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    Old 08-06-2008, 09:58 AM   #46
    Shelly7630
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    Re: Copaxone & Hives or Bad Reactions

    Let me know what happens.

     
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    Old 08-06-2008, 10:05 AM   #47
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    Re: Copaxone & Hives or Bad Reactions

    Shelly, I hope by now that you are feeling better. I was on the Copaxone twice. The first time for about 2 1/2 years with no complaints other than the injection site lumps. I restarted the copaxone in Sept of 07 and from the very first injection I noticed a big difference in the size of the injection site, the redness, and the itchiness. I continued taking copaxone for another two and 1/2 months, which found me at the end, completely broken out in hives, itchiness all over my body, the injection site lumps would take 9 or 10 days to disappear, were very swollen, very red and very hot to the touch. the itchiness drove me nuts, keeping me away at night, and bothered me throughout the day as well. I wore 100% cotten clothing, and found that heat just aggrevated my itchiness. I too was recently asked if i wanted to go back on the copaxone, but after it took me the better part of four months for my body to have settled down after this allergic reaction, I am scared to even try the copaxone again. I hope you can find another med that you can tolerate better! Pepper55

     
    Old 08-07-2008, 09:18 AM   #48
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    Re: Copaxone & Hives or Bad Reactions

    Hi Pepper, After the hives you stayed on the copaxone? I cannot imagine. What are you on now? I wonder if the ingredients in the copaxone have been changed as I' am hearing about more and more people having reactions to it. The site reactions where always prevelant but the hives are stated as only happening in about 2 percent of patients. I' am still considering the Avonex, (still waiting for them to send it to me) but I have to say once again that I' am scared to death. The reaction I had to the copaxone scared the heck out of me. I feel pretty good now and the thought of having flu like symtoms is not appealing to say the least.

     
    Old 08-08-2008, 07:17 AM   #49
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    Re: Copaxone & Hives or Bad Reactions

    Hi Shelly, I can understand your uneasiness about starting a new med after your reaction to the Copaxone. Yes, I continued the Copaxone despite the reactions because first the reaction was centered around the injection site, gradually the more I kept taking it, it began to spread to the other parts of my body. This caused me to nearly go nuts, staying awake every night because of itchy soles of my feet, and itchy toes. The neuro I was seeing refused to accept that the Copaxone was at all related to the itchiness. I ended up having to take antianxiety meds to calm down the wreck I had become. Yes, I also wonder if they have changed the formulation of Copaxone, because I certainly did not react this way the first time I was on it. Currently, I am not taking any of the MS meds. This is certainly not something I advocate for everyone, but seeing as how I have dealt with this disease since 1983, when there were no meds other than prednizone, I have managed to do pretty well without treatment. I am currently in one of those "wait and see" modes, and so far so good. I did try the Avonex, but recemtly discontinued that one as well. I am reluctant to say more about the Avonex, because honesly Shelly, all of these meds are different for each one of us. Our reactions are different, our levels of tolerance are different. My best advice is to trust in your decision to go on the med, and keep an open mind, and stay positive about it. If it ends up not working for you, you always can change to something else, but at least you know you tried it. I have heard some good things about Rebif. Have you looked into that? Good luck Shelly, I hope things go well for you! Peppper

     
    Old 08-11-2008, 04:06 PM   #50
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    Re: Copaxone & Hives or Bad Reactions

    Hi Peppper, Thanks so much for your honest response. I just elected to start back up on meds again after being med free for a few years. I went off of them because I was a walking pharmacy to say the least. I was on meds to keep me awake, to put me asleep, to keep me calm, to help me thinking straight, to stop pain...so on and so on. I was amazed how different things where when I went off of them! (scary world Anyhow, I went back on neronton for some nerve pain and of course the copaxone. I had a MRI done in April and presented with a few more lesions, that is why I decided to try injections again. I just hate the thought of feeling the side effects but hate the fact that the MS is destroying my body. I always had the attitude that if there is no cure, why mess with the drugs. It is a catch 22 I think. I have started a vitamin regimen and have to admit it has made my energy level go up. Taking vitamins is not hard to stick with as you normally do not get any bad reactions. I will give the Avonex a try and if that does not work I will probaly end up trying rebif. I tried that for a short stretch years ago and it was not a pleasant expercience. I would really appreciate it if you could share your avonex expercience with me...good and bad. Hope all is well with you!

     
    Old 08-11-2008, 04:37 PM   #51
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    Re: Copaxone & Hives or Bad Reactions

    Hi Shelly! If you ever have any questions about Avonex, let me know! You know I'll be completely honest. My last injection nite, Friday, was PERFECT. But it took a long time to get it that way. Plus, the length and the severity of my side effects are not normal, according to statistics, so it may work well for you. The best part of all is that it's once a week. And if you decide you want to try Rebif in the future (I might too) MSNik (Nikki) is a good source of info.

    Pepper, hello to you too! I'm so glad you're here, and I think with your experience and your stellar attitude, you'll be a huge asset to the site!
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    dx 9/07
    Avonex started 11/07,
    Stopped 4/10 due to no insurance.

     
    Old 08-12-2008, 07:02 AM   #52
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    Re: Copaxone & Hives or Bad Reactions

    Hi Shelly, As far as the Avonex goes, well, as I said earlier, I am leary to comment on it, both because it is so different for everyone, and because I am not sure that I am qualified to really comment on it. My neuro started me off on 1/4 dose once a week.
    The next morning after my first dose found me awakening with 102.4 temp, I continued the 1/4 dosing for the next three weeks, by that time, the flu like symptoms were alot better, i was only getting temps of 100.4 which were much better than how I started.
    Well, then the next two weeks were 1/2 doses, what i was finding was that my flu like symptoms did not appear on the following day, but would appear the second day after the shot. This started causing problems with scheduling what I needed to get done.
    I was also finding that my fatigue levels were starting to get really troublesome, so my neuro put me on Amantadine to combat the fatigue. I had to play with the dosing, because the Amantadine would keep me awake at night. I finally got on the full dose of the Avonex six weeks after the first shot, although the temp went up a bit, (to 101+, it never hit the 102 range). I started feeling like I was in a mental fog. My brain would work, but it was as if my body did not want to speak the words I wanted to say. All of this began to get me in a very depressed state of mind, both loosing chuncks of time out of my week each week, then feeling so frustrated over the mental fog. I was put on Lexapro to calm the anxiety and fight the depression. It did help, but I felt frustrated about going from no meds to suddenly having to be on three of them. even though my kids are grown, I still had three of them home from college for the summer, and hated being invited to go to the movies or whatever and declining the invitations because i was just so tired, or "out of it." I also have three dogs - two labs and an abused stray mutt that really got jipped out of alot of walks because of the way I was feeling. I ended up discontinuing the avonex, despite the fact that my eyesight was still blurry, because it just was too instusive on my lifestyle. I am now almost two months off of everything except the lexapro and feeling trendously better. My eyesight has cleared up - it only gets blurry if i get overtired, I no longer need almost daily naps, my energy level is back to normal, I am getting to enjoy the kids and my dogs are getting their daily walks again. Is this the proper way to handle this? I am not sure, but for me, being able to live the life I have, being able to stay productive, and being able to enjoy my family are way too important to let the side effects of medicines interfere - Especially when I am not totally convinced the medicines are of any true benefit to MY disease which I have handled med free for the majority of the years I have had it.
    I am and have for the most part been one of the lucky ones. My MS is not something that is apparent to others unless I tell them I have it. Sure, this has not been true all of the time, I have lost the use of my legs for months, the use of my arm for months, my eyesight, etc. but in my case most of these major flare ups happened early on, back in the days when they did not have any of the medications they have now - they treated me with prednizone back then, and eventually solumedrol. I have come to know my limits. Pacing myself has been key -I don't know what else to say Shelly, I certainly do not want to tell you to do the same as I am doing and I have done, but as I said before, you should at the very least try the Avonex, give it a fair shake, then decide from there. This disease is so different for each one of us. Good luck Shelly. I am here if you need me. Pepper

     
    Old 08-12-2008, 08:44 AM   #53
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    Re: Copaxone & Hives or Bad Reactions

    Hi Tori, I took rebif a few years back and had nasty side effects. I may elect to give it another try if the avonex does not pan out.

     
    Old 08-12-2008, 08:51 AM   #54
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    Re: Copaxone & Hives or Bad Reactions

    Hi Pepper, Thank-You so much for your well written response. I relate so much to your feelings of being med free and your reasoning for choosing that path. It was as if you where me writing your response. I will give the avonex a try...I have nothing to lose in doing so. I hope you are well and continue to post!

     
    Old 08-12-2008, 08:58 AM   #55
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    Re: Copaxone & Hives or Bad Reactions

    Hi April, Yes...you are always 100 percent honest! So, GLAD you are feeling better!!! That is wonderful! I should have the avonex next week...still going through the set-up process with the insurance and such. I will let ya know how it goes.

     
    Old 08-12-2008, 04:23 PM   #56
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    Re: Copaxone & Hives or Bad Reactions

    All we can do is what's best for our MS, including which drugs to take or not to take them at all. Thankfully, we all have the right to change our minds! The Avonex is working well for me now, but if it doesn't, I'll try something else. If I get sick of the meds (very possible) or they are hurting me, I'll stop. I'm wishing you well, SHelly, with the Avonex. Those first few weeks were really rough for me.

    Pepper, thanks for your story! It was encouraging, and I agree that pacing yourself is the best thing to do. It's not as easy to do as it sounds. Even though I've learned a million times that I pay big time when I overdo it, and that if I get a lot of rest I will feel better, I still tend to overdo it. I'm definitely getting better with this, but it's still a problem. For me, this has been one of the hardest lessons about MS to learn. I'm still a work in progress.
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    Old 08-13-2008, 05:22 AM   #57
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    Re: Copaxone & Hives or Bad Reactions

    Hi Pepper, Thank-You so much for your well written response. I relate so much to your feelings of being med free and your reasoning for choosing that path. It was as if you where me writing your response. I will give the avonex a try...I have nothing to lose in doing so. I hope you are well and continue to post!

    April, Thanks for your comment. Even though I seem to be past my last episode, I am still checking in. This site was wonderful when I was hurting, and the responses and support I received were so encouraging and helpful ! I really feel as if I found a new group of friends here. I will continue to check in, because I genuinely have come to care about alot of you. Hope you all have a great day!! Pepper

     
    Old 08-13-2008, 01:52 PM   #58
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    Re: Copaxone & Hives or Bad Reactions

    Hi April, I know you will be their if I need you. In the short time I have been posting you and all have been wonderful and I thank-you. I should be all set with the avonex by next week. I' am waitin on the nurse to give me a call to schedule training. I will let you know how it goes for sure. How is your itching coming along?

     
    Old 08-13-2008, 03:12 PM   #59
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    Re: Copaxone & Hives or Bad Reactions

    Quote:
    Originally Posted by april1848 View Post
    My roots are coming in, my color looks brassy, and there are some grays poking through. To be honest, the appearance of my legs is making me feel very ugly, even though I can hide them, and it's dragging me down and depressing me.
    Gray hair? You poor dear! I already decided that once I begin getting gray hair, I'm going electric blue!

    My legs make me feel DISGUSTING! lol! It seems there are so many veins showing through them. I'm like, "Those could not have been there a year ago!!!". Of course, I wasn't inspecting my legs a year ago either for injection sites, so I'm sure the veins were there all along.

    I laugh sometimes when I think about all the flaws we begin noticing with our bodies. I began picking over mine with a fine tooth comb once diagnosed. "Ew, what's this brown spot???" (age spot of course). "Oh wow, am I going bald??" (no, not at all. I'm losing no more hair now than 5 years ago). Etc.

    Glad you're doing some nice things for yourself April. You're priority and deserve it!
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    Old 08-13-2008, 03:31 PM   #60
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    Re: Copaxone & Hives or Bad Reactions

    Let us know when you go blue! I did that once in high school, and I got suspended until I redyed it.

    I totally understand. MS doesn't make us ugly (after all, we all LOOK so good, right?) but my legs are covered with scratches and bruises! I've been bumping into things a lot, and I had a few falls the last two weeks. Fortunately, the falls didn't hurt anything except my pride, for the most part. I've never felt so unattractive in my life, and it's damaging my self confidence. Not exaggerating! I've been working so hard at work and for the election, and I'm working on my WWI book that will never be finished. My appearance has been pretty low on my priority list.

    I am not a vain person, no more than any other almost thirty year old anyway, but it's starting to bother me. I'm trying to gain weight which is hard. I've lost 5 pounds in the past two weeks, so I'm down to 95 pounds, which isn't good. And my hair looks attrocius! The only thing on me that looks somewhat good is my nails, which I do myself. I haven't been wearing much makeup either, because I sweat so much and because my tremors have been bad. It took me years to achieve the perfect liquid line and now I can't do it. I know this sounds completely shallow and corny, but the trip to the salon in two weeks will probably improve my mental health!

    Nenu, thank you for getting it! I'm so glad I'm not the only one!
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    Avonex started 11/07,
    Stopped 4/10 due to no insurance.

     
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