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it is called alemtuzumab, the side effects I have seen so far by doing research online is a clotting problem with the blood, and anemia as well as a few others.
Hmmm does sound like it's a different drug then, but from the same grouping perhaps? The use of "zumab" on the end of both the drug names tends to suggest they're in a similar grouping. I can never tell with these things because often time the Australian name the drug is marketed under is different to the name in other parts of the world. Although my medical terminology is a little rusty these days and my MIMS is a really old one so won't have either drugs listed. Clotting issues sounds very different to encephalopathy. Different action. I'll have to do some more poking around I think.
Quote:
Originally Posted by Noahma
I LOVE Copaxone, I have not tried any of the other DMD's, and am 8 months into my Copaxone shots. I wont find out until February when I have my MRI if it is working for me or not (God I hope so, I don't like the side effects of the other DMD's, I still work full time, and have my 2 year old daughter) and the idea of being down for a couple of days with flu like symptoms is not fond with me.
I have very little side effects with my copaxone, just some burning that has lessened over the past few months. And the initial stick from the needle, which by the way is much better now that they have rolled out a thinner needle.
Thinner needles make all the difference! But then I think the consistency of the Copaxone is different to the interferons anyway because those interferon shots can make quite a mess with site reactions and are like tetanus shots some of them, the fluid is so thick or something. And yes, this "flu like symptoms" business on the interferons is no fun either. I guess if you're the one taking the meds it doesn't really matter if it's "flu like symptoms" as opposed to plain old flu, you still feel like crap!
The copaxone does seem much better in terms of "energizing" too. Least from what I've noticed. I'm glad you're having a positive experience with it. Good news is that I heard on the grapevine from a medical research friend that they're currently working on a Copaxone (I think it is Copaxone) pill which you can just swallow, so no more needles! Now if they could just HURRY UP! I'm sure no longer being a human pin cushion will be great news for a lot of people.
Quote:
Originally Posted by Noahma
no probs, just wanting to make sure people that read this know that we do exist ;p Although we number 50% less than the ladys diagnosed with MS
Hmmm does sound like it's a different drug then, but from the same grouping perhaps? The use of "zumab" on the end of both the drug names tends to suggest they're in a similar grouping. I can never tell with these things because often time the Australian name the drug is marketed under is different to the name in other parts of the world. Although my medical terminology is a little rusty these days and my MIMS is a really old one so won't have either drugs listed. Clotting issues sounds very different to encephalopathy. Different action. I'll have to do some more poking around I think.
Thinner needles make all the difference! But then I think the consistency of the Copaxone is different to the interferons anyway because those interferon shots can make quite a mess with site reactions and are like tetanus shots some of them, the fluid is so thick or something. And yes, this "flu like symptoms" business on the interferons is no fun either. I guess if you're the one taking the meds it doesn't really matter if it's "flu like symptoms" as opposed to plain old flu, you still feel like crap!
The copaxone does seem much better in terms of "energizing" too. Least from what I've noticed. I'm glad you're having a positive experience with it. Good news is that I heard on the grapevine from a medical research friend that they're currently working on a Copaxone (I think it is Copaxone) pill which you can just swallow, so no more needles! Now if they could just HURRY UP! I'm sure no longer being a human pin cushion will be great news for a lot of people.
Yes, less in number but not in importance.
I have been following the Fingolimod (MS treatment in the pill form) pretty closely. They are saying close to a 77% efficacy, which is AMAZING, the current ones are 30%-35% And recently they have noticed that it does have some reversal of symptoms associated with it. The side effects seem doable, although one person has died during the phase 2 trials. The effects that have been noticed the worst being a drop in heart rate temporarily. they watch you for 6 hours after your first dose to see what reaction you have. From what I have read, it is 12-16 months away from FDA approval!!! I will probably give it a year on the market before attempting to switch over to it.
I have been following the Fingolimod (MS treatment in the pill form) pretty closely. They are saying close to a 77% efficacy, which is AMAZING, the current ones are 30%-35% And recently they have noticed that it does have some reversal of symptoms associated with it. The side effects seem doable, although one person has died during the phase 2 trials. The effects that have been noticed the worst being a drop in heart rate temporarily. they watch you for 6 hours after your first dose to see what reaction you have. From what I have read, it is 12-16 months away from FDA approval!!! I will probably give it a year on the market before attempting to switch over to it.
There is supposed to be some kind of heart beat side effect with the Copaxone in some patients too though yes? I seem to remember. In the initial stages? Palpitations or something of that nature?
Something like that (with a 77% efficacy) sounds great although I agree with you, let others go first and see how it goes before changing over.
It's so hard for people to know what their individual reaction to a medication is going to be. What works well for some, not so much for others. But a pill is always going to be more appealing and much more convenient than injectables. Do you know if the pill has the storage temperature requirements like the injectables do? That would be an added bonus, especially when travelling. Getting on long haul flights with ice packs and hyperdermics is such a pain these days.
There is supposed to be some kind of heart beat side effect with the Copaxone in some patients too though yes? I seem to remember. In the initial stages? Palpitations or something of that nature?
Something like that (with a 77% efficacy) sounds great although I agree with you, let others go first and see how it goes before changing over.
It's so hard for people to know what their individual reaction to a medication is going to be. What works well for some, not so much for others. But a pill is always going to be more appealing and much more convenient than injectables. Do you know if the pill has the storage temperature requirements like the injectables do? That would be an added bonus, especially when travelling. Getting on long haul flights with ice packs and hyperdermics is such a pain these days.
I don't know what the storage is on it, the reaction with Copaxone that you are talking about is called IRPR, it is extremely rare, it mimics a panic attack, or heart attack lasts for 15 min. and in some cases can be very severe. none that I know of have died from it though. I want to make sure any treatment has had ALL of the kinks worked out before I give it a go. I have a 2 year old daughter and a beautiful wife I put first when choosing meds
hey all , I have been trying to remember what chemo mama was getting.( she passed in 97, and had an odd combo of chronic lymphatic leulemia and hairy cell) I know that I learned to give her somekind of interferon shot, which as I recall was to help with anemia, orthe immune system?? I can't remember. Had to do with the chemo side effects.
Anyway...I am still the rebel and doing no treatment, but am pursuing cleaning out my system of gunk and will be pinpointing foods that cause problems here some. I have been doing a lot of reading on nutrition, chemicals, autoimmune disease, etc. here lately. I just continue to feel like the answer is staring US in the face. Ahh. I know so many people with similiar *complaints* that have never been diagnosed with MS or anything....what is the one connecting dot???????
I don't know what the storage is on it, the reaction with Copaxone that you are talking about is called IRPR, it is extremely rare, it mimics a panic attack, or heart attack lasts for 15 min. and in some cases can be very severe. none that I know of have died from it though.
Yes! That's it! Mind like a sieve sometimes!
Doesn't sound like a lot of fun at all. Still 15 minutes of possible "panic attack" vs 6 hours of low blood pressure and monitoring sounds like a better deal to me. Although I guess it depends on which one a person likes least? Guess you'd have to weigh up if you're a "lucky" person or not.
Quote:
Originally Posted by Noahma
I want to make sure any treatment has had ALL of the kinks worked out before I give it a go. I have a 2 year old daughter and a beautiful wife I put first when choosing meds
Perfectly excellent reasons to wait and see how it goes for others first I reckon.
The decision to try new meds and treatments is such a personal one. I guess I'd be like you, always wanting to see how a new product goes before trying but then I suppose it's easy enough to say that from where I'm at right now. Could be very different if I'd been really struggling with symptoms and current meds. It's such an individual thing.
Would it help to have a few pointers on injections so you aren't having so many injection site reactions and problems?
I give my hubby his injections for his Avonex because he would have local reactions when he gave his own shots; and he rarely has a problem now. He takes extra strength tylenol about a half hour before I "shoot" him, and I rotate his injections sites from one limb to another with each shot. Make sure the muscle is relaxed (I kind of hold the muscle and gently wiggle it with my non-dominant hand to make sure it is relaxed); hold the syringe like a dart in your dominant hand and then put the needle in fast at a 90 degree angle. Using the non-dominant hand, gently pull back slightly on the plunger (to make sure you aren't in a blood vessel), and slowly inject the medicine (over 4-10 seconds, depending on thickness), and then remove the needle quickly once the medicine is injected (this is how I was taught many, many years ago in nursing school; I understand they don't teach this method anymore).
Anyway, give it a try and see if that helps reduce the localized reactions.
Would it help to have a few pointers on injections so you aren't having so many injection site reactions and problems?
I give my hubby his injections for his Avonex because he would have local reactions when he gave his own shots; and he rarely has a problem now. He takes extra strength tylenol about a half hour before I "shoot" him, and I rotate his injections sites from one limb to another with each shot. Make sure the muscle is relaxed (I kind of hold the muscle and gently wiggle it with my non-dominant hand to make sure it is relaxed); hold the syringe like a dart in your dominant hand and then put the needle in fast at a 90 degree angle. Using the non-dominant hand, gently pull back slightly on the plunger (to make sure you aren't in a blood vessel), and slowly inject the medicine (over 4-10 seconds, depending on thickness), and then remove the needle quickly once the medicine is injected (this is how I was taught many, many years ago in nursing school; I understand they don't teach this method anymore).
Anyway, give it a try and see if that helps reduce the localized reactions.
The site reactions for copaxone are due to the acidity of the medication. There are ways to reduce it. Using heat and cold packs, pressing hard on the injection area for 30 seconds after injecting to push the med into the fat tissues a little more, and using benydryl cream to help with the itch. After 6 months the reactions are about 1/4 of what they were originally (pissed off bee sting.)
the only intra-muscular DMD for MS is Avonex, all of the others are sub-Q (into the fat only)
the only intra-muscular DMD for MS is Avonex, all of the others are sub-Q (into the fat only)
Thanks, Noahma, you can tell I didn't do my homework, can't you!
ETA: The Avonex insert uses a different technique for IM injections; that's why I told how I give the shots. The "pissed-off bee sting" sounds miserable; but then again, I'm allergic to bees so that's my opinion.
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Wasn't trying ignore you guys I just haven't come up with a viable theory on the fellas yet! 
Mind like a sieve sometimes! 
