Copaxone and Pain: What Users Say

• 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."

• cpk...
• Taken for 5 to 10 years
• July 28, 2015

For Multiple Sclerosis "I was diagnosed with MS 10 years ago by MRI after many falls due to foot drop, around 2005. I took Copaxone from 2009 - 2011, 20 mg per day. It didn't help, it didn't hurt. I stopped because my insurance wouldn't cover it anymore. I've had regular symptoms over the last 10 (or even 30) years, they have gotten progressively worse the last 2 years. I got back on Copaxone about 4 months ago, 40 mg 3 times a week. I don't think it is helping. My site reactions are worse than they were with 20 mg daily shots. I have gotten to the point where I can barely walk without pain, weakness, and shin splints from the muscle weakness in my legs and inability to walk and balance properly. I take Copaxone ONLY because I'm afraid not to. Good luck."

• kat...
• Taken for 1 to 6 months
• May 11, 2014

For Multiple Sclerosis "Medicine appears to be effective. Injection sites are painful after injection, injection sites must be changed daily. Most approved injection sites cannot be reached by user, therefore, requiring assistance."

• igo...
• Taken for 2 to 5 years
• July 5, 2021

For Multiple Sclerosis "One can't really rate an MS DMT, as MS is unpredictable (never know how you'd be without the DMT), so I'll weigh 3 criteria: effectiveness on phase 3 studies (not much), how controlled my disease is (well), and my side effects (very minor). Since I started it (08/2018), only a tiny new lesion appeared, and muscle rigidity became a bit more pronounced, so I plan to stay on it. Side effects were none from the beginning (except for my horrible 1st injection - went too deep). With time, I stopped caring about syringe temperature, compresses, etc. But switching from 20mg to 40mg caused pain, some blood, bruising, etc. However, a decent procedure made it fine again (I now take it out of the fridge >30min before and apply a cold compress for 1-2min AFTER). Great 1st treatment if your MS seems milder (otherwise go with a stronger DMT like Tecfidera or even Gilenya). And, of course, switch to a stronger one if you have relevant disease activity while on this DMT."

• daw...
• Taken for less than 1 month
• October 5, 2013

For Multiple Sclerosis "I have been on Copaxone for a week. Side effects give me severe stomach pain, back and side pain, and vomiting. I'm going to try to get through it this weekend. If symptoms persist, it will go in the trash, and I will have my doc give me something new."

• Lin...
• January 24, 2017

For Multiple Sclerosis "I started taking Copaxone in mid-August 2016. The first 3-4 months, I didn't notice any real difference. After the first few weeks, I didn't have any more site reactions. For the last two months, I'm experiencing terrible joint pain. Leg cramps in the middle of the night; my hips are stiff, and my shoulders hurt. Just a little while ago, my hand was shaking so bad. It's scared me. So here's the thing - I'm not experiencing any of the other MS symptoms that I had before taking Copaxone. Gone are those electrical shock sensations; I'm not really more numb, the weird feeling that runs down my spine. It seems like I've traded one set of symptoms for another. Before Copaxone, I enjoyed exercising. Now, not so much. :("

• Ana...
• October 13, 2010

For Multiple Sclerosis "I've been on Copaxone for 2 years, and symptoms have gotten worse. I guess there's a reason the side effects make it so appealing to everyone. My doctor is finally changing it to another medicine, unfortunately due to severe liver side effects. I am in so much pain and fatigue every day, I've lost so much of my life, my job, my social life. Trying to overcome this monster."

• jer...
• July 31, 2009

For Multiple Sclerosis "I have been on 3 different MS medications. Avonex was the first, and I loved it. My husband gave me the shots. I had to stop because of insurance reasons. I later went on Betaseron, and I loved it too, no problems with my MS on either one of them. I had to stop it because I got a blood clot in my left leg in January of '09, and my doctor said it could be from the Betaseron based on side effects, so she put me on Copaxone. It is the most painful of them all, where I take my shots from one week till the next. I am still in pain."

• Gil...
• August 20, 2017

For Multiple Sclerosis "Doctor and I, together, decided to begin Copaxone 40 mg after having been on Copaxone 20 mg for 6 years, Gilenya for 6 years (survived viral encephalitis after this drug). Almost immediately, my joints began to stiffen and became painful... so much so that lifting and using my hands is very difficult. It feels like I have arthritis in my joints. The nurse and the MS clinic informed me this is a 2.7% reported side effect. Now trying to detox my body."