was. That was the strangest feeling thinking it is Thursday, but it was actually Friday. I had better stop watching Twilight Zone because I felt I was in on when I literally lost track of my days.

When the above picture happened, I was mentally preparing myself to stop taking Copaxone again regardless of my belief that it was slowing the progression of my disease. The blue yarn marks how wide my injection site that night spread and every pore in that area was open where a pen tip could have fit into them. To make matters worse if you look closely I also had a hive form in that area.

I never experienced an injection reaction like that before and I began to think my body was rejecting Copaxone. I went in to see my neurologist Friday, two days after it happened, the area was slightly swollen, pores closed, hive gone, and I showed her the picture. She is reluctant to switch me on Betaseron or Rebif so soon after getting back on Copaxone and Tysabri is out of the question. She prescribed Provigil for my fatigue and a nurse will be coming out to give me another course on injecting myself. I really do not give two cents about a nurse coming to my home to give me injection training again. I want to know how I can make my injections tolerable.

A different Shared Solution nurse called me Friday evening to discuss my injection reaction and set up to inform me they will be sending out a nurse. He asked me what the dial of my auto injector was on when I inject myself and I told him four, he stated, “A four was not a good setting if my build was not large and he suggested I put it back on six.” He also stated, “In the past several years they found out that placing a warm compress on my injection site for five minutes before injection has made the injections tolerable with less reaction problems.”


The above could have been prevented had I known what the nurse told me Friday evening and I do not understand why I am the last to know a warm compress for five minutes before an injection would have made all the difference. My injection sites since Friday evening had been tolerable and the Provigil is doing its job with my fatigue. I am looking forward to a productive week Monday because I did not get squat done last week.

14 comments:

Julie said...

Not fun to have a big site reaction like that. I've been pleased with how the 5 mins warm compress before Copaxone and 2 mins ice pack afterward helps minimize site reactions for me. Shared Solutions will send you ice packs that are the perfect size and texture - just ask them. I ask for two at a time (one I keep w/ my autojet setup to heat up, and one in the freezer). Hang in there!

Diane J Standiford said...

I have been on/off Copaxone for 9 years, nothing good to say about Shared Solutions, I'm afraid they will say whever it takes to get you back on the drug. I have NEVER pushed the needle in as far as they want. In my opinion they are just a data collection agency. (I did dig those little cold packs they sent...do get some.) I am no Dr., just a blogger, but it has been fine when I don't go in deep. MS--yuck! Hang in there! You'll find the best thing for your body. (First I've heard of hot packing, used to do cold, eventually neither.)

Tyra said...

Mom, hang in there. After seeing you use the warm towel until you get your packet seemed to work. I really hate that this med. do this too, but as you know I prefer this over your other options. Hopefully after using the packets hot before cold after like one of your bloggers mentioned might be the trick for you since we never were told that before knowing this isn't the first time you been through this. I love you and stay strong.

Lauren said...

Hi DeeDee,

I had the same problem of the welt forming about the size of a quarter right after the injection when I was on Copaxone therapy. In order to alleviate this problem (for me), I did use a warm compress for about five minutes just before I injected, but most importantly, I did not hold the autoinjector down as hard as I used to because if you do that, the medication has nowhere to go but right into the injection site, rather than into your bloodstream. I also massaged the injection site after I injected to help spread the medication into my system and not let it form into a lump under my skin.

Because I am thin, the lumps for me happened all time, until I started pretreating the area with warm compress (this will help distribute the medication better), not hold the autoinjector down so hard (I found that if the autoinjector leaves a deep imprint on your skin, you're probably pressing it down too hard), and then massaged the injection site lightly to help distribute medication better... all of these silly steps actually helped avoid the lumps.

I hope that this information is of some help to you... hang in there.

All my best, Lauren :)

PS: I did change that setting to a six, and not a four (I seem to recall, but it's been almost 2 years since I've done any shots).

~ Charlene S Noto said...

I was so glad to find your blog (am adding you to my blog roll). I'm taking Rebif and fortunately have not had that kind of reaction yet, though there are other issues. Hang in there. I enjoyed the read.

Blinders Off said...

Julie:

It is not fun, but the warm compress helps alot and I received my 2 ice packs from Shared Solution today.

Blinders Off said...

Diane:

You are right about them being nothing more than a data collection agency, but I am glad they are there. IMO, fellow MS'ers give better suggestions and advice to try.

I thought I had down to a science in doing what works for me, but I was thrown a curve ball and it was back to square one.

Blinders Off said...

Tyra,

I hang in there because of the love and support I receive from you...I Love You more!

Blinders Off said...

Lauren:

Thank you for your support, you have been supportive from day one I started to blog about living with MS.

Today I finally figured out how to use the auto injector without pressing it down to hard...I feel stupid not realizing all I had to do was use my other hand to hold the bottom of the injector from pressing down on my skin. DUH

Since I posted this and used the suggestions you all recommended here, my injections has been much better in the past few days.

Blinders Off said...

Charlene,

Thanks for visiting and linking me, I will do the same. I am glad you found your way here because if Copaxone get to the point I do not want to take it anymore, I only have two choices left and Rebif is one of them.

Debra aka Blindersoff

Lauren said...

Oh Debra, I'm so glad that all of our comments/suggestions have helped make your subsequent injections much better... hopefully this will continue for you.

In my opinion, we are all in this together, and anything that we can share with others to help them get through a problem, whether it's an emotional problem, a treatment problem, etc., this is what friendship is all about.

Furthermore, the DUH is on ME because I called you DeeDee, and not Debra (a HUGE DUH for me-LOL), but I have a good excuse..., I was speaking with another MS patient just before I posted on your blog, and her name was DeeDee (drumroll please...DUH).

I hope you enjoy your upcoming weekend, all my best dearheart-

Lauren :)

Emms said...

I was on Copaxone for seven months - I finally stopped it because I cried from the injection EVERY DAY. I hear your pain! Nothing helped me. But when it was time to stop it, the suggestion came from my nurse at Shared Solutions. I couldn't have gone through it without her.

After being off injections for approx 3-4 months, I have now been on Rebif for four months...and it is virtually pain free (or at least no tears and no welts).

I hope it keeps getting better for you!

Naomi said...

MS is one condition/illness that I don't have, but some of those I do have taught me a lot:
1. Nurses are rarely 'nursing' anymore; so often, they're technicians who were either not taught or did not 'listen' to the concept that being a nurse means taking care FIRST of basics.
2. Trust your instincts.
3. Question why.
4. Learn from experience (others' if you haven't collected your own yet).
5. Happiness is healing.
6. We make our own choice to be happy; it can't be taken away from us unless we abdicate it.
7. Humans were created to be happy, creative, and optimistic spiritual individuals.
8. There's no therapeutic substitute for a 4-legged friend, either. My German shepherd dog is a comfort, a comedian, a fellow-sufferer when I'm suffering, and intelligent in the way that one has to see to believe.
Yeah, I'm a retired nurse (an LPN who ended up over-trained for my license level) and I could not return to nursing as it exists so often today, even if my health would permit it. I'd go nuts with frustration!! More power to you--and your readers.

Blinders Off said...

Naomi,

Thanks for the input.