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Newly diagnosis with MS, choices of meds given, feedback needed
My battle started Aug 2011 and finally diagnosis with MS ON 1/11/13. I have a choice between copaxone or rebif injection. I read copaxone has more external side effects and rebif has more internal side effects. I would like to have feedback on this. Good and bad information would be great. Think I'm going with copaxone, but kind on fence a little. Thank you
I will let you know when I start medication. My Dr appt is Monday afternoon. I called Shared Solutions and got enrolled today.
Glad you were able to make a choice - sometimes that's the 1st large hurdle to get over.
Once you've started, remind us to bump up a dmd user list discussion.
It's a post we use to see who is on what med so we have go-to users for specific experiences w/the medicine :)
Once you've started, remind us to bump up a dmd user list discussion.
It's a post we use to see who is on what med so we have go-to users for specific experiences w/the medicine :)
Thank you for all this information, I really appreciate it. This tells me that reactions to the med can go away if I do have any. Andf what you do to help take the stinging away after shot. Hope I don't get a panic attack. Also, I went to school for PCT (Patient Care Technician) so, that will help me as we practice all types of injections on each other. I give myself B12 injections as well. I look forward to talking with you when I start my injections.
Thank you all for your feedback. I called doctor today and chose Copaxone. When my doctor was getting me the information on both drugs, she mentioned that Copaxone did not have the flu like symptoms and liver side effects. I work and feel the daily injection is best for me. I also inject B12, as that is low. I was admitted back in Nov 2012 and the admitting doctor said it was MS. Went in to er with abnormal EKG, blood pressure was high, with severe pain in neck, right side facial numbness and on right side of head with limb paralysis on left arm and pain. My first neurologist (Aug 2011 - Dec 2012) said all my symptoms was migraines and b12 related. Went back to my primary and she is the one who sent me to a MS neurologist. She reviewed my records and MRIs (4) and she said the reports was telling them what it was. I have 5 lesions. So, I go next Monday for my treatment plan and results from the 14+ blood tests she had ordered. More to come, and I will keep you all updated. Thank again as it is much appreciated!
Having read up on this stuff since late 2008, I figured some time ago that Copaxone should be.my first choice, if I ever get a.diagnosis.
Still, it's obviously a.very important and personal choice, so go on facts, not on the polls. Especially don't give a lot of weight to polls of us Limbolanders.
God bless.
Still, it's obviously a.very important and personal choice, so go on facts, not on the polls. Especially don't give a lot of weight to polls of us Limbolanders.
God bless.
I did Copaxone and had no real issues. It stung when I gave the injection but I learned to distract myself and it was fine. Other than that no problems.
Alex
Alex
If you’re leaning toward Copaxone, stick with it (although of course my curious mind wonders why you are leaning that direction vs. Rebif, or why you are supposedly limited to just those two choices) and don’t stress out about your decision. It is one of many outstanding tools at our disposal to attack this disease, and you’re doing well just to commit to using one of those tools. Its efficacy and safety profile is as good as the other DMDs that have been with us for the longer term, including Rebif. The side effects are usually minimal. There are people here and elsewhere that can help you learn the best ways to mitigate the side effects. If it proves intolerable or ineffective for you, you can always switch.
Ask questions anytime!
Ask questions anytime!
I too am a Copaxone girl. 7 months as of today. I chose Copaxone because bad depression runs in my family and liver issues so I wanted to avoid the other shots. ok a shot everyday though not fun is really not a big deal as far as pain goes. (it is shallow and fast) There are some side affects that people have had trouble with but to date here is all that I have had:
1) I had a weird rash all over my torso...did not itch or hurt was just there....went away after 3 weeks (odd but no biggie unless you are a huge swimmer or something :-))
2) Sight reactions...itchy/red at the sight, especially if you go too shallow, was nasty at first but growing up in Wisconsin with mosquitoes the size of airplanes teaches you to ignorw the itch :-) (at about 4 months that reaction was almost totally gone)
3) sting after injection....at first I had to use an icepack on the injection sites to take my mind off the sting but now I am used to it and it only lasts for a min or so and is not so bad
4) I have not ever had the "panic attack" reaction but I have read about it a lot and know it might happen. I have educated my family so they are aware it may happen....I try hard not to think about it and just thank the Lord every day that I am in as good of shape as I am and count the blessings I have. I hope you can keep yourself in good health and remember to stay strong and if you need all of us at this forum (and others) are here to listen because we ALL know it can be a rocky ride.
(side note - My 2nd cousin who has MS as well is on Rebif and likes it but I can not speak for her)
1) I had a weird rash all over my torso...did not itch or hurt was just there....went away after 3 weeks (odd but no biggie unless you are a huge swimmer or something :-))
2) Sight reactions...itchy/red at the sight, especially if you go too shallow, was nasty at first but growing up in Wisconsin with mosquitoes the size of airplanes teaches you to ignorw the itch :-) (at about 4 months that reaction was almost totally gone)
3) sting after injection....at first I had to use an icepack on the injection sites to take my mind off the sting but now I am used to it and it only lasts for a min or so and is not so bad
4) I have not ever had the "panic attack" reaction but I have read about it a lot and know it might happen. I have educated my family so they are aware it may happen....I try hard not to think about it and just thank the Lord every day that I am in as good of shape as I am and count the blessings I have. I hope you can keep yourself in good health and remember to stay strong and if you need all of us at this forum (and others) are here to listen because we ALL know it can be a rocky ride.
(side note - My 2nd cousin who has MS as well is on Rebif and likes it but I can not speak for her)
I'm the opposite - I have no experience with Rebif, but I have been on Copaxone since Sept 2010. I have no symptoms from it, other than stinging/welt at the site of the injection. It doesn't last too long after the injection. My neuro didn't give me a choice - he just said that he was going to start me on Copaxone.
I can't speak for Copaxone, but I do have a little experience with Rebif.
*Few skin reactions.
*As I titrated up my dose, the "flu-like" side effect became less noticeable.
* only 3 shots/week vs. every day for Copaxone.
Hope this helps,
Lisa
*Few skin reactions.
*As I titrated up my dose, the "flu-like" side effect became less noticeable.
* only 3 shots/week vs. every day for Copaxone.
Hope this helps,
Lisa
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All medicine has side effects, but not all people will experience them.
While you are looking into the individual meds and choices, you naturally are going to want the best to stop this beast. Did your doctor have a recommendation either way? Asking because some docs do depending on what they feel of your individual MS.
I'm on rebif, It's a small thin needle, and the med and schedule is very bearable. Minor initial side affects. After all these years, I know there are some things I didn't consider that I should have...And, that is mostly injection schedule.
Please look at the schedules, i.e., once weekly, daily, or 3-4 x's weekly. Weigh out the type of person you are and what schedule will fit easily into your daily routine.
Then, accept the fact that disease modifiers, like all meds have side affects. Weigh out the benefit vs risk. Benefit ultimately is stopping the beast.
Also know, not all MSers respond the same to each med. The old saying
applies here, what works for one, may not work for another. Thankfully, we have options :) to choose, and change to if need be.
Welcome to the forum, and I hope you are looking forward to treating your MS. I wish you well with your choices and thoughts. Ask anything, we are here to help.
-Shell