Hey there. Welcome to the forum. We DO want to help.
I went through that same thing some years back. Horrible welts, rashes, lumps, bumps and hives. I tried every remedy known to human kind, as you have, but things just got worse and worse. The very worst was the itching, though. It drove me completely nuts. I lasted 2 months, slowly going insane.
I knew that Copaxone causes skin reactions in most people, but this was way over the top. My neuro decided I was allergic, and took me off it. A while later I started on Avonex, which for me was much more manageable.
Forget Shared Solutions. They won't do anything helpful, and seem to operate off a script. In your shoes I would see your neuro ASAP. Show him what you're contending with. It's easy for him to say that Copaxone has the fewest side effects--he's not dealing with them. Blanket statements like that are maddening.
There are other meds you could try, including several oral ones, which are pretty new on the market. All have trade-offs, but nothing is written in stone.
There are also other neuros out there ;-)
Thank you so much! I was hoping I wasn't the only one out there experiencing this, so it feels good to hear that I'm not alone. It also is becoming closer to summer and I'd hate to have to wear a berka swimsuit to cover up all the awful welts.
It's funny that you mention the allergic reactions because my mom and co-worker, who are both medical assistants tell me that it looks like an allergic reaction due to the swelling and apparent cellulitis. I have a follow-up appt with my neuro on May 23rd, but perhaps maybe I should move it up. The other worry I have is that I don't want to have those flu-like symptoms for months on end. My friend had flu-like symptoms on beta-seron for about 4 months straight.
Luckily, there is another neuro in the area that is good so I can definitely switch if I need to. Thank you for the good advice. :)
Anytime! I have sensitive skin and other allergies as well.
The interferon drugs don't necessarily cause the flu-like stuff, and if they do, often this abates within a few months. For me, I had those effects, but I learned to manage them quite easily, by doing the injection before bed, also taking an Aleve or two and going to bed. That way the reaction, if any occurred while I was in lullaby land nearly always.
People's reactions vary, though, so some manipulation of the timing can be needed, trial and error.
Soon I expect to start on Tecfidera, a very new oral med that shows great promise. No injections at all.
I'm pressed for time so this will be very short - and perhaps less than sweet. My apologies.
A large part of the success of any disease modifying therapy is compliance. If you are having this much trouble despite many attempts to make it work my guess is that it won't be long before you begin to forget (or straight up skip) some doses.
MS disease modifiers are extremely important if we're to have much success exerting some power over MS (not to mention very expensive). If Copaxone isn't working for you after what seems like a well intentioned and adequate trial..... ask for a change.
I can't imagine a MS specialist wouldn't entertain the idea. If that really happens you DO need to find someone new. Someone who includes YOU in a team approach to treatment.
Hi, I so hear you. I just stopped it after 13 months, because of the same type of things. There are things out there that work, and apparently, as well, or better. My neuro did not think that it was helping my SPMS, and basically told me it was my decision to stop or not, but he would recommend it. Because I have the atropy and dents in the skin, especially on the backs of my arms, and my thighs.
I to found out that cold, and hot compresses did not work to well for me. But, I did find that the reaction was less when I manually injected opposed to used the Auto Ject......
It is important to fight this disease with all that you can, and sometimes things like this is all we can do, and it is so important.
Good luck , and where are you living? I am in Canada, and Shared Solutions did not help me much either.
I'm not going to lie, I have dreaded my shots so much that I contemplate just skipping them, but I know how important they are. Is 2 and a half months an adequate enough trial? It's felt like years to me with the constant raised welts. I can even see the thigh ones through my pants most of the time... I have "probable" RRMS, specifically so because I did not need to get the lumbar puncture quite yet. I remember reading somewhere that Copaxone was one of the only drugs you could take for "probable MS".
You are very right. Before this, needles were not my friend but I've since been forced into a working relationship!
I live near Milwaukee, Wisconsin, and my assigned Shared Solution nurse for the area is nice and all, but almost never returns my phone calls and when by chance he does, there is at least a week gap in between me calling and him calling back : /
I started on Copaxone, and I had the horrible itchy lumps, too.
The Shared Solutions nurses told me the same thing, it wasn't the Copaxone.
I called my Medco pharmacist, and she looked it up, and told me to call my MS Specialist immediately. Sh said it sounded like an allergic reaction.
My MS Specialist examined me, and she was appalled by the injection sites.
I went through liver enzyme tests two weeks apart, and then she started me on Rebif.
Ask your neurologist about this and show him/her the picture. I had larger reactions even bigger than that in the first few months . . . Don't think very single time I had huge reactions, though . . .
I don't know if this will help (sounds like you've tried just about everything), but here's what helped me a little bit. It still took abut three months for the reactions to start to go down gradually, though.
I experimented with injecting in different ways (speed of injection, depth, etc.). i did stop using the autoinjector. My husband gave me the shots for the forst year. I found that the autoinjector just went in too fast. The medicine pooled underneath my skin. Another thing I did was to use a hair dryer to dry the alcohol and heat the area. I still use this method. For really bad reactions, I put a cold gel pack on the area (which I never get anymore).
There were times, though, when nothing I did made a difference in that first three months. Eventually for me though, the reactions faded. Now you cannot even tell where I give myself shots.
If you have huge reactions like these with no hope of diminishing, though, Copaxone may not be the right medicine for you. However for me, I've had great success on it. My neuro said that more than likely Copaxone will be administered at double the dose only three times a week. When this happens, I'll be the first in line to get it...
I've had issues like this too. Then I've also gotten hives at injection sites from the last couple of days, but not at the site where I just injected. I was on it for almost a year and then stopped. During that time the sites seemed to get worse with time. It got so unbearable that I was having anxiety attacks everyday when it was time to do my shot which then led to me skipping doses.
I started again after a 3 month "break" (I don't suggest you do this, my symptoms got really bad during this time). Any ways... I changed a couple of things at the same time which one of them seems to have helped. I do my shot in the morning now, maybe the med absorbs more since I'm moving so much during the day. I also started taking Claritin again for my allergies. I do take benadryl every night and that didn't ever stop the swelling or hives. I also drink a decent a mount of coffee in the mornings, not sure if that could help or not. I know caffeine is suppose to help with headaches. I'm not a doctor so I have no idea if this really helps, but I think caffeine is suppose to dialte you blood vessels, maybe?
I can tell you what I have learned though. I was on rebif before the Copaxone and it would leave rashes about that big on me for 2 weeks and there autojector thing almost always left a bruise. If you have heat intolerance, the last thing you will care about is bruises, rashes, hives, or lumps. I now take every opportunity I can to wear a bathing suit or dress.
Btw way if you live somewhere hot, sports bras or no bra really help in the summer.
The hot/cold never seemed to help me either, but the cold feels good when your hot. So use a bag of frozen berries or veggies instead of an ice pack. They form to you skin better.
Calamine lotion for me works better than any hydrocortizon cream when I'm itchy.
If you have ever had a tattoo you know you're not suppose to scratch it while it heals. So take the same approach. If you haven't had one, you're suppose to lightly pat/slap it. It make sound weird, but it does help if the itching isn't to bad.
Quitting using the auto injector has been one of the best things for me. I can't do all the sites by myself. So try to have someone help you. You can get retrained if you need to. I don't think it hurts as bad and I rarely ever get a bruise this way.
I hope you're able to get relief. If not talk to your doc. Maybe you would do better with one of the interferons. I didn't do well with Rebif, but I've read where a lot of people have done great and really haven't had any side effects.
I have played around with the depth settings and nothing seems to work. I can certainly tell if I'm too shallow or too deep by the change in itching/pain. As for manual injection, I'm too much of a baby to attempt it. Plus my shared solutions nurse flat out refused to show me how to do it. I'm also pretty alone so u don't have anyone available to give me the shot.
I'm seeing the neuro on Tuesday so I guess we will see what happens. Thanks for the advice.
Those of you on other meds, how do you like the ones you're on?
Hi. Taking some type of OTC allergy medicine works for me. At least for the itchiness and the warmth. I have (had) a similar reaction. I've been on copaxone for about 1.5 years now and I only get those lump things on my leg. In my case doing it manual helped a alot.
So to update you all, I saw my NP in my neurologist's office and she told me that it's very common for people who are very fair-skinned (like me) and have skin allergies to have a terrible skin reaction to the copaxone. She is so awesome. She took the time and explained to me that the burning of Copaxone is due to the medication being at a pH level between 1-2. For those of you who don't remember pH, 1 is the MOST acidic something could possibly be. Definitely explains all the burning since your body likes to keep itself moderated at about a 7.3, which is average. Rebif/Avonex is at about a 2, so it's about 10 times LESS acidic than Copaxone, and Beta-Seron is at exactly 7 because you have to mix it up.
The options she gave me was to try the Benedryl cream more vigorously for the next few weeks and then if it's still an issue she gave me a couple of other medication options to think about.
1. Gilenya was her first suggestion, and she stated that I would be a good candidate for it. Since the medication is new-ish and there have been some wary things that happened with the people that are on it, I don't know if I would necessarily go with that.
2. (and 3. technically) Avonex, but maybe Rebif if I preferred that method better. From what she said they are exactly the same, just different dosages. I just am not sure about the flu crap. I'm a full-time student and can't miss class for that. Maybe since it will be summer it will be a good time to start it. I'm leaning more towards this option.
4. Tecfidera, the brand spanking new pill. I am leaning towards this the least just because it is so new and the effects aren't completely known yet I suppose. She had told me that she has a few patients on it and they all complain of constant stomach upset and diarrhea.. Like I need that on top of everything else!!
So I guess the decision is mine, but input would be appreciated. For now, the Benedryl cream is doing about as good as toothpaste would do on the welt. Absolutely nothing :/
My site reactions were as bad or worse than the one in your photo. It took a while, can't recall exactly how long, but they did subside for me. I've been on Copaxone for five years now, and have little to no reaction, the lumps don't last and I rarely get that horrible sting anymore. I hope this is the case for you but if not, I hope one of the other options works for you.
My MS Specialist put me on Rebif, after we learned that I was severely allergic to Copaxone.
It had raised my liver enzymes, so she re-tested every two weeks, until they were back to normal, before she prescribed Rebif.
I didn't get any reactions to Rebif, at all. A headache the morning after, which was resolved with a cup of coffee. No site reactions.
The Rebif pen is adjustable, and my MS Lifelines nurse had me set it at 1.
If you choose to go with Rebif, stay away from the Rebidose injector, if you are thin. It is not adjustable. It is set at 2, and because I am so thin, I only have a few areas, that I can inject.
I have 5 shots left of the Rebidose, and I am taking time off, after I finish it, until I see my MS Specialist 6/27, and find out if I can use the Rebif pen again, or if I have lost too much weight.
Good Luck, in whatever you decide.
Hello, I started copaxone 4 weeks ago, after the first week I started to get flu like symtons so I phoned my ms nurse who told me that she didn't think it was the copaxone and to carry on with it. After a couple of days the flu like symtons disappeared and I was left with big reaction sites and big lumps under the skin, I showed my ms nurse who said they were bigger then normal but yet again to continue. That night I took my injection and within seconds I couldn't breath, my heart was racing, had shakes all over, stomach cramps and face ears and throat swelled up so much, my partner phoned an ambulance, thw ambulance man said that it was a servere reaction and discontinue use. I phoned my ms nurse this morning who said that I would appear to be allergic (what a genius) but then asked me to go to my doctors surgery to take them, is she serious like I would ever inject that into me again. Has anyone ever experienced these side effects before?