i have been using copaxone for two years now and seem to be getting some , well i call them bumps, under the skin where i inject. the top of my thighs and the back of my arms are real bad. i dont want to wear shorts or short sleeve shirts any more. i am doing the shot wrong? or is this a common side effect ? is this what they refer to as scar tissue build up? i know, lots of questions.
I just started Copaxone 3 weeks ago and have those lumps. Not with every injection, but most. Thighs are worst for me. Arms and butt ok so far, a couple of small lumps on abdomen. Some sites are visibly red or bruised, others I can't see, but can feel when I poke around.
I have no itching or pain other than the immediate post-injection sting.
I have no idea what the lump is, but it can't be scar tissue in my case, since they are so fresh. I'm thinking maybe inflammation due to a new foreign substance in my body? I was told the lumps *should* become less frequent as my body adjusts. Have you had this problem since the beginning, or is it a more recent problem?
Hopefully someone here can shed some light on this for the both of us.
i started getting them soon after starting the injections. they are kinda bumps, but kinda like dimples in the skin. they are noticeable, looks kinda like really bad cellulite dimples on the thighs, but the back of my arms looks like indentations. i had a home health nurse come over and teach me how to give the shots, so i really dont think im doing them wrong. just wondered if this was normal. i just cant image what my body will look like if i continue on this medication for a long time. thanks for your comments any info is great and it really is nice to hear from someone going through the same things.
Bad news about Copaxone...these welts can and will turn into scar tissue lumps, as I am told by my Neuro. They can often leave indentations in the skin that are permanent. This is all from my Neuro. Shared Solutions, will not admit to these kinds of side-effects.
I have been on Copaxone for almost 7 months now and I can no longer inject my thighs. Too much pain, stinging and huge welts with slight bleeding. So now I am staying away from that area. My butt and my belly seem to have less reactions of any place. The back of my arms can be pretty painful but I endure them, before I run out of places to inject. This is one of the huge draw backs of Copaxone. Having to inject every day. I only chose Copaxone because it doesn't have any over-all body side-effects after the initial injection reaction.
So db, I am afraid that is part of what we have to endure when we take Copaxone. I personally think that the auto-injector is very hard on the skin. If you set up the injector without the syringe and test fire the injector, you will see how HARD it actually slams the skin. When I look at my needle AFTER injecting, I can see that it is not in the middle of the barrell, but off to one side. I think that is the way it is going ito the skin. Hence the bruising and welts. It's not going straight in and it's also smacking the skin hard, from the injector.
That's just my opinion. My Neuro says that if I start getting the indentations, she will take me off the Copaxone. I don't want to look like a Waffle, for the rest of my life.
i agree with you on the auto-injector, very hard. have you tried to give yourself shots with out it? i have a couple times but this is still very hard for me to do. not sure if needle is suppose to go in all the way in all places????
I have the autoject set for the shallowest setting. All my injectable areas are now lumpy and dented. Copaxone does something called lipoatrophy, which means that it starts to eat the fat in the injection site. Looks terrible, doesn't it? That plus the lumps... sigh... guess my bikini days are over (never begun!)
I have been taking copaxone now for about 6 years. Sorry but it doesn't get any better. You can pretty much notice any place I take an injection by the bruises and the lumps. I guess we have to take the good with the bad. I find my "love handles" the toughest spots to put my injections so I skip those everyother week to give them a break. Happy injecting!
Hello everyone. If I may jump in with a question. I just started taking Copaxone three weeks ago and over all everything is going OK. I do get the stinging pain and discomfort right after but am doing ok within 15 minutes. However, i feel tenderness in the injection site whenever i touch that spot, like putting lotion on my body. It's tender a weak later. Will this lessen with time or is this how it will be.
Unfortunately I already feel lumps or thickness of skin in my arms. That's not a good thought after only three weeks.
The lumps will last about a week, maybe two. It's common when people are just starting the injections. They always itched and burned, and if I scratched them too hard, I'd get a blood blister at the site - real attractive!
But they will go away, only to be replaced by scar tissue and lipoatrophy. That's why they want you to rotate the sites. Doesn't help a whole bunch, though.
Any idea whether it is worse when injecting into less fatty or more fatty areas?
Also, should you go as deep as possible...or at the shallowest setting? So far I have tried both and not noticed any difference.
I will experiment and try without the auto-injector, but it seems to me it is the medication itself. I previously used the Rebif autoinjector, which is pretty much identical to the one for Copaxone, and I never had lumps. It seems to be specific to the glatiramir acetate.
I'm now having quite the itching lump on the back of my arm - this is about the 3rd week that it has happened. My other injection sites don't really bother me. But today, the day after my right arm injection I have a BIG itchy bump that is hot and pink - not very comfortable, but not painful, just itchy like all get-out! I expect that my left arm will be the same tomorrow, since that was today's injection site. Anyone else getting this DAY AFTER issue? Any suggestions for helping with the discomfort other than allergy cream? My neuro's physician assistant suggested that, and it helps a little. I also have been using heating pads beforehand on my thighs and am wondering if that is why I don't get such a bad reaction there - harder to take the time to do that for my arms since I have to stop everything I'm doing to hold a heat pack on the injection site - can just have it lay on the top of my thigh without any effort....
I am just coming to the end of my first week on Copaxone and have also experienced the discomfort after the injection. I'm just to waiting to see what side effects will pop up from the cumulative injections. Right now I do get a burning sensation immediately after but I have been applying my ice bag and get immediate relief. I haven't tried the heat pak prior to the injection.
Hopefully someone out here will have some more suggestions and answers for you and me.
Ewwwww Copaxone (shiver, shiver!!) - Sorry lol I was allergic to the Copaxone and used to have really bad reactions to it that were more serious than a few lumps and bumps and indentations....lol Anyway, now I am on Beta Seron every other day injections, and also have the 'indentations' that you all have talked about. No lumps and bumps though. A buildup of scar tissue I'm sure. Wonder what happens when you DO run out of spots to inject. I dont inject my 'love handles' at all because they just hurt too much from when I was still using Copaxone. My upper thighs and abdomen have, I'm sure, permanent indentations though. My abdomen looks like someone is pinching it on either side....lol It looks ugly, but it is just something that has to be endured with a smile. :-D
I've been using Copax. for three mon. . I get the hot itchy red spots too. I use ice after and that does help with most of the reactions .. I'm wondering if calamine lotion or itch cream would be effective..
All we can hope for ladies, is the pill form of the DMD's that was SUPPOSE to be released some time at the end of this year or beginning of the next. Couldn't come too soon for me.
Keeping hanging in there. These injections are all we have to try and prevent further damage from this disease. Maybe we can all get cosmetic surgery after the pill form comes out and have all the pocks removed and start over the smoother, less scarred skin. I think the DMD makers should have to pay for our cosmetic surgery. Whatcha think girls? Sounds like a plan to me.
Having been the Copaxone route with horrible allergic results, I've now been on Avonex for 4 months. Although the shots are really deep and kind of awful to do because of that (no pain at all though), there are absolutely no lumps or bumps or other site reactions.
I'm lucky to have learned how to minimize the flu-like stuff that comes with Avonex, so it's all working out for me. Looking back, I think the Copaxone people were almost deliberately deceitful during my many phone calls to them trying to get the shots going without such awful reactions. It seems that virtually everyone has trouble. Not as bad as mine, but still worrisome. I'm wondering if we have a single member who has no site reactions to Copaxone.
I couldn't agree with you more....lol I heard about the oral medication for MS. I actually received something in the mail regarding clinical trials. The problem with participating though is that you have to have not been on any sort of treatment, I believe, and have to have had (again, don't quote me on this) a relapse with in the past two years. I didnt keep the information I had received because I am on treatment and havent had an MS episode in awhile.
I wonder though - if you are on a specific treatment for MS, and it seems to be working, other than the convenience of NOT having to give yourself injections, would you be able to switch to the oral drug? I guess probably you would because at one point I had been offered the option to be put on the once a month infusion drug Tysabri.
It won't hurt to try lotions, but if you're like me they won't do any good. I tried liquid Benadryl, Spray Benadryl, poison ivy stuff, and various strengths of anti-itch cream, including prescription. Also tried several allergy meds. Nada. Nyet. Zilch.
I am on my second week of Copaxone injections and I have to say, this *****! My first time with the nurse there I used just the needle without the autoject and Im sure I hit my muscle because the pain was horrible and lasted quite a while. Since then I have been using the autoject. I also did my stomach for the first time and also hit my muscle with the autoject. The pain for me is really bad. I cant move for almost an hour. I have decided not to do my stomach anymore. I am skinny and obviously dont have enough fat in that area. When I first inject I get weird lumps that last about an hour until you cant see them anymore but then you can just feel them and my spots stay sore for days after. I really hope they can come up with something else, i hate doing this to my body.
I've been manually injecting Copaxone for 4 weeks now- and so far it seems to work well, stings after the shot and I get a small red welt, but that is always gone a couple of hours later, the next day it looks completely normal again.
Could that have to do anything with manually injecting? Also, my MS nurse told me to use only half the dose due to being a small size person.
I'm hoping that this is not just me being extremely lucky but that it has to do with not using autoinject??
I've been on copaxone for roughly 3 months now. My neuro switched me from beta seron because he thinks my body developed antibodies to them, so the medication wasn't working for me like it used to. I've tried Avanox and it was terrible for me. It was great because it was one day a week, but I felt like crap for 1 to 2 days after taking it and I couldn't take it no longer. I have the same bumps and try to get my fiance to rub them to try and break them up when they start getting to big but it doesn't work too well. If you ice after your injection, it helps with the itching and burning though. Ice for about 10-15 minutes.
It's OK to rub the lumps after 24 hours. Actually it's a good thing because it helps to disperse any medicine that is lingering at the site and will help prevent the development of permanent scar tissue at the site. My injection training nurse said a patient had shared with her to use bar soap in the shower to rub out the previous days injection site. It works pretty well.
Can we take further Copaxone questions and comments to a new post now please? Some of this information is not terribly accurate and almost all of it is quite dated.
I am currently trying to decide which injection to start and it is all very confusing. I had decided on Copaxone just because there were no flu like symptoms associated with it. Now wondering how it will go with the injection site. I did see a youtube video post on injection techniques with copaxone and it showed you must remove the air bubble before injecting and by doing this it greatly reduced the stinging. Might be worth a go. Can anyone tell me whether the avonex injection cause the same injection site reaction, saying that it is only once a week but you also have to deal with the flu like symptoms. This is becoming a very difficult decision to make! Any help advice really appreciated. Thanks Heather
I have tennis ball size welts that itch terribly have been on Copaxone autojec for 3 months. I didn't have this problem the first month but this is unbareable. I tried heat first, then cold, and all the suggestions by Shared solutions. I have tried all itch creams to minimal benefit. I am miserable.
These injections for the last 7 yrs have left my body with pockets and divets all over. Fat tissue desolved and looks disgusting. I have to now figure out way to reduce this terrible disfigurement. I have worked out my whole life and I am now off the injections. I now feel like I need plastic surgery to repair all this damage. The neurologists or share solutions should advice patients to have their doctors examine the sites at least every 6 months. Guess no bathing suits for me anymore. I am going to find an attorney who will work with me on this. Please be careful. These shots cause permanent damage.
At least your doctor was aware of this. I just went off copaxine today after 7 years. No one had asked to see if my body was being scared, fat tissue desolved. All my years of work out time seems worthless now. I am very angry. I feel that plastic surgery (fat replacement) is necessary. I am going to look into getting legal help. Any suggestions?
I haven't been on the site for a very long time but when I saw the post about Copaxone bumps I had to comment. I've been on Copaxone for about four years now. I was told about the lumps and the dents that were caused by destroyed fat tissue. I just hoped that I could spread out the destruction over my whole thigh and therefore have smaller thighs - RIGHT. They look like washboards now and even my stomach has these b ig indents. And itch! When I first started, the sites would itch so bad the day after that I thought I'd hurt myself scratching. I play bingo on Thursday. Wed was my belly shot. I was so embarassed at bingo because I would itch so bad I'd finally have to scratch down the front of my pants. I'm sure people thought I had some kind of disease. Finally had to change the order of sites. I know its not really funny but doesn't it help to laugh? Anyway, most of the itchy, red, painful stuff stopped after a while. In fact, my legs and arms seem kind of dead now. I can't even feel the needle going in.
i am new to this site . my husband found this for me last night. i am confused on your nurse telling you to use half the dose of copaxone because of your weight. when i started my copaxone i weighed 100lbsand i use the whole injection and my nurse toldme to make sure all of it is used to get the full effect. im wondering if thats why i have so big of lumps after my injection. and it hurts so bad.
So glad to see posts about Copaxone and disfigurement. I've been on it for 9 years and my legs (used to be a best feature) are hideous.
Best area for me has been upper hip. Stomach and arms too painful. My docs still don't want to change meds.
I'm with you, on the plastic surgery. Heat before injection, massage and ice after, wasted time and auto-injectors did not help.
I too, will speak to my doc about this because it needs to be on their minds when advising patients, I believe.
Am interested what an attorney will have to say. Do keep posting.
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