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Injection site reactions, can you tell me if this is normal?
I have been on Copaxone for a bit over 2 weeks. From the first shot I had, what I consider, a minor reaction. Red skin around the shot area, itchiness, the bee sting feeling. All of that would last an hour or two and by the morning I would be fine.
Last week I started having lumps under the skin where the shot was. It is still there a week later and slightly sore if I press on it. My stomach has had the least reaction, my legs the worst. In my legs the bee sting feeling comes on quicker and stronger and lasts longer. I still have redness in the injection site from 4 days ago. I tried setting the autoinject on a lower depth and that did not make a difference.
The last two days I did the shot in my arms. In my left arm about 1/2 of the upper arm feels like it is one large lump, not visual but you can feel it if you rub my arm. I also had a welt develop right after I did the shot. It was about the size of a quarter and did not fade for at least a couple hours. Yesterday I did the shot in my right arm and the welt was bigger this time, about a half dollar sized. I did the shot at about 9 last night and the welt is still noticeable, though faded a bit, not as raised.
These issues are not enough for me to consider stopping the shots, but I was wondering if increasing injection site reactions are a normal part of the body trying to get used to the medicine? I figured you guys would have more honest advice and suggestions than Shared Solutions would!
~Jess
Last week I started having lumps under the skin where the shot was. It is still there a week later and slightly sore if I press on it. My stomach has had the least reaction, my legs the worst. In my legs the bee sting feeling comes on quicker and stronger and lasts longer. I still have redness in the injection site from 4 days ago. I tried setting the autoinject on a lower depth and that did not make a difference.
The last two days I did the shot in my arms. In my left arm about 1/2 of the upper arm feels like it is one large lump, not visual but you can feel it if you rub my arm. I also had a welt develop right after I did the shot. It was about the size of a quarter and did not fade for at least a couple hours. Yesterday I did the shot in my right arm and the welt was bigger this time, about a half dollar sized. I did the shot at about 9 last night and the welt is still noticeable, though faded a bit, not as raised.
These issues are not enough for me to consider stopping the shots, but I was wondering if increasing injection site reactions are a normal part of the body trying to get used to the medicine? I figured you guys would have more honest advice and suggestions than Shared Solutions would!
~Jess
I started copaxione a month ago and still have the problems everyone else listed. The Shared Solutions nurse advised me to put heat on the site before the injection. I have not tried it yet but will start today.
Wow, Mary, great post. Chaulk full of great info for those us us brand new to this. Thank you so much!!
Julie
Julie
Hey Jess. I had started to comment here but lost the whole thing. I'm working on getting my computer system back up and running reliably. It's been quite the process.
I have noticed a pattern among new Copaxone users here. There seems to be an initial 'honeymoon' period that lasts a few weeks. During that time, we each seem think we are one of the few fortunate who don't experience much in the way of site reactions.
Unfortunately, it would appear our bodies are using this time to ramp up defenses against Copaxone and/or the perservative contained in the solution. I did meet a long term user who had no problems with site reactions until after Teva tweeked their manufacturing so it would be possible to store Copaxone at room temperature for longer periods. That's convenient but I believe it involved changing or adding perservative and has provoked more site reactions.
I can't remember exactly how long it was after starting Copaxone that I asked the same type of question here but I know it was within 2-6 weeks. My complaint was about itching of ALL sites (even those that were many days old) after I had experienced none of that initially. I also started to have longer lasting allergic looking wheels, stinging and lumps developing that lasted a week or two (or occasionally three).
I was disappointed but continued on with the encouragement of this community and because I was determined to give it my best effort in order to help my body fight MS. I tried many of the things suggested by Copaxone users here and tricks I learned at pharmaceutical sponsored seminars. Some worked for me. Others didn't. As I worked on techniques to discover what helped me, I found that it felt better just to have my focus on what was working rather than how much I was reacting.
And then sure enough, as everyone had predicted, I noticed the itching (my loudest complaint) had disappeared completely after a couple of weeks. All the other reactions decreased over time. It's been seven months now and while I still wish injections didn't have to be part of my daily routine, I have few complaints now. Several days a week I won't even get any sting afterwards. I start wondering if I did something wrong. Was there anything in the syringe? There is no satisfying me sometimes!
I'm still tweeking my personal technique. I'm finding exactly what depth works best for each site. I use a warm compress for more comfort injecting my thigh but find I can only use a small strip on the upper third of the potential injection area. Since my belly has plenty of potential injection sites but little skin reaction, I'm planning to divide it into two potential sites and designate the thighs together as one. That way I'll still have seven general areas every week to maintain good rotation but each thigh will only be injected once every two weeks.
I've also added a massage of all sites with a smooth, plastic 'stone' while I'm lathered up in the shower (so it glides across the skin easily). Use of bar soap to do this was suggested to me but most are too drying for my skin. You don't want to massage sites within the first 24 hours because the drug needs to be allowed to absorb slowly. But after that time you want to break up and massage out any scar tissue that may be thinking about forming around the irritated tissue. If you leave it go too long, there will be no saying goodbye later.
Lumps come and go. There are always some lingering but they aren't noticible to others (at least nobody has commented) and they all DO disappear and make room for new ones. It must be so because each general area has received something over 25 injections now and seldom can I find more than one lump per area when I massage.
I suspect this will smooth out for you too. Sure hope so. In the mean time, it's always good to have the reassurance of a professional on your techinque. Be sure you pass along any tips you get next week at the infusion center.
Mary
I have noticed a pattern among new Copaxone users here. There seems to be an initial 'honeymoon' period that lasts a few weeks. During that time, we each seem think we are one of the few fortunate who don't experience much in the way of site reactions.
Unfortunately, it would appear our bodies are using this time to ramp up defenses against Copaxone and/or the perservative contained in the solution. I did meet a long term user who had no problems with site reactions until after Teva tweeked their manufacturing so it would be possible to store Copaxone at room temperature for longer periods. That's convenient but I believe it involved changing or adding perservative and has provoked more site reactions.
I can't remember exactly how long it was after starting Copaxone that I asked the same type of question here but I know it was within 2-6 weeks. My complaint was about itching of ALL sites (even those that were many days old) after I had experienced none of that initially. I also started to have longer lasting allergic looking wheels, stinging and lumps developing that lasted a week or two (or occasionally three).
I was disappointed but continued on with the encouragement of this community and because I was determined to give it my best effort in order to help my body fight MS. I tried many of the things suggested by Copaxone users here and tricks I learned at pharmaceutical sponsored seminars. Some worked for me. Others didn't. As I worked on techniques to discover what helped me, I found that it felt better just to have my focus on what was working rather than how much I was reacting.
And then sure enough, as everyone had predicted, I noticed the itching (my loudest complaint) had disappeared completely after a couple of weeks. All the other reactions decreased over time. It's been seven months now and while I still wish injections didn't have to be part of my daily routine, I have few complaints now. Several days a week I won't even get any sting afterwards. I start wondering if I did something wrong. Was there anything in the syringe? There is no satisfying me sometimes!
I'm still tweeking my personal technique. I'm finding exactly what depth works best for each site. I use a warm compress for more comfort injecting my thigh but find I can only use a small strip on the upper third of the potential injection area. Since my belly has plenty of potential injection sites but little skin reaction, I'm planning to divide it into two potential sites and designate the thighs together as one. That way I'll still have seven general areas every week to maintain good rotation but each thigh will only be injected once every two weeks.
I've also added a massage of all sites with a smooth, plastic 'stone' while I'm lathered up in the shower (so it glides across the skin easily). Use of bar soap to do this was suggested to me but most are too drying for my skin. You don't want to massage sites within the first 24 hours because the drug needs to be allowed to absorb slowly. But after that time you want to break up and massage out any scar tissue that may be thinking about forming around the irritated tissue. If you leave it go too long, there will be no saying goodbye later.
Lumps come and go. There are always some lingering but they aren't noticible to others (at least nobody has commented) and they all DO disappear and make room for new ones. It must be so because each general area has received something over 25 injections now and seldom can I find more than one lump per area when I massage.
I suspect this will smooth out for you too. Sure hope so. In the mean time, it's always good to have the reassurance of a professional on your techinque. Be sure you pass along any tips you get next week at the infusion center.
Mary
I was having numerous site reactions the lasted for days and was told to avoid those areas on the next rotation and another spot I could use were my *love handles* if they were fleshy enough..... after nearly passing out from laughing so hard because they are MORE THAN *fleshy* I now use them. Hope this helps
Add on comments:
Who ever gets their ears on those alternative sites, please do post them! I'd love to have a couple extra spots to hit.
Who ever gets their ears on those alternative sites, please do post them! I'd love to have a couple extra spots to hit.
At the beginning I had bruises and a quick call to Shared Solutions solved it.... I was self administering and pushing too quickly that caused the bruising. Since then I inject slower and not one bruise since :) Hope this helps
The reason the Shared Solutions person said talk to your Neurologist is they have to stick exactly to the way the drug was administered in trials. They can not vary from the protocol one bit for legal reasons. Since they only used those specific sites and that is how the FDA approved it that is how they have to play it. Your Neurologist can give you different directions.
Alex
Alex
Hi Jess,
I have been on it for 17 months and I still have site reactions, I still have one from Saturday that is hard and red today. Its always different but have had no bruises...and have tried all the tricks except I forgot about the massaging after 24 hrs. But I use ice packs if they bother me afterwards which is most of the time.
But I have hives a lot too and sometimes I cant tell my injection site from my hives...
But I would not quit, what I get from them is worth it and yiu get used to it, sometimes a minor
problem in our lives.
Hang in there, I am proud of you too !!
Hugs, meg
I have been on it for 17 months and I still have site reactions, I still have one from Saturday that is hard and red today. Its always different but have had no bruises...and have tried all the tricks except I forgot about the massaging after 24 hrs. But I use ice packs if they bother me afterwards which is most of the time.
But I have hives a lot too and sometimes I cant tell my injection site from my hives...
But I would not quit, what I get from them is worth it and yiu get used to it, sometimes a minor
problem in our lives.
Hang in there, I am proud of you too !!
Hugs, meg
Jess-
I have been on Copaxone about 3 weeks now. There have been times when I have bruised (2-3 times), gotten lumps (twice), gotten welts (maybe 3 times), had the bee sting feeling (almost everytime), and had soreness (almost everytime) but except for the brusing, it all went away by the time I woke up the next morning.
I have found taking a shower before giving myself the shot helps keeps me relaxed. I also put an ice pack on it after for about 10 mins. after the injection. When I have had a problem, the nurses at SS have really been quite helpful. For example, the welts are often caused by not having the auto injector deep enough. When I adjusted, I didn't get anymore welts.
Now of course I am a rookie and just because you use a 6 on the thigh in one spot doesn't mean you shouldn't use a 7 in the thigh in another spot. It will take time to learn.
I have heard that applying anti itch cream and putting a small pad over it for the night will relieve the itching. Mine is mild enough that it isn't a problem for me yet.
Hang in there. I hear it does get better and am sure it will for you.
Julie
I have been on Copaxone about 3 weeks now. There have been times when I have bruised (2-3 times), gotten lumps (twice), gotten welts (maybe 3 times), had the bee sting feeling (almost everytime), and had soreness (almost everytime) but except for the brusing, it all went away by the time I woke up the next morning.
I have found taking a shower before giving myself the shot helps keeps me relaxed. I also put an ice pack on it after for about 10 mins. after the injection. When I have had a problem, the nurses at SS have really been quite helpful. For example, the welts are often caused by not having the auto injector deep enough. When I adjusted, I didn't get anymore welts.
Now of course I am a rookie and just because you use a 6 on the thigh in one spot doesn't mean you shouldn't use a 7 in the thigh in another spot. It will take time to learn.
I have heard that applying anti itch cream and putting a small pad over it for the night will relieve the itching. Mine is mild enough that it isn't a problem for me yet.
Hang in there. I hear it does get better and am sure it will for you.
Julie
Thank you very much guys!! I might just be overly stubborn, but darn it, I fought too hard to even get the chance to use the DMD, I'm not letting this stop me!
I will get some benadryl and message the lumps, thank you for those suggestions! And I will talk to my neuro about alternate sites. Actually, I'm going to try to see my regular doctor on wednesday (for the foot pain) so I'll get his opinion too :-)
Thanks guys!! I hope you are all having a good Monday!
~Jess
I will get some benadryl and message the lumps, thank you for those suggestions! And I will talk to my neuro about alternate sites. Actually, I'm going to try to see my regular doctor on wednesday (for the foot pain) so I'll get his opinion too :-)
Thanks guys!! I hope you are all having a good Monday!
~Jess
hey jess...
just wanted to add my voice to the encouragement you are getting here!
way to go, this can't be easy with your six sweet little monkeys to care for too.
thinking of you....
michelle
just wanted to add my voice to the encouragement you are getting here!
way to go, this can't be easy with your six sweet little monkeys to care for too.
thinking of you....
michelle
Jess,
I would love to tell you how long it will be before your body adjusts to this, but that is one big mystery. I'm thinking it was a good 6 weeks or so before the sting diminished.
In a recent call to Shared Solutions, the nurse told me that I should massage those lumps/knots, starting 24 hours after the injection. She said to do it in the shower because the wet skin is easier to rub. She said we should do this to break this apart quicker.
One other thing of note she told me which I have not heard anywhere else - she said to talk to my neuro about other injection sites that can be used if the legs become too unbearable. She said there are many other places that we can inject, but she wouldn't elaborate.
I'm with Shell- I'm proud of you for doing this tough part. My MRIs showing no active lesions over the past two years is enough incentive for me to stick with it.
be well, Lu
I would love to tell you how long it will be before your body adjusts to this, but that is one big mystery. I'm thinking it was a good 6 weeks or so before the sting diminished.
In a recent call to Shared Solutions, the nurse told me that I should massage those lumps/knots, starting 24 hours after the injection. She said to do it in the shower because the wet skin is easier to rub. She said we should do this to break this apart quicker.
One other thing of note she told me which I have not heard anywhere else - she said to talk to my neuro about other injection sites that can be used if the legs become too unbearable. She said there are many other places that we can inject, but she wouldn't elaborate.
I'm with Shell- I'm proud of you for doing this tough part. My MRIs showing no active lesions over the past two years is enough incentive for me to stick with it.
be well, Lu
Hi Jess,
I'm on Rebif and don't have this, but wanted to mention quickly that I'm proud of your stamina as you mention you won't let it stop you from treating your MS. Not everyone sticks it out so -good job.
Some Copax users will chime in I'm sure w/some helpful tips for you soon.
ttys,
-Shell
I'm on Rebif and don't have this, but wanted to mention quickly that I'm proud of your stamina as you mention you won't let it stop you from treating your MS. Not everyone sticks it out so -good job.
Some Copax users will chime in I'm sure w/some helpful tips for you soon.
ttys,
-Shell
At some point most peoples' bodies recognize copaxone as a foriergn substance and have a slight allergic reaction. I was eight days into it when every reaction site I had used blew up like a peach and itched like mad. I took zyrtec, benadrl and put benadrl creme on the areas. It went away in a few days after that. A small amount of swelling and redness for a day or two is normal they do not tell you about it because folks may not choose copaxone. Oh and be careful never to go deep or near your elbow. If you hit the ulnar nerve it is quite painful.
I have no permanent marks from copaxone.
Good luck,
Alex
I have no permanent marks from copaxone.
Good luck,
Alex
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