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HELP>>>> I Skipped a Copaxone shot for a night....
Here is the question....however, please read the back up information that goes along with it.
Has anyone missed or skipped their Copaxone shot.? And if so did you notice any return of your MS related symptoms or disabilities?
I've been taking Copaxone 20 mg, one shot per day, every day since June and I haven't missed a dose. I do have horrible welts, the injections are sometimes rather painful as I have heightened nerve sensations in some areas, while decreased in others. I didn't want to take the injections in the first place....but since I am a worst case scenario MS person I thought I would give it a shot for 6 months without bitching or complaining and take it from there. Well, I did it and it regretfully worked. I am an active person that used to scuba dive, travel, go to the beach, fishing, rollerblading, kayaking, etc. Having to plan my day around injections was not my goal in life. First getting sick and being partially blinded, unable to walk, mild to extreme loss of coordination and motor skills, etc. I was devastated but I'm a fighter.
To bring this back to my point. I have been overworked lately (who isn't in this economy). I haven't had a relapse in a long while. My MRI has even shown a decrease in one of my lesions and inactivity in the remaining. For the most part I have been feeling pretty good. However, my arms and legs are covered in horrible bruises and welts. I have been doing the injections correctly (called Shared Solutions, talked to my doc and some other medical people). Copaxone is the best drug for me since its Subcutaneous and not Intramuscular. Plus Copaxone works with my type of MS they consider me a combination of Relapsing and Progressive, they have a name for this combinations but I forget. I was tired of taking the shots and with everything that was going on in life and since I have NEVER missed a dose I figured I deserved a one night break. I haven't felt numbness and extreme muscle spacicity in a LONG time. I now remember why I opted of putting up with this torture. Yesterday, which would be the day after I decided to skip my shot, my hands and feet, and legs had started with the irritating and painful numbness and my thigh muscles started going through spacicty. My vision has been blurred, and I feel that oh soo common feeling of being sick. Plus my motor skills and coordination have only minorly not been up to par. Which is why last night I took my shot. I scared the heck out of me.
So my question (sorry for the rambling)....has anyone noticed mild return of their MS symptoms after missing a dose of their Copaxone? I haven't called the doctor yet. I have had mild return of symptoms on and off....but nothing as severe or exteme as I felt yesterday and partially today. My legs still have that traveling, tingling, numbmess, my feet are partially numb and my vision is still not completely normal. I'm not as bad as I have ever been, nor does it seem like when I was at my worst during a relapse. But it scares me that missing one dose could possibly knock me back down to the completely disable category. I researched a lot about Copaxone and my Relapsing/Progressive. Some cases stated that those that stopped the Copaxone and did not return to it had become worse than when they first started. I was on my way to becoming wheelchair bound. One of the girls in Cali that was like me stopped, and became wheel chair bound, not dependent. She started the Copaxone, but has not been taken off the need for the wheelchair. THAT SCARES ME. Her doctor told her that when she stopped her Copaxone the lesions had pretty much returned to the state they were in before starting the shots. Then they progressed further as if no time had occured while she was taking Copaxone. So she was worse than she had ever bee. When she started the shots again there was only mild relief from her symptoms but she did not regain the motor abilities. THAT SCARES ME EVEN MORE!
Has anyone noticed the immediate return of symptoms after missing a dose? Has anyone heard of anything like the girl I was talking to in Cali? I know I was an idiot for skipping a dose. But I'm not as strong as I thought I was and it does get overwhelming sometimes. When you are a single girl in your early 30s, who lives alone, and wants a better quality of life. Maybe this is the best quality I can hope for and I should just suck it up.
Please give me your thoughts and comments!
Has anyone missed or skipped their Copaxone shot.? And if so did you notice any return of your MS related symptoms or disabilities?
I've been taking Copaxone 20 mg, one shot per day, every day since June and I haven't missed a dose. I do have horrible welts, the injections are sometimes rather painful as I have heightened nerve sensations in some areas, while decreased in others. I didn't want to take the injections in the first place....but since I am a worst case scenario MS person I thought I would give it a shot for 6 months without bitching or complaining and take it from there. Well, I did it and it regretfully worked. I am an active person that used to scuba dive, travel, go to the beach, fishing, rollerblading, kayaking, etc. Having to plan my day around injections was not my goal in life. First getting sick and being partially blinded, unable to walk, mild to extreme loss of coordination and motor skills, etc. I was devastated but I'm a fighter.
To bring this back to my point. I have been overworked lately (who isn't in this economy). I haven't had a relapse in a long while. My MRI has even shown a decrease in one of my lesions and inactivity in the remaining. For the most part I have been feeling pretty good. However, my arms and legs are covered in horrible bruises and welts. I have been doing the injections correctly (called Shared Solutions, talked to my doc and some other medical people). Copaxone is the best drug for me since its Subcutaneous and not Intramuscular. Plus Copaxone works with my type of MS they consider me a combination of Relapsing and Progressive, they have a name for this combinations but I forget. I was tired of taking the shots and with everything that was going on in life and since I have NEVER missed a dose I figured I deserved a one night break. I haven't felt numbness and extreme muscle spacicity in a LONG time. I now remember why I opted of putting up with this torture. Yesterday, which would be the day after I decided to skip my shot, my hands and feet, and legs had started with the irritating and painful numbness and my thigh muscles started going through spacicty. My vision has been blurred, and I feel that oh soo common feeling of being sick. Plus my motor skills and coordination have only minorly not been up to par. Which is why last night I took my shot. I scared the heck out of me.
So my question (sorry for the rambling)....has anyone noticed mild return of their MS symptoms after missing a dose of their Copaxone? I haven't called the doctor yet. I have had mild return of symptoms on and off....but nothing as severe or exteme as I felt yesterday and partially today. My legs still have that traveling, tingling, numbmess, my feet are partially numb and my vision is still not completely normal. I'm not as bad as I have ever been, nor does it seem like when I was at my worst during a relapse. But it scares me that missing one dose could possibly knock me back down to the completely disable category. I researched a lot about Copaxone and my Relapsing/Progressive. Some cases stated that those that stopped the Copaxone and did not return to it had become worse than when they first started. I was on my way to becoming wheelchair bound. One of the girls in Cali that was like me stopped, and became wheel chair bound, not dependent. She started the Copaxone, but has not been taken off the need for the wheelchair. THAT SCARES ME. Her doctor told her that when she stopped her Copaxone the lesions had pretty much returned to the state they were in before starting the shots. Then they progressed further as if no time had occured while she was taking Copaxone. So she was worse than she had ever bee. When she started the shots again there was only mild relief from her symptoms but she did not regain the motor abilities. THAT SCARES ME EVEN MORE!
Has anyone noticed the immediate return of symptoms after missing a dose? Has anyone heard of anything like the girl I was talking to in Cali? I know I was an idiot for skipping a dose. But I'm not as strong as I thought I was and it does get overwhelming sometimes. When you are a single girl in your early 30s, who lives alone, and wants a better quality of life. Maybe this is the best quality I can hope for and I should just suck it up.
Please give me your thoughts and comments!
Hi PR - Welcome to the group.
This thread is a little on the old side. It was last updated over a year ago. You may get better response if you Post a Question and introduce yourself.
Kyle
This thread is a little on the old side. It was last updated over a year ago. You may get better response if you Post a Question and introduce yourself.
Kyle
I have been on Copaxon over 7 yrs. There was a point that I was missing more shots then I was getting. This was due to being a care taker for my parents who were dying. Once I lost them I went back for about 1 yr but had a real big flare up recently. Did the IV & oral steroids. I am now going for PT I am still having problems but baby steps getting there. The person who gives me my shots is going away for a week I have no one who can help & my vision is to poor to do on my own. I called shared solitions after being on the new 3 day they said it wouldn't be a big deal missing a week. Still not sure due to the recent flare up. Can anyone tell me there input on missing a week. Left msg for my Dr
I was on Copax for over 5 yrs and I have been off of it for over 5 months now because I moved to another state and my doctor wouldn't give me any meds to hold me over till I got another doctor there even if I drove 3 hrs to see him I can tell the difference from when I was on it to where I'm not my MS has progressed and has gotten worse than it ever has the doctors here are taking there time to get me on meds and I'm almost back to where I was in a wheel chair so I don't know if it is because I have missed so many does and not been on any thing for my MS or it's just plain getting worse good luck and God bless
I called Shared Solutions and they said do not worry about missing a shot. She said that some people take a "vacation" from their shots (although they don't recommend it) In the 14 months I have been on it, I think I have missed a week total in that time and have noticed no increase in symptoms.
I feel guilty if I miss it, so that keeps me taking it. Every once in a while, I will remember after I have gone to bed and not taken a shot. I take it first thing in the morning. I take 10 shots out of the refrigerator and put them on my desk at room temperature. I mark the calendar everytime I do that and can notice from the calendar if I have missed any shots. It's safe to keep Copaxone out of the frig at room temperature for 30 days, as long as they are used up in 30 days and kept out of direct sun-light. Anything that has been out of the frig for over 30 days is to be thrown away.
Try to self-inject when you can. The auto-injector is pretty traumatic to the skin when it "slams" to inject. The spring they have in the device is just too tightly wound and really does slam the skin and cause more "damage" to the skin. I also do not use the alcohol wipes anymore. No matter how much I dry the area, alcohol preps makes the injections sting.
Any lumps I get are usually gone in 3 to 4 days. I can live with that since there are so many alternative injections sites. Some areas are more sensitive than others. I figure, so what the heck, my skin reactions sometimes results in a bruise or a small lump. That's a small price to pay for hoping to keep myself out of a wheelchair or have to walk with a cane...so I journey on. As I say, not taking the injections is worse than the alternative...worsening of the MS. Try to keep your mind thinking that way, so maybe it will be easier to endure that shot everyday. It's a small price to pay to keep us stable. Right?
All the Best,
Heather
I feel guilty if I miss it, so that keeps me taking it. Every once in a while, I will remember after I have gone to bed and not taken a shot. I take it first thing in the morning. I take 10 shots out of the refrigerator and put them on my desk at room temperature. I mark the calendar everytime I do that and can notice from the calendar if I have missed any shots. It's safe to keep Copaxone out of the frig at room temperature for 30 days, as long as they are used up in 30 days and kept out of direct sun-light. Anything that has been out of the frig for over 30 days is to be thrown away.
Try to self-inject when you can. The auto-injector is pretty traumatic to the skin when it "slams" to inject. The spring they have in the device is just too tightly wound and really does slam the skin and cause more "damage" to the skin. I also do not use the alcohol wipes anymore. No matter how much I dry the area, alcohol preps makes the injections sting.
Any lumps I get are usually gone in 3 to 4 days. I can live with that since there are so many alternative injections sites. Some areas are more sensitive than others. I figure, so what the heck, my skin reactions sometimes results in a bruise or a small lump. That's a small price to pay for hoping to keep myself out of a wheelchair or have to walk with a cane...so I journey on. As I say, not taking the injections is worse than the alternative...worsening of the MS. Try to keep your mind thinking that way, so maybe it will be easier to endure that shot everyday. It's a small price to pay to keep us stable. Right?
All the Best,
Heather
I missed more than 3 shots when I was on Copaxon (3 years) and I can remember noticing signs of the MS. DX in 2000
I am now on Rebif.
I am now on Rebif.
I wasn't feeling good for a few days on and off prior to not taking my shot. I do overwork myself. In this economy I don't have a choice. I'm a high school teacher so I am constantly surrounded by germs. I can't tell if I'm getting a cold, been feeling flush and warm. Sinuses are kind of funky, on amantadine and allegra D12 to get rid of the cold and flu like symptoms. SO I could simply be coming down with something.......BUT.........the numbess is still present and is almost feeling like it did when I first was getting diagnosed. My muscles are all really tight. I'm not sleeping well. I'm not stressing any of these things. Which is why I know that I'm not psychologically adding to any symptoms. I reached acceptance a long time ago that whatever is going to happen is going to happen, and it is what it is.
My typing hasn't been that well either. The docs believe that I had been sick for a long period of time but didn't realize that it was anything serious. I used to type about 70 word/min....but now I'm much slower. And my typing isn't as proficient as it used to be. I'm missing keys and my fingers either "feel" like they have taped a key or head towards the wrong keys. My vision isn't that great. I fell like I'm sick (much like when I was first diagnosed).
But who knows I might just really be sick. Only time will tell. I'm going to try and call the neuro this week. You might laugh but it sometimes feels like taking care of my MS is like a 2nd full time job. I fight with the insurance company and billing offices, a chiro/massage visit 1-2 times per week, juggling the bill sometimes, taking my shots, filling all my scrips, planning my day around my shots, monitoring and tracking my symptoms. Do any of you feel this way. I feel like I need a personal secretary just for my health...LOL. Many people ask me how I do it all my self especially when I get sick.....and often times I wonder too. But I just plug along.
My typing hasn't been that well either. The docs believe that I had been sick for a long period of time but didn't realize that it was anything serious. I used to type about 70 word/min....but now I'm much slower. And my typing isn't as proficient as it used to be. I'm missing keys and my fingers either "feel" like they have taped a key or head towards the wrong keys. My vision isn't that great. I fell like I'm sick (much like when I was first diagnosed).
But who knows I might just really be sick. Only time will tell. I'm going to try and call the neuro this week. You might laugh but it sometimes feels like taking care of my MS is like a 2nd full time job. I fight with the insurance company and billing offices, a chiro/massage visit 1-2 times per week, juggling the bill sometimes, taking my shots, filling all my scrips, planning my day around my shots, monitoring and tracking my symptoms. Do any of you feel this way. I feel like I need a personal secretary just for my health...LOL. Many people ask me how I do it all my self especially when I get sick.....and often times I wonder too. But I just plug along.
I've been taking Copaxone for two years now, and sometimes I'm not so good about it. There was a month when I was taking it every other day. Then I had a relapse, so I went back to taking it every day. i don't think missing one shot will cause a return of symptoms, though.
I have a pseudo-exacerbation around my time of the month - maybe your return of symptoms is one of those? Let's hope so!
I have a pseudo-exacerbation around my time of the month - maybe your return of symptoms is one of those? Let's hope so!
Hi and welcome.
Although it's not good to 'change the ground rules' about Copaxone dosage, skipping one time will not affect your disease. Please don't beat yourself up over this. It's not a big deal. Possibly your symptoms seem worse because you're so aware of them, feeling guilty. To set your mind at rest, why not call Shared Solutions?
Your side effects do sound really bad. I was on Copaxone for 2 months but had to stop because I was developing hives, rashes, etc., and nothing I tried helped this. I had to face up to the fact that I'm allergic to Copaxone and switch meds. It was the best decision for me because I was going nuts with the itching. I'm doing much better with Avonex, being careful to premedicate and take other precautions.
Could you give us more info on the nature of your diagnosis? Were you told you have Progressive/Relapsing MS? That really is quite rare. And is that why you are on Copaxone? Have you been dianosed only since June? That's not long enough a time to say anything definitive about relapses, so how do they know? We have another member here who was given Copaxone for PPMS. I have always heard that it was used for RRMS only, but apparently not. If you are sure you have a progressive form, maybe you do have to put up with Copaxone, but why not narrow this down a bit. A conference with your neuro is in order. Perhaps you could just as well use one of the interferons.
Please keep posting as the forum gets to know you. It's a great place for support and accurate information, as well as new friendships and even a bit of fun.
ess
Although it's not good to 'change the ground rules' about Copaxone dosage, skipping one time will not affect your disease. Please don't beat yourself up over this. It's not a big deal. Possibly your symptoms seem worse because you're so aware of them, feeling guilty. To set your mind at rest, why not call Shared Solutions?
Your side effects do sound really bad. I was on Copaxone for 2 months but had to stop because I was developing hives, rashes, etc., and nothing I tried helped this. I had to face up to the fact that I'm allergic to Copaxone and switch meds. It was the best decision for me because I was going nuts with the itching. I'm doing much better with Avonex, being careful to premedicate and take other precautions.
Could you give us more info on the nature of your diagnosis? Were you told you have Progressive/Relapsing MS? That really is quite rare. And is that why you are on Copaxone? Have you been dianosed only since June? That's not long enough a time to say anything definitive about relapses, so how do they know? We have another member here who was given Copaxone for PPMS. I have always heard that it was used for RRMS only, but apparently not. If you are sure you have a progressive form, maybe you do have to put up with Copaxone, but why not narrow this down a bit. A conference with your neuro is in order. Perhaps you could just as well use one of the interferons.
Please keep posting as the forum gets to know you. It's a great place for support and accurate information, as well as new friendships and even a bit of fun.
ess
hi ocean. i have been on copax for about 1 1/2 years now. ive missed 2 in that time.
the 1st one was when i just started. i just got my 2nd month supply and it looked kinda cloudy. i called shared solutions and the nurse told me not to take it. (it turned out it was a bluish looking label on the new batch). the next day i did feel kinda funky but quickly got over it when i did the next shot. i think the reaction was somewhat psycological though.
i told my dr about it and he said not to worry about it. it takes up to 9 months for copax to build up in your body and work to it full potential anyway.
the 2nd time i missed one was after being on it for almost a year. i just plain forgot one friday night. went to bed and never realized till 11 AM. got online and looked up the info at shared solutions about what to do. it said if you miss one to just go back on schedule with next shot if you cant space them at least 12 hrs apart. i wasnt about to plan on staying up till 11 PM so i skipped it. i was kinda waiting for and expecting issues like the 1st time but the never came.
i told my dr about missing this one and the 12 hr info i got. he told me it actually would not have been a big deal if i had done one at 11 AM and one at 7 PM. he said there is currently clinical trials going on with double the dose of copax and he said it would have been fine to take it. oh well, that info came a few weeks to late.........
i would have to assume that if it takes about 9 months for copax to build to its potential that it works the same in reverse to. this was my thinking after missing that 2nd shot. that kept any psycological reactions at bay. i was quite upset with myself for forgetting it.
wishing you the best.
deb
ps.... i read your profile. we have alot in common including scuba diving.
the 1st one was when i just started. i just got my 2nd month supply and it looked kinda cloudy. i called shared solutions and the nurse told me not to take it. (it turned out it was a bluish looking label on the new batch). the next day i did feel kinda funky but quickly got over it when i did the next shot. i think the reaction was somewhat psycological though.
i told my dr about it and he said not to worry about it. it takes up to 9 months for copax to build up in your body and work to it full potential anyway.
the 2nd time i missed one was after being on it for almost a year. i just plain forgot one friday night. went to bed and never realized till 11 AM. got online and looked up the info at shared solutions about what to do. it said if you miss one to just go back on schedule with next shot if you cant space them at least 12 hrs apart. i wasnt about to plan on staying up till 11 PM so i skipped it. i was kinda waiting for and expecting issues like the 1st time but the never came.
i told my dr about missing this one and the 12 hr info i got. he told me it actually would not have been a big deal if i had done one at 11 AM and one at 7 PM. he said there is currently clinical trials going on with double the dose of copax and he said it would have been fine to take it. oh well, that info came a few weeks to late.........
i would have to assume that if it takes about 9 months for copax to build to its potential that it works the same in reverse to. this was my thinking after missing that 2nd shot. that kept any psycological reactions at bay. i was quite upset with myself for forgetting it.
wishing you the best.
deb
ps.... i read your profile. we have alot in common including scuba diving.
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