Just joined, though I'd say hi. My name is Alicia, and I was diagnosed with Multiple Sclerosis in April of this year. I'm currently taking 40mg of Copaxone 3 times a week (but the injection site reactions have been pretty bad, so I don't know how long I'll stick with it.) The worst of the ongoing symptoms I've had so far is just the unrelenting fatigue, and the bladder issues. It's hard to get much done when I get home from work and just want to sit, and take a nap.
I hope everyone is having a great day.
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acguinn0215
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Thank you! I've told my Shared Solutions nurse and my neurologist about the reactions. We're going to give it about 6 months (November) to see if it gets better, then talk about changing medications. I thought it was getting better there for a while, but the reactions seem worse again now. But I never miss an injection!
I've heard about various medications that supposedly work better than Copaxone, but I've also heard that their side effects can be hard to deal with. So in a few months, I guess I'm going to have to decide what I'd rather deal with.
I did the warm compress before and cold after for a while. I don't believe I ever did a warm one after. But during the time I was doing the cold before and warm after, the reactions were getting worse, so my Shared Solutions nurse said it apparently wasn't helping, so I should try not doing the compresses.
Welcome! I take Copaxone, too, and am fortunate that, over time, my reactions have minimized. My technique has improved as I’ve learned what works best for me. Using the correct depth has helped, as has injecting right after a shower, immediately applying an ice pack for at least a minute or two, and then immediately applying cortisone cream. I switched to a name brand cortisone cream, which oddly worked better than the store brand.
I hope things work out for your Copaxone, but if it doesn’t that you find something you tolerate better.
Do you use the Autoject pen? I started off using it, but it hurt quite a bit when I used it, so I switched to injecting manually. I know that I have to inject some places at more of an angle and other more straight, since I don't have the Autoject to control the depth.
I tried using warm compresses before injections, and cold packs after. I tried cortisone cream. I think I tried some other sort of cream too. It didn't seem to make a difference for me. My Shared Solutions nurse actually told me I could stop doing the compresses, because it wasn't doing anything for me.
I've recently been trying some roll-on lidocaine liquid, but it isn't doing anything either. The itch is too deep. I may be having some kind of allergic reaction to the medication, or some additive that is in it.
I'm glad your reactions have minimized. Maybe there is still hope for me!
Yes, I use the Autoject. I had some problems with it at first since I have practically no body fat, except around my middle. The angle does make a big difference. The area of injection makes a difference for me, too. My arms get very red, but don't usually itch. My abdomen itches more than my arms. I did it manually a few times to get a better angle, but it's too hard to me to reach many areas.
I wish you well finding something that works well for you. It's a frustration we could do without!
Too bad you had to gain membership to this club. The dues can be pretty high on the emotional side, but this is a great place to talk about it. Fatigue is one of the most prevalent issues I face. Walking more than a block has become all but impossible. I wish you well and hope you will be able to help others in their struggles.
It's too bad that anyone has to gain membership to this club. But I'm glad to know that there are so many online forums for people to get support and information!
I used Copaxone for about 10 months (switched because new lesions indicated it wasn’t working for me) and am now on Rebif for about the past 14 months. I really hope the Rebif does the job because the injections don’t bother me one bit! It’s the same 3/week schedule as Copaxone but, at least for me, none of the difficulties. I can’t speak to any other injectable but there’s hope 🙂
Hi there I am glad to meet you but I wish we hadn’t met like this. Yes this disease is very tiring I am on Ocrevus i September it will be a year on it. I have been diagnosed for 14 years. Just try to think positive and keep your body moving not to the point of getting worn out. This s good site to ask questions, listen but do remember we are not doctors.
You should let your doctor know how it is going with your injections he may have some trick up his sleeve to help you.
Nice to meet you all, under these unfortunate circumstances.
Sandra - I have told my neuro and my Shared Solutions nurse what was going on with the injection reactions, and showed them pictures. They've both said it's ultimately up to me on if I want to stick with it a little longer and see if it gets better. So I gave it the 6 month limit, which will be November. If it is still really bad by then, there will have to be more conversations about switching medications.
I don't mind the injections at all. It's the constant itching and giant red welts that are driving me crazy! Lol.
Well Alicia it’s sometimes hard to think about switching medicines because of what it’s physicaly doing to you compared to if it is helping the disease. I was taking Avenx (I think 🤔 that’s the spelling) which was an injection of once a week but it was just making me feel sick and the doctor had asked me if it was working I said that it was just making me sick and he told me to stop so what Your doctor is saying it’s up to you what you want to do. Good luck have a good weekend.
Welcome! Copaxone was the 2nd med that I was on. Tecfidera was the 1st. Both gave me bad reactions. Now I'm on Aubagio which I really like. If it's not helping you feel better, I'd say it was time for a talk with your neuro about different medicine options. Good luck.
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