Copaxone and Itching: What Users Say
Reviews for Copaxone
- Neh...
- Taken for 5 to 10 years
- January 4, 2016
For Multiple Sclerosis "I think Copaxone has been great for me, no serious relapses. I went to 40 mg because 3x a week sounded better than 7, right!? I wish I had just stayed with the 20 mg, been doing it for years, never had any issues. Getting a lot more site reactions now with the 40 mg, lumps, itching, painful, etc. Talked to my doctor about going back to 20 mg, he said there is a generic available and most insurance companies are gonna try to push people toward the generic now. I might be stuck with the 40 mg. My advice would be, just stick with the daily shots."
- Meo...
- Taken for 1 to 6 months
- June 14, 2019
For Multiple Sclerosis "I was on Copaxone 40 mg for 2 months before I quit. It was my 1st MS drug; I hope I won't react so poorly to the next. For me, each injection just really hurt. It burned starting 15 - 30 seconds in, even with an ice pack. The burn was intense for about 15 minutes, then in about 1 hour, it lessened enough I could limp off to bed. Welts about 2 inches in diameter formed on my arms and thighs, and lumps formed in my stomach or the back of my hips. The welts were painful and hot for 3-7 days (thigh injections were the worst; I cried after those). The lumps itched for about 5 days after stopping hurting (about 1 day). Not to say they weren't bad too; just less so. The burning was bad enough that by the 2nd month I had my husband do the injections; I just couldn't bring myself to put the needle in anymore. Does everyone who uses Copaxone feel like this and just suck it up? Am I being a wimp here? I hope not."
Frequently asked questions
- Where and how should Copaxone be injected?
- What happens if an MS patient stops taking Copaxone?
- How long can you take Copaxone?
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- rep...
- April 26, 2016
For Multiple Sclerosis "I have been on Copaxone for 14 years. I have been fortunate in not having any more major flare-ups and have remained fairly stable. I do have the tiredness and lack of energy at times, but sometimes feel so good I can almost forget I have MS. The first 12 years were the 20 mg daily injections and had the usual problems with site injection lumps and itching. I was changed to the 40 mg 3 times per week approximately two years ago and recently went to two injections per week because the insurance coverage is changing. I am going from my regular insurance to Medicare with a supplemental plan and will not have to pay $4,000 per year out of pocket. In my opinion, I felt the best doing the 20 mg daily than taking 40 mg 3 times/week."
- Lin...
- December 16, 2015
For Multiple Sclerosis "My first MS symptom was sudden right-sided paralysis, which is very rare. I was put on steroid therapy, infusion with tapering off meds. After six months, I regained most of my motor control. I started on daily injections 8 years ago. Had the usual itching, bruising, lumps under skin. It does melt the fat under the skin also. When the 40 mg 3 times a week came out, I jumped on board with it. Honestly, I have not had any major flare-ups and the last 3 years have had no new lesions. Stick with it if you can. I know a younger woman than myself, and she would never switch from it either. Good luck :)"
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Your review helps others make informed decisions.- Soo...
- October 20, 2015
For Multiple Sclerosis "I have been on 20 mg for about 6 years. Some annoying side effects, such as itching back and feet, muscle spasms, and tingling, but could pretty much handle them. Then went to the 40 mg. Not good. For a few months, it was okay, but then the severe heart palpitations, tingling in head and face, and muscle spasms would wake me up. Neuro said it was not the meds and kept giving me something for anxiety. Nothing helped, so I figured it was me and would have to live with it. Decided to go off and see if that helped. It has been a week and a half, and I feel the symptoms fading away already. Don't know if I will go back to 20 mg or just stay off of it. I can't live with the harsh side effects of the 40 mg."
- Dix...
- November 11, 2010
For Multiple Sclerosis "I was diagnosed with multiple sclerosis 2 years ago, and this is the 1st medicine I've tried and hopefully the only! I've only had 1 relapse since I've been on it, and the only side effects I've had (other than the after-shot reaction, which I've had 2 times and isn't as bad as it sounds if you know it can happen) are redness, swelling, and itching at the injection site and weight loss (which I'm not complaining about). Sure, everyone's response will be different, just like MS is different for everyone, but I'm very happy with this therapy and got over the fear of needles quickly. Actually, I feel empowered when I take my injection."
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- Anonymous
- October 2, 2009
For Multiple Sclerosis "I have been using Copaxone for almost ten years. In that time, I have had maybe two flare-ups. I self-inject. Found the auto-inject hurt more. Skin irritation lasts less than half an hour. The only long-term side effect is a loss of fat cells under the skin, which causes slight indentations. I chose Copaxone after many hours of research and have never been sorry. I intend to continue using this drug until someone convinces me there is something better."
- dee...
- Taken for less than 1 month
- March 16, 2016
For Multiple Sclerosis "So far, doing good. Got a diagnosis of MS in January 2016. I was numb from the waist down. Took a month for the numbness to recede. I am very unbalanced. I am hoping as months pass that will disappear. My energy has not returned for me yet. Maybe it will. I am praying so. No reactions except itching on the back of my arms. That is all. I do all 7 sites."
- Car...
- Taken for 1 to 2 years
- July 5, 2014
For Multiple Sclerosis "Took it off and on for 2 years on the advice of my doctor and because of my age. I was told this was the best option for me. Had terrible deep itching at the injection site and painful welts. After stopping when I was pregnant and restarting, symptoms were more pronounced and eventually went into anaphylactic shock. Fell over, hit the side of my face, and that's when I called it quits. It's been over a year and at this point, I am choosing to stay off any of these medications. Not enough evidence to support the pros outweigh the cons."
- PJa...
- Taken for 10 years or more
- February 5, 2017
For Multiple Sclerosis "I was diagnosed with RRMS in 1993. Tried Avonex, worst side effects: body pain, pounding headache instantly. Stopped drug after 6 weeks. In 1999, had relapse: double vision, numb on left side, slurred speech, dizziness, fatigue, unable to walk without falling, my mind felt odd. Doctor at Duke University suggested Copaxone 20 mg. Started in 1999. Now on 40 mg, 3 times a week. Had relapse May 2016. I have itching, welts, injection pain, lumps, and permanent indentations."
- jac...
- January 4, 2010
For Multiple Sclerosis "I have been on Copaxone for 5 months now after being diagnosed in June. The injections are easy, but the site reactions are awful. I get red, itchy, and swollen at the site despite using heat, ice, and the various adjustments of the needle depths as directed by the nurse. I also had a really bad reaction that included chest pains and what seemed like muscle spasms coupled with electric shocks in my joints, which lasted about 30 minutes. I am going to continue for a few more months, but if there is no change, I'm going to ask my neurologist about other options. I'm glad to hear that it works for others."
- Anonymous
- January 7, 2010
For Multiple Sclerosis "I have been on Copaxone for a month now, and each day gets easier. At first, the itchiness and red welt were not nice, but now, after adjusting my injection depth and warming the area beforehand, I have very little problems with it. I inject first thing in the morning and then just get on with my day - seems like no big deal to me."
- Ste...
- December 12, 2011
For Multiple Sclerosis "I started Copaxone 2 months after being diagnosed. I was on the medicine for one month and loved the fact I wasn't experiencing any body aches, headaches, and felt fine. HOWEVER, the site reactions over the course of the 2 weeks got worse. I had hot, fiery red-colored 5-6 inch welt reactions at sites that became itchier after the 2nd week of injections. I wanted to cry because I was itching nonstop 24 hours a day. I stopped taking hot/warm showers, which helped, but I still itched 24 hours a day. I developed rashes from my neck to my face. I stopped after 1 month. I would have liked to stay on Copaxone, but rashes not located at the sites was a concern for the doctor and shared solutions team (the shared solutions team is great, by the way!)."
- Anonymous
- Taken for 1 to 6 months
- June 2, 2012
For Multiple Sclerosis "I chose Copaxone because of the liver problems that people have from the oral medication. I have been on Copaxone for 2 months now. I have had site reactions like swelling, redness, and itching. I have started using the heat before and a cold pack after my injection, which has helped. Recently, I have had some problems with numbness in my right side from under my arm down to my toes and a burning sensation from my calf down to my toes. It is probably a flare-up. I will stay on the injections until my neuro tells me to stop. Shared Solutions is great, and they are very helpful."
- Anonymous
- Taken for 1 to 6 months
- February 17, 2022
For Multiple Sclerosis "So I have been on Copaxone for about 3 months now. The injection site was bad. I got big welts and bad itching. That has gone down quite a bit. But now, as of a month ago, I have been having a very fast heart rate and having a hard time breathing at times. Also, I'm cold all the time now. Never had a problem with that before. I don't feel like doing anything. I'm always tired. And the shaking, stomach aches, back aches, and numbness in my face and hands all suck. I have also, in the last month, been having a problem with anxiety. I have never had anxiety before. I did all kinds of blood tests and a chest X-ray because I thought there was something wrong with my heart. But everything keeps coming back normal. So it has to be from the Copaxone. I'm thinking I'm gonna stop the Copaxone for a week and see if my symptoms improve. I can't take all of this. This is not me. It is driving me crazy."
- Stu...
- Taken for 5 to 10 years
- November 18, 2017
For Multiple Sclerosis "I was diagnosed with relapsing remitting multiple sclerosis (RRMS) in 2009. Started Copaxone 20 mg. Used auto inject. Had injection site lumps, itching, bee sting-like reaction always. The skin began to atrophy. Had the immediate post-injection reaction (IPIR) too many times to count. Can't breathe, flushing, back spasms, terrible headache, chest pain. Was switched to 40 mg because of lack of injection sites a few years later. IPIR was THE WORST I've ever experienced. Stopped taking it for about 6 weeks. No exacerbations since my diagnosis. While off the meds, I started having more nerve pain. My MS doctor said to switch back to 20 mg. I had a bad reaction last night with freezing, shaking, and joint/muscle pain for an hour. I have 4 injection sites left to use: hips and flanks. Don't want liver trouble from other meds. Stuck."
- Mem...
- Taken for 2 to 5 years
- December 12, 2017
For Multiple Sclerosis "I've been on Copaxone since 2015. Tried Amryia brand, it was terrible, side effects. Copaxone was slightly annoying but not bad. Recently, I've experienced a relapse and had one 3-day intravenous therapy. Tried to take my Copaxone, and the nausea was unbearable with gagging and pain in my back. My doctor told me to take a break. I'll do that. Also, the flushing and itching seem to have heightened. I'm going to try in a week and see if the symptoms decrease, if not, I'm going to have to try something else. I'm taking turmeric and multi 5000 mg vitamins. My only recourse at this time... any suggestions?"
- Gar...
- Taken for 1 to 6 months
- December 18, 2015
For Multiple Sclerosis "I'm getting 1-3 inch welts at the injection sites that are very itchy and uncomfortable. Dr. says men more often have trouble with arms and legs due to more muscle than women. No other side effects."
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For Multiple Sclerosis "I was just diagnosed in November 2014. I started on Copaxone 40 mg just a couple of weeks later. I have had all of the typical site reactions with every injection. The worst has been the itching, which I have been unable to control with anything until this last injection. I researched and have used every over-the-counter remedy. I started looking at natural remedies for itching. I could not bear to invest any more money. I came across the use of oatmeal for itching (I forgot all about that). I had steel-cut oats on hand, ground them into a flour-like texture, put the ground oatmeal in a cheap knee-high stocking, dipped it in hot water, and allowed the concoction to drain so that it was not messy but still wet. I applied it, and I experienced AMAZING RELIEF."