Do site reactions ever get better?

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Do site reactions ever get better?

Postby kaykayaa » Mon Jun 15, 2009 7:57 pm

I am on my fifth week and have converted to self-injecting with 5 minutes of heat beforehand and holding the shot under my arm to warm it. That has helped a lot with the sting but the reactions....wow...huge welts on my arms. They are red and firey and hugely swollen and then turn a lovely shade of purple but only after about 4 days--just in time to take another shot. I have discolored places on my legs from the first week and in a couple of places hard knots that don't seem to be going anywhere. I'm sure these complaints are familiar to everyone on this board but I want some hope that these reactions will dissipate with time...so will they? How long?

If things don't get better, I'm seriously considering stopping this stuff. I'm one of those lucky patients for whom this all seems a bit like overkill--I've had one relapse in 20 years with no treatment...why start now? The lesion load is very low and we were in watch and see mode for the past year until my last MRI showed 3 new lesions so made the decision to start.....now I'm thinking that was not such a good idea. I'm not wanting to play roulette with my health. I'm willing to commit to this...but is there a light at the end of the tunnel????

It actually doesn't help that Shared Solutions calls every week to see how I am doing....something tells me they're not THAT concerned for my health...only that I'm staying on their drug....yes..cynical...but that's where I am today. I'm trying to tell myself this is good for me...like a vitamin...but it's hard when I'm so embarrassed by my arms and legs. I'm almost ready to take my chances with months of flu symptoms....

Advice anyone?
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Re: Do site reactions ever get better?

Postby NHE » Mon Jun 15, 2009 10:18 pm

I've never taken Copaxone, so I don't know if I can be of much help. However, you may want to read through this thread if you haven't already. It may be helpful for you.

Copaxone Sting Reduction Technique

NHE
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Postby pager » Sat Jun 27, 2009 8:18 pm

Hello NHE!

I just started the shots two weeks ago, so I don't really have much to tell you other than I understand. I don't have the bruising, but do have 2 to 3 inch welts on my thighs that last a couple of days. (And they hurt!!) The rest of my body seems to handle it a bit better. Copaxone says that it gets better with time, so I am trying to trust that....

At first I manually injected, but now I am using the autoject with a setting of 4 or 5 and that has helped.

I just wanted to say to try to hang in there....that I understand and that I too struggle every night with the injection. Sometimes I really cry for several minutes because of the sting and pain.

Mostly I just wanted you to know that you are not alone!!
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Postby kaykayaa » Sun Jun 28, 2009 12:00 pm

Thanks for the encouragement. Still having terrible reactions. Have tried solarcaine (for the burning feeling) and hydrocortizone with little effect. Next step is to call the doc to see if he has recs on what to do. I'm committed to 6 months on this and then we'll see.

Thanks so much for writing back. I was beginning to think I was the only one out there struggling with this!
Peace and good health to you.
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Postby Arcee » Sun Jun 28, 2009 2:13 pm

Not sure if this issue may be similar to yours, but in case it helps, I absolutely could not tolerate the injections into my thighs. Way to painful. I had to find parts of my body with the right kind of fat and manually inject at a 45 degree angle. I also put ice on afterwards. And ever since I have taken that approach, essentially sticking (ha!) to hips and stomach, it's been ok.
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Postby pager » Sun Jun 28, 2009 5:38 pm

So Acree, you do just your hips and stomach? It seems like it would be hard to rotate in just those areas. My thighs are really bothersome and I am not sure what to do....if I should stick it out, so to speak or not. They really don't suggest doing your stomach more than once a week, so I am confused on that too. (That is the easiest spot for me.)

Also, I haven't figured out how to do the autoject by myself on my arms....right now my husband pushes the button.
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Postby Arcee » Mon Jun 29, 2009 6:10 am

After much discussion with the Shared Solutions people and my PCP and nurses at the MS center and my neuro and some new research posted here previously, I settled on injecting every other day in four spots. And within each of those four spots - left stomach, right stomach, left hip and right hip - I rotate through four distinct locations.

While I found the Shared Solutions people helpful, bear in mind that they are required by law to offer advice and recommendations only in line with what the FDA approved. So if your body fat profile does not match the picture in their diagrams, or injections in the thigh are agonizing, they can't suggest trying another spot. My PCP on the other hand, literally went over my body and helped me identify the right kind of fat so the injections would be painless and effective.

The beginning was the hardest time for me. Hang in there!
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Postby pager » Mon Jun 29, 2009 6:55 am

Arcee, that is so helpful to know all of that. I thought too that the Copaxone folks were limited by FDA as well as liability issues. I am going to a MS seminar put on by an MS center in a couple of weeks. There will be a np and a lcsw there, so perhaps I might get more insight. I am scheduled with the neuro in a week also and told his np that I would like to review shot options with her. (She takes an interferon every other day...so she is familiar with the whole thing from a personal stand point.)

Did you say you have been taking the shots for three years? Was that right? Did you have the signs of lipoaphy (sp?)

The other thing I am struggling with is depression. Somedays I have been so sad and down. I don't want to be in this place in my mind, but I am having trouble getting out of it. Depression has always been a battle but definitely worse over the past 8-9 years. I don't know if it is MS related or not. It just sucks and I am having trouble feeling joy in my life. And I have so many reasons for joy, and I know that intellectually, but I just can't seem to feel it right now. This past month of MS has been so very hard for me and I wish I could be so optimistic and hopeful as others on this board have been.....
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Postby Arcee » Mon Jun 29, 2009 1:37 pm

Been doing it for about a year. No signs of any problems.

Depression, MS-related or not, can be so very, very difficult to deal with. Perhaps there is some professional you can turn to for help with that? Many of us on this board have done so over the years -- whether to talk or for medication - - and it really helps. You do not have to feel this way, and certainly not for an extended period of time.
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Postby RedSonja » Thu Jul 02, 2009 12:35 am

It does get better, I promise. To start with I had wasp stings, then mosquito stings, now mostly I have no reaction at all.

If I hit a blood vessel it feels like a horse kicked me. I have learned to avoid those places. I have also learned where my fat layer is too thin, that is arms and front of thighs. I never inject there.

That leaves just bottom and stomach. Well, I can manage that. To find a free spot, I feel around for a space between the bumps. I can feel the bumps, but they are not visible when I wear my swimsuit, strangely enough.

To start with I always cooled after injecting, but now I don't need to. This helps a lot. And if you don't have a cool pack handy, hold a glass of cold water or a wet cloth against the place.
Bibo ergo sum
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Postby kaykayaa » Fri Jul 03, 2009 7:57 am

Thanks everyone. I would love to be able to move to every other day and if I have clear scans this summer, I might raise that with the neurologists. My GP said I could take a Benadryl and I tried it two nights in a row. The welts were gone when I woke up...but... they came back as the day went on and the Benadryl wore off. Benadryl makes me too drowsy to use during the day. I wonder if, when hayfever season rolls around, my daily use of Claritin might help--but it's a different kind of antihistamine. Oh well. He also said I could use heat on it after 48 hours--treat it like you would any other swelling or injury...(ice first...then heat later). I haven't been consistent about that. After 48 hours, the welts have faded about halfway.

For those of you who have been on long term...do you have skin discolorations where the welts were? Mine tends to turn purplish brown and stay that way. I still have the spot where I took my first shot over 6 weeks ago. A sort of "perma-bruise" which is incidentally the one where I thought the horse that kicked Red kicked me, too! I was limping for about an hour!

Well, until something better comes along, I suppose this is the way it's going to be. I'm holding out hope for the whole CCSVI angle. I'm blessed to have no disability and only annoying tingles and buzzing for now. So I will continue to take it a day at a time.

Peace and good health to all of you!
Many thanks.
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Postby Needled » Fri Jul 03, 2009 8:27 am

Hi KKA, I have high hopes for CCSVI also. Remember, though, there are also several pills that are very close to making their way to market if they’re approved by the FDA. Cladribine may be available this year, pending approval. Fingolimod is next in line and is on track to file with the FDA by the end of this year. That’d be available next year if all goes well. Don’t forget, it’s JULY already, so next year is not far away. So there are a few promising options to keep your mind off the thought of shots every single day.
As for bruising…I’ve been on Copaxone for over three years, only missing a handful of shots. I’ve always bruised easily, had bad circulation and always been oversensitive to cold. When I do my shots during the warm weather, I don’t bruise. But, during the winter if my legs are cold, I swear the blood rises to the top of my skin and I can see every shot I’ve done on my legs in the last 2 months. I look battered. Then when I warm up, they go away. Just another oddity to add to the list, I guess.
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Postby kaykayaa » Wed Aug 05, 2009 6:43 pm

Just checking in. It's been a few more weeks and the site reactions haven't really improved. In fact, one neuro I saw was kinda shocked that they were so bad. She's actually suggested I try Avonex but I'm going to hang in there until the 3 month mark and see if I get any improvement.

So those other newbies out there...how are your shots going?
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Postby pager » Wed Aug 05, 2009 7:33 pm

Thanks for posting an update. I have been on Copaxone for almost two months (next week) and it is getting better I think. My thighs are still brutal and have good two-three inch welts. It seems that they are not lasting as long now and that makes me hopeful. My arms are a non event. However, sometimes it is still hard to want to do the shot, but I just keep talking myself into it.

Also, I am coming out of an exacerbation so my weakness and fatigue are improving. Since I have lost 20 lbs over the past 8 months and I had significant digestive and constipation issues along with weakness and pain in my torso area, I am having a colonoscopy and endoscopy in a couple of weeks. This way we can confirm that it is the MS and not anything else.

Would love to hear how others are doing!!
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Postby Wonderfulworld » Thu Aug 06, 2009 3:29 am

Hi Pager
glad to hear the sites are slightly improved for you, that's good. Maybe your body is starting to get used to the Copaxone.

That's good you're getting the weight loss checked too. Believe it or not I discovered I was a coeliac (blood test then endoscopy) too about 7 years ago, it turned out I had MS & Coeliac disease. I don't know whether Copaxone helped, or the fact that I stopped smoking, or whether sticking to the gluten-free diet has helped my MS - all I know is that I've gone from being considered "worsening RR-MS" to just plain RR-MS and that a lot of my symptoms that I thought were here to stay have lifted to an extent.
Best of luck with all the investigations.
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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