A couple of things. First, this is a very old thread. If you want to discuss the negatives/positives of copaxone, I would suggest you start a new thread.
I totally agree that you have to find the right neuro for you, heck, that really goes for just about anything.
I totally disagree with you about copaxone. You had a negative experience w it, I am having a positive one w it. I do however think you do a disservice to people by making a blanket statement about copaxone based totally on your own experience. Like any other dmd, it is an option people w MS should consider based on their situation, with input from their dr and whatever experience they ultimately have with it.
Julie
I was on Copaxone for almost 8 years. I could not stand the pain anymore! My Nuero. would not hear of changing me. After it obviously had stopped being effective I looked for a new Neurologist. Not an easy job! I finally found one and he works with me on every question I have. I have learned that I do not have to be enslaved by my Neuro. Find one that will monitor your progress, ask questions about you,l has the same values you have, and a personell interest in MS bot just gettingh rich off of the medicine! If you cannot see your Doctor becaus eof all the drug reps they have visiting, tell him about it and then Ditch him. I do not suggest Copaxone to anyone. I still cannot sleep because of the scarring it caused! There are soooooo many options now that I would find something else!
I used to be on Copaxone when I was young and decided to get off it and then later got off of insurance and didn't have anything. Now, I am back to Copaxone and want to tell you all that the cooling the skin prior to interjection and then treat the area with a cooling pack is not beneficiary in my case as all. I found that this was not helpful at all. The pain and discomfort is short lived and does not need ice.
I have been on Copaxone for almost two months now..I have had rather large lumps on my thighs that seem to last for a while but they don't really hurt or anything. It does seem to be getting easier..th stinging goes away quicker and quicker..in fact last night i didn't even feel anything. I was asking my friend, did you stick it in yet and she said she was already done! Now however I seem to be experiencing itching in the areas but not when I do it, but a week or so later, very strange but again, nothing I can't handle. :)
I am not on Copaxone I am on Rebif now and a few years ago I was on Avonex. With both of them I have had similar injection site problems though.
I have been on Rebiff since about 2005ish. I am supposed to be rotating my in jections, but I don't. The red raised next day site injection thingy seems to happen more on my arms and upper thigh than anywhere else. I had a lump on my arm that took ov er a year to go away. The red marks usually take a couple months to subside.
I don't know how similar the drugs are. But thats my 2 cents
I had to post again on this after reading more posts. I'm glad to see that at least I'm not the only one with big welts, but I'm curious about the amount of pain I experience post 1 min to post 20 min. It's intense in places. My best spot is my thighs that I do manually full depth. It has made no sense to me because there's less fat and I'm going deeper. My arms, belly, and hips are all now reacting with big welts. The itching is terrible and comes in waves like spider bites and all insect bites do. It's like poison being released over and over. Actually mine feel like spider bites. Intense itching AND deep soreness (once the terrible burning and stinging are over) I could handle this if they didn't last so long. I have lumps (not still red and hot) that are two weeks old. The red hot itchy ones, I have about 5 bad ones now. Yikes. Jan
With the auto inject, Shared Solutions mentioned to me that I do not need to push hard with it - only need to push enough to unlock it, and then once you push the button you can ease up while it injects, not keep pushing. I think that helps. Hope it helps you!
I do like the idea of skipping arms - they are definitely a challenge and the most itchy spots for me, and belly the easiest along with 'hip'.
Peace -
Jennie
Thanks to all for your responses.
My neuro agreed with Shared Solutions and told me to stop using my arms and to add it to my abdomen. That's what I'm doing. There is another mom at my kids school who has MS and she told me how she had horrible welts too. She gives herself the shots at just below the 4 on the auto inject and that worked for her. I am doing them all at 4 and this does seem to help other than I'm now getting more bruises because I'm doing the auto inject in areas I was manually giving them. They're small bruises so at this point, I can live with that more than those painful hot welts.
Perhaps I need to practice more at angling the needle when I'm doing it manually or not push the needle all the way in? I'll get around to it. Right now, I have had no energy for days, can't focus and it is difficult to keep arms up to type because they are heavy and ache. Anamaria
I get the red hot spot that itches a day after, sometimes two days after - the worst is on the back on my arm - hardly at all on my stomach. I tried the hot pack and thought it helped with the stinging, but not the day after itch. Haven't been doing the ice pack afterwards, so maybe I'll try that - I hate having to add more steps to this process, though. My neuro's assistant suggested topical cream, and that does temporarily relieve the itching. It's strange but it seems to always itch the worst late in the afternoon, and then into the night, and like I said a full day later too! weird, huh? I have only been on copaxone since August but I would still choose itching over flu-symptoms any day. I can itch and still get things done. I hope everyone can figure out what works best for them with the least discomfort!
Peace-
Jennie
dxd 8/4/08, copaxone
I've been on Copaxone for four months and tolerating it well. The injections don't sting nearly as much as the first few weeks. I still get red welts the turn to small lumps(1"x1") in a few hours. Lately I'm finding that often by the next night, I can't tell where I injected the night before. Since my skin reactions are now minimal, I am not bothering with warming the site first, or applying cold afterwards. I also stopped using the alcohol wipes, and it was around that time that the skin irritation seemed to be decreasing. I don't know if that had anything to do with it, or if it just happened to coincide with my body adjusting to the medication.
I have been on Copaxone for over two years now and I still get the bumps. The site will swell immediately after the injection and itch for a couple hours, sometimes it will bruise, just depends on what area it is. Usually the back/hip area is the most sensitive. my legs seems to tolerate it the best. The swelling usually lasts a couple days then goes away. The injection site is hot for only a couple hours to. I quite doing the injection in the back of my arms because i also got the discoloration there and it seemed like the indentations were bad. i told my neuro that i felt like a pin cushion with lumps. I don't like using the autoject but im to chicken to not. after reading some of the posts though, i think i my try to muster up some courage and give it a try. I am tired of the lumpy / bumpy skin. I wish you good luck.
The only way to prevent the welts is to be sure the injection occurs between the muscle and the skin. I found that the auto injector did not accomplish this consistantly. The best way is to inject manually by using on hand to pinch the skin and to inject in such a way to not get near the muscle.
You might find out that you are simply sensitive to Copaxone. In which case I am not sure you can avoid the welts.
I took Copaxone for about 6 months I did not notice to much pain but I did notice my hair was falling out in clumps so I asks the dr and the pharmacy to see if they knew of this side affect .
The dr did say that there is a 20% of people that will notice hair lose and I did so I decided to stop taking it I hated it,
It did not work for me so I change to Avonex and this one is working better for me
TO:
Lulu - Thank you. I did read that you were recently DX - so good luck on the meds. I was just like you in that it took two months to dx me. Good for you to help in being a community leader. I feel so inadequate to answer questions. Congratulations.
Heather - I actually tried to elimante the alcohol after I read your post a while back, unfortuantely that did not help. It also happens whether I do manual or auto. I too prefer to stay on Copaxone but my neuro did not seem to like what he saw so I wanted to get a feeling on where i fell in reaction compared to others.
JO - thanks for giving me a reference to the size of yours. Mine have been over 5in long on my arms and close to 6x4 on my legs. For someone that is barely 5'2' 1/2 if I'm lucky, that's a large area. :)
I read an old post that Gollie had about how she blistered with one of her injections. I haven't got that bad but they have at times been so red, hot and inflamed that they look like a severe sunburn almost heading toward a blister and then when the redness disappears a few days later my skin is rough like a rug burn would leave.
I spoke to Copaxone and their recommendation is to stop the injections in my arms since I'm having discoloration in that area. The nurse said that leads her to believe its going to deep, not to my muscle but past fatty tissue. I was injecting at 4 & 5 in my arms. I am going to try 4 in all areas and see what happens. That was the recommendation for my legs too originally but was doing it manually there, at an angle.
Anamaria
Amas
I started Copax. early July .
At first the injection hurt more than now , I had slight redness and ice afterward did help . They would be red for between thirty min. to an hour .
Now the sites are usually red , slightly raised , oval shaped (2"x4") and hot to the touch, usually until the next day. Sometimes I'll have some itching .. I do get a bruise by the next day (nothing big), they last for several days . This all can happen at any place I inject. Once in awhile nothing happens ..go figure.
I hope this helps you and that you're not having an allergic reaction
Have you tried heat before the injection, I haven't but it was suggested. :)
Jo
I have been on Copaxone for 9 months. A day after my injections, I do get the red welt with the hot skin feel. I no longer use the alcohol wipes as I found these were actually irriatating my skin. I cleanse the area with soap and water or do my shot right after a shower. The only reason that alcohol preps are used in hospitals and doctors offices is because they are FILLED with germs.
Depending on where I give my injection, depends on the skin reaction. I get very slight reactions in my lower belly. The back of arms are sensitive as are my leg area, so that's where I seem to have hot welts. The area just below my waist in the butt area, seems to tolerate the shots the best.
Since I have nothing but the nuisance injection reactions to Copaxone I prefer to stay with it. I have taken one of the other DMD's and was sick for 3-4 days after the shot. I felt like hell. Three years of that was enough for me. So Copaxone is tailor made for me, until an oral medication comes out on the market.
I have my auto-injector at a depth of 6. This seems to work better for me. If you self inject, it does seem like there are fewer skin reactions. Self injecting just doesn't suit my schedule and preference.
Please let us know what you decide. And I hope you feel better.
All the Best,
Heather
I am waiting to begin Copaxone once my insurance gets worked out. I am aware of this possible side effect but hopeful I won't experience it. I just wanted to let you know I am of no help with this question, but am not ignoring you.
Be well,
Lulu
Thanks Amo,
Actually they do hurt quite a bit for those few days and the area gets extremely hot.
I hope others on Copaxone will comment. I guess I still hope it will get better because this is the only one I was comfortable with taking.
hi amas,
sooorry to hear you have this.
I only have my friends experinces....
ONe friend had what you discribe but mayabe worse. shhe hurt alot, s o stopped.
Like you itt got worse reaction as time goes on.
In rare cases there could be nucrosis. .... I think this sounds serious enough to rethi nk youur other options of medications, espepciallyyy when it only has worsening.
how about calling your neuro todaoy tell him i know he would want to know soooner then later.
hope you feeel better, amo