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My hubby has me give him his Avonex each week, he doesn't like sticking himself! He does have the flu-like symptoms afterwards; but also has muscle tightness and stiffness (dystonia) for maybe half a day afterwards. We've figured out that if he gets his shot just before bedtime and takes an extra muscle relaxant and some advil about 1/2 hour before that, it really helps control the symptoms.
I'm a nurse and I watch my hubby for any new symptoms and we try to work together to keep them under control. He's been in an MS support group (which he refers to as his b**ch group -they get together and complain about their symptoms!) for about 8 years now; and he has done better than any of the other members of the group because (he says) there are 2 of us watching for problems. The other married couples don't seem to be as aware of symptom changes (or they don't seem to work together on other things either).
Enlist your wife to help you watch for symptoms, Noahma, so you can stay at your highest level of functioning possible. I want my hubby around for a long time in the future, so it behooves me to keep an eye out for what's going on with him.
The cold may make you stiff; watch out for the heat because it does make symptoms much more noticeable.
My hubby has me give him his Avonex each week, he doesn't like sticking himself! He does have the flu-like symptoms afterwards; but also has muscle tightness and stiffness (dystonia) for maybe half a day afterwards. We've figured out that if he gets his shot just before bedtime and takes an extra muscle relaxant and some advil about 1/2 hour before that, it really helps control the symptoms.
I'm a nurse and I watch my hubby for any new symptoms and we try to work together to keep them under control. He's been in an MS support group (which he refers to as his b**ch group -they get together and complain about their symptoms!) for about 8 years now; and he has done better than any of the other members of the group because (he says) there are 2 of us watching for problems. The other married couples don't seem to be as aware of symptom changes (or they don't seem to work together on other things either).
Enlist your wife to help you watch for symptoms, Noahma, so you can stay at your highest level of functioning possible. I want my hubby around for a long time in the future, so it behooves me to keep an eye out for what's going on with him.
The cold may make you stiff; watch out for the heat because it does make symptoms much more noticeable.
From what my MS nurse told me, I may develop the heat sensitivity at some point, or I may not. Right now I am relishing in the fact that the heat does not bother me. my wife is Incredibly supporting as well as my 2 year hold which brings me stuffed animals after I give myself my shot. I decided on the Copaxone after looking at my family history of depression, and Copaxone seemed to be the right fit to avoid that. I decided long ago that the support groups were not for me. I am naturally a very optimistic person and I did not want to hear the complaints, rather would like to hear the good things like how well something went in the day. I am a member of MSworld.org though, where others with MS can chat and ask questions.
quite a coincidence, last night I woke up at 4am and realized that I had relapsed, this time on the right side of my body, arm and leg and inside my mouth effected. Darn this sucks. At least the problems let up about 90% by the time I had to get up in the morning. hoping to battle the rest of this off here soon, I have an appt. with my Neuro Thursday to check things out and see if they need to do the IV steroids. my guess is not.
My hubby has me give him his Avonex each week, he doesn't like sticking himself! He does have the flu-like symptoms afterwards; but also has muscle tightness and stiffness (dystonia) for maybe half a day afterwards. We've figured out that if he gets his shot just before bedtime and takes an extra muscle relaxant and some advil about 1/2 hour before that, it really helps control the symptoms.
Thank you fort writing about dystonia! I didn't know the name and I am experiencing this BIG TIME! I find myself stretching in my sleep (waking up stretching) and am really sore (cannot say my sleep is great during the med period though once the tylenol wears off). For me, the side effects of Avonex are lasting well over 24 hours. Because of my work schedule (do not have two days off in a row), I have to take the shot early enough in the day that by the next time I go to work the effects have lessoned. I am still trying to figure this out. To be honest, I am really hating the fact I don't get a feel good day off. I see my neuro 10/2 so I am going to ask about a muscle relaxer since that might help that problem. I also have been really depressed (geez, get MS for my 40th bday, been sick on my days off, no wonder!) so I need to talk to my doc about antidepressants or switching the meds at some point. Although I really don't want to change meds since I am new to this. I also need to talk to him about fatigue. I have been needing over 10 hours of sleep at night and NEED a nap but can't since I am working.
Anyway, your information about dystonia has been really helpful and has given me one more thing to address with the doc.
Thank you fort writing about dystonia! I didn't know the name and I am experiencing this BIG TIME! I find myself stretching in my sleep (waking up stretching) and am really sore (cannot say my sleep is great during the med period though once the tylenol wears off). For me, the side effects of Avonex are lasting well over 24 hours. Because of my work schedule (do not have two days off in a row), I have to take the shot early enough in the day that by the next time I go to work the effects have lessoned. I am still trying to figure this out. To be honest, I am really hating the fact I don't get a feel good day off. I see my neuro 10/2 so I am going to ask about a muscle relaxer since that might help that problem. I also have been really depressed (geez, get MS for my 40th bday, been sick on my days off, no wonder!) so I need to talk to my doc about antidepressants or switching the meds at some point. Although I really don't want to change meds since I am new to this. I also need to talk to him about fatigue. I have been needing over 10 hours of sleep at night and NEED a nap but can't since I am working.
Anyway, your information about dystonia has been really helpful and has given me one more thing to address with the doc.
The depression is one of the side effects of the avonex, it is one big reason why I went with Copaxone. I do not have the fatigue, and have heard quite a few of the ADD drugs are used since they are stimulants.
IMO-Don't know the other drugs they doleout for depression/anxiety, but I gained about 20-30 lbs on Zoloft (in spite of THEM saying you don't gain) That made me even more depressed, so I weaned myself off over a yr ago. AND I still can't get rid of the damn extra weight..........
So that stiffness is dystonia...hmm it has a name...well I guess I have that.
Jillz you might ask about Amantadine, I think it was , for the fatigue...I tried it back when first diagnosed and they were given me something for everything and it sorta helped, but I seemed to feel a more spacey on it, and just threw it out.
good luck....does your doc have a good physicians assistant or nurse? My fav doc in Jax FL had gal that you could call and would actually see patients for the regular checkups.........
IMO-Don't know the other drugs they doleout for depression/anxiety, but I gained about 20-30 lbs on Zoloft (in spite of THEM saying you don't gain) That made me even more depressed, so I weaned myself off over a yr ago. AND I still can't get rid of the damn extra weight..........
So that stiffness is dystonia...hmm it has a name...well I guess I have that.
Jillz you might ask about Amantadine, I think it was , for the fatigue...I tried it back when first diagnosed and they were given me something for everything and it sorta helped, but I seemed to feel a more spacey on it, and just threw it out.
good luck....does your doc have a good physicians assistant or nurse? My fav doc in Jax FL had gal that you could call and would actually see patients for the regular checkups.........
Thanks Crazyma! I am writing that drug name down. I do have a fantastic nurse through my neuro that I will be calling (and do call for all kinds of stuff). She doesn't actually see patients but can take concerns to the neuro and get back to you much more quickly than the doc can.
Ask about provigil or LDL (naltrexone), check ins coverage for it too, i don't think anyone has touched on the cost issues of drugs there are some out there that you can get assistance with the cost but you'll have to dig a bit to find them.
Ask about provigil or LDL (naltrexone), check ins coverage for it too, i don't think anyone has touched on the cost issues of drugs there are some out there that you can get assistance with the cost but you'll have to dig a bit to find them.
Good advice. I was told by my neuro nurse that it is difficult to get approval from the insurance companies for many of these drugs. Why, I have no idea. If you need something, you need it. UGH!
jillz, maybe the copaxone would be a better drug for you because of the depression issues. If you don't mind giving yourself the daily injections, it might be worth discussing with your doctor.
Amantadine has been very helpful fighting fatigue for my husband; it is also an anti-viral drug and that was part of why Hubby was put on it (to combat frequent viral infections he was having at the time). He has a lot more energy and when he was first put on it, he could make it through his workday without taking naps.
Dystonia looks really painful to me, and Hubby says that it can be very "uncomfortable." (I swear this man has an extremely high pain threshold; he never ever says he has "PAIN!"). We've found that the pre-medicating before injection helps, but Hubby just reminded me that I didn't mention the gentle stretches he does each morning and night that help relax his muscles too.
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