Aa
diagnosed with ms
I just got back from the doctors and was told that i have ms. Now i have the hard decision to decide what medications to take. Can anybody tell me the pros and cons about the different meds. I have a bunch of papers to read about each one, but they are all written by the drug companys that make them. I want to hear from people that take these please. Thank you in advance for any advice that you can throw my way!!
I think the auto-injector is probably the easiest. Especially when you are first starting out.
Some people have injection site issues with it because it goes in so fast. When you do it manually, you have more control over that part of it.
When I used the manual way one time in my right thigh not too long ago, I accidentally hit my muscle in my thigh and that hurt like crazy. With the auto-injector, I can't really see that happening. I had switched to using the manual inject on my legs because I had lost so much weight/fat, it was getting more painful to inject with the auto-injector.
-Kelly
Some people have injection site issues with it because it goes in so fast. When you do it manually, you have more control over that part of it.
When I used the manual way one time in my right thigh not too long ago, I accidentally hit my muscle in my thigh and that hurt like crazy. With the auto-injector, I can't really see that happening. I had switched to using the manual inject on my legs because I had lost so much weight/fat, it was getting more painful to inject with the auto-injector.
-Kelly
I use Copaxone. I started with the autoject and learned to manually inject a few months later. Now I use manual for some injection sites and autoject for others. Everyone is different, so it really comes down to personal preference.
I am glad I had the autoject to start with because it definitely helped to be able to inject without having to look at the needle going in during the early days.
Best wishes with whichever technique you choose to start with. Remember, you can always call the nurse back later for more training.
- Jane
I am glad I had the autoject to start with because it definitely helped to be able to inject without having to look at the needle going in during the early days.
Best wishes with whichever technique you choose to start with. Remember, you can always call the nurse back later for more training.
- Jane
What is better when taking copaxone. The auto injector or to do it manually? Im hoping to see the ms nurse on wednesday. I have decided to start with copaxone and hoping that will be the right choice.
Tina
Tina
I love it when our docs encourage us to learn about the disease modifying drugs and ask for our input. I hate it when our docs take so little responsibility to help guide us in a direction they think might be best.
Whichever drug you end up starting, there are usually opportunities to change later if it doesn't work out. My doc did tell me that he prefers his patients to stay with a given therapy for a minimum of six months unless there are compelling reasons to end therapy. He believes that is the minimum for individual adjustment and evaluation of benefit.
I've been on Copaxone since my official diagnosis over two years ago. It isn't perfect but I noticed the injections went a lot smoother after about seven months. I also started to feel significantly better at that time. I plan to stay with Copaxone since it appears to be working for me.
Lulu usually links us to an online interactive tool that makes it a little easier to make a decision about which drug to start with. I'll try to find it or maybe she'll see this and help me out.
Don't worry too much about choosing the 'right' one because the one you choose will be right for you.
Mary
Whichever drug you end up starting, there are usually opportunities to change later if it doesn't work out. My doc did tell me that he prefers his patients to stay with a given therapy for a minimum of six months unless there are compelling reasons to end therapy. He believes that is the minimum for individual adjustment and evaluation of benefit.
I've been on Copaxone since my official diagnosis over two years ago. It isn't perfect but I noticed the injections went a lot smoother after about seven months. I also started to feel significantly better at that time. I plan to stay with Copaxone since it appears to be working for me.
Lulu usually links us to an online interactive tool that makes it a little easier to make a decision about which drug to start with. I'll try to find it or maybe she'll see this and help me out.
Don't worry too much about choosing the 'right' one because the one you choose will be right for you.
Mary
I have been diagnosed with Progressive MS since July 2008 at the age of 64. I was offered one of three interferons or Copaxone.
Because I'd known several people that took an interferon for Hepatitis C And, because it destroyed their ability to fight infection that lead to flu type illnesses, so they were sick all the time, I chose Copaxone. (I know, the interferons are different. I just didn't want to chance it.)
I hate that I have to shoot daily but it's not all that bad. I don't do my arms. Awhile back I told my doctor if I had to do arms I'd quit. It hurt so bad I was rotating 5 sites instead of seven. He told me I could do the pad of skin on my side. To the back, above the belt. (I call it love handles).
I try to follow a routine and not think about it, no hesitations, that helps. I don't write or mark a chart. I memorized location in order of day of week (Monday, belly. I still use my original memorized = arm, arm, belly, hip, hip, thigh, thigh.
Nancy
Because I'd known several people that took an interferon for Hepatitis C And, because it destroyed their ability to fight infection that lead to flu type illnesses, so they were sick all the time, I chose Copaxone. (I know, the interferons are different. I just didn't want to chance it.)
I hate that I have to shoot daily but it's not all that bad. I don't do my arms. Awhile back I told my doctor if I had to do arms I'd quit. It hurt so bad I was rotating 5 sites instead of seven. He told me I could do the pad of skin on my side. To the back, above the belt. (I call it love handles).
I try to follow a routine and not think about it, no hesitations, that helps. I don't write or mark a chart. I memorized location in order of day of week (Monday, belly. I still use my original memorized = arm, arm, belly, hip, hip, thigh, thigh.
Nancy
I had my first Tysabri infusion yesterday, but was previously on Copaxone. I liked the Copaxone, but am one of the lucky 4% who had migraines as a side effect. I've always had headache issues, but the beginning of month 2 they started getting much, much worse and nothing helped them. Took me a little while to figure out what was causing them. Other than that I didn't have bad site reactions at all.
Good luck with your decision!
Chris
Good luck with your decision!
Chris
Getting the dx is both a good and bad thing - Bad that we have MS good that we know what we have and can begin the fight.
I have been on Avonex since January - dx in December. My Neuro did the same thing gave me a bunch of books and I chose. The once a week shot thing was pretty much what convinced me! I don't have any injection site issues. Yes sticking a needle in your leg once a week is daunting but not hard. And the only side effect I had in the beginning was a headache and that was only on the first and 2nd full dose - After that nothing. I do pre- medicate so that helps. Aleve the night before the morning of and the night I give myself the shot. It works for me at least!
I hope this helps and let us know your decision. This forum is so very helpful as you navigate this new road!
Tracy
I have been on Avonex since January - dx in December. My Neuro did the same thing gave me a bunch of books and I chose. The once a week shot thing was pretty much what convinced me! I don't have any injection site issues. Yes sticking a needle in your leg once a week is daunting but not hard. And the only side effect I had in the beginning was a headache and that was only on the first and 2nd full dose - After that nothing. I do pre- medicate so that helps. Aleve the night before the morning of and the night I give myself the shot. It works for me at least!
I hope this helps and let us know your decision. This forum is so very helpful as you navigate this new road!
Tracy
I'm sorry to hear you have MS. I was Dx about 6 weeks ago. I picked copaxone as it just seemed the safest choice. The daily injection for me isn't a big deal now, but I was freaked out at first. I'm on week three and so far so good. I have no site reactions just alittle redness after the injection. I don't even feel the injection most of the time, its a really small needle. It does sting after for about 30 mins but its really not that bad.
Remember though, if it doesn't work for you you can switch to another :)
Remember though, if it doesn't work for you you can switch to another :)
I have been on Rebif for about a month now. As long as I take two ibuprofen about 30 min to one hour before hand, I have no side effects. I do get hot flashes, but they come and go fairly quickly. I do not get headaches. I was reluctant to try Rebif b/c of all the possible side effects and the stories I had read, but the 3X a week shot VS an everyday shot is what convinced me. I am glad I did, b/c 3X a week is a lot. I could only imagine having to do it everyday, and hope I never do. Although, my family doctor and MS Specialist also said that if the side effects were extremely bothersome, after six months, it could be changed. I use the auto inject most of the time and have had minimal site reaction. It just feels like a pinch for a split second. Just remember that everyone reacts differently to each of the drugs. You can have twenty people in the room with you who take Rebif and twenty who take Copaxone and the chances are that you'll have twenty different symptom reactions from both sides.
I remember how overwhelming I felt when I was diagnosed several months ago. All the testing and waiting. Then decisions. The anxiety. It's good that you've found this site to have people to talk to who are in similar situations.
I remember how overwhelming I felt when I was diagnosed several months ago. All the testing and waiting. Then decisions. The anxiety. It's good that you've found this site to have people to talk to who are in similar situations.
thank you for all the replies. i have been leaning towards copaxone for simple fact that there are not as many side affects. i also have migranes and anything that might give you headaches puts me off from trying it. it is starting to feel like my head is about to explode with all the information that i have been reading. im starting to wish the docor said here is the perscription and we will see how it works with no decision on my part. :) i was told yesterday that i have ms and now trying to decide what route to take is just a little much. but at least i now know what is going on with my body. again thank you all.
Tina
Tina
Hi tcm,
Ugh, the dreaded decision. I couldn't decide either even after reading all the literature and the net until my head was spinning. In the end, I left it up to my doc, and asked straight up "What one would you pick for me?" He said Rebif. I'm on it, and doing very well. Reading all the potentials can make you batty.
In the end, all meds come with risk, as does life in general. My side affects were minimal, and the needle is super thin, and so that made it easy.
What you've probably been reading alot of is injection frequency, and I admit, it's something I did not give alot of thought to. I was WAY too focused on picking the "perfect" med to fix this thing they call MS.
Now though, I know it is one of the most important 1st decisions one must make for his reason.... Compliance. If you are on an injection schedule that you will not keep for the long run, you won't take your meds as scheduled.
So, if you are the type of person that would rather not be bothered with injecting everyday, then Copaxone may not be the one for you. If you want a once a week, then AVonex is the way to go (they have a new injection pen that looks fab btw).
For me, I'm right in the middle with Rebif @ 3xs a week.
My initial thoughts of the "perfect" med to fix my MS was indeed what was keeping me from diving in and just picking one. What I've learned now is that if you pick one, and it's not working, you can always switch after a fair trial period, and that may be a year for some.
Please ask anything - we've discussed the ups and downs of this alot, and we can pull up old discussions on the same picking dilemma. Some of those thoughts from members may help you get past the initial anxst.
Hope this helps,
-shell
Ugh, the dreaded decision. I couldn't decide either even after reading all the literature and the net until my head was spinning. In the end, I left it up to my doc, and asked straight up "What one would you pick for me?" He said Rebif. I'm on it, and doing very well. Reading all the potentials can make you batty.
In the end, all meds come with risk, as does life in general. My side affects were minimal, and the needle is super thin, and so that made it easy.
What you've probably been reading alot of is injection frequency, and I admit, it's something I did not give alot of thought to. I was WAY too focused on picking the "perfect" med to fix this thing they call MS.
Now though, I know it is one of the most important 1st decisions one must make for his reason.... Compliance. If you are on an injection schedule that you will not keep for the long run, you won't take your meds as scheduled.
So, if you are the type of person that would rather not be bothered with injecting everyday, then Copaxone may not be the one for you. If you want a once a week, then AVonex is the way to go (they have a new injection pen that looks fab btw).
For me, I'm right in the middle with Rebif @ 3xs a week.
My initial thoughts of the "perfect" med to fix my MS was indeed what was keeping me from diving in and just picking one. What I've learned now is that if you pick one, and it's not working, you can always switch after a fair trial period, and that may be a year for some.
Please ask anything - we've discussed the ups and downs of this alot, and we can pull up old discussions on the same picking dilemma. Some of those thoughts from members may help you get past the initial anxst.
Hope this helps,
-shell
I've been on Copaxone - well, this coming Sept will be 2 yrs. My neuro at the time didn't give me a choice. He just said that he wanted to start me on Copaxone.
I didn't disagree because I didn't want the flu-like symptoms as some of the other DMDs may have. Also, the injection is sub-cutaneous - not intramuscular. I think I might be afraid to take one of those.
There is the oral DMD, Gilenya. However, I've read that there have been several death related to it. I not willing to take that chance.
Good luck with your decision.
-Kelly
I didn't disagree because I didn't want the flu-like symptoms as some of the other DMDs may have. Also, the injection is sub-cutaneous - not intramuscular. I think I might be afraid to take one of those.
There is the oral DMD, Gilenya. However, I've read that there have been several death related to it. I not willing to take that chance.
Good luck with your decision.
-Kelly
I classify PML as a side effect (as does Biogen; see link below) and stand by what I wrote. Yes the risks of developing it are extremely small, but it’s a potentially serious side effect, obviously, which is why Tysabri is usually not a first option.
It has been rewarding to hear that Kyle and many others have had little to no trouble with Tysabri, and I certainly would encourage others such as Monica to use Tysabri if their doctors were directing them that way. However, as I said before, there is no free ride, and many patients have dealt with side effects of varying degrees. Biogen lists those (companies have to list even those that are rare, so the potential effects are never as oppressive at it seems) at http://www.tysabri.com/tysabri-side-effects.xml.
As Jane notes, compliance is key. Some injectible medicines have auto-injectors to aid in compliance … although some patients prefer not to use them for various reasons. Know that there likely will be days you’re too sick or tired (MS or otherwise) to self-inject, so if you have someone who can give you shots on those off days (or on all days like me), the autoinjector may not be as important. In addition, the caregiver(s) may have an opinion what they’d be willing to go through training for.
It has been rewarding to hear that Kyle and many others have had little to no trouble with Tysabri, and I certainly would encourage others such as Monica to use Tysabri if their doctors were directing them that way. However, as I said before, there is no free ride, and many patients have dealt with side effects of varying degrees. Biogen lists those (companies have to list even those that are rare, so the potential effects are never as oppressive at it seems) at http://www.tysabri.com/tysabri-side-effects.xml.
As Jane notes, compliance is key. Some injectible medicines have auto-injectors to aid in compliance … although some patients prefer not to use them for various reasons. Know that there likely will be days you’re too sick or tired (MS or otherwise) to self-inject, so if you have someone who can give you shots on those off days (or on all days like me), the autoinjector may not be as important. In addition, the caregiver(s) may have an opinion what they’d be willing to go through training for.
Hi!
I was diagnosed last week and am in the same boat as you. They handed me a big bag of drug company info and I've been researching and getting opinions ever since. It's a little overwhelming, isn't it? Not just the drugs but trying to come to terms with the diagnosis. I think I'm still in denial. I had my blood test Tuesday for the JC virus. My MS neuro is obviously pursuing it as a first option, although at this point, I don't know which direction I'll go. I wish you the best as you're making this decision and peace as the diagnosis is sinking in.
Monica
I was diagnosed last week and am in the same boat as you. They handed me a big bag of drug company info and I've been researching and getting opinions ever since. It's a little overwhelming, isn't it? Not just the drugs but trying to come to terms with the diagnosis. I think I'm still in denial. I had my blood test Tuesday for the JC virus. My MS neuro is obviously pursuing it as a first option, although at this point, I don't know which direction I'll go. I wish you the best as you're making this decision and peace as the diagnosis is sinking in.
Monica
Hi - Better the devil you know than the devil you don't :-) At least know you know what has been ailing you and can set about fighting it!
I agree with everything that has bee said, with one major exception.
"Tysabri's are such that it's not usually used as a first option."
Tysabri is the only DMD I have ever used (a whopping 7 infusions so far!) and I have had no dies effects what so ever! Zero, zip, zilch! I think you will find the near complete lack of side effects common among Tysabri users.
Tysabri is typically reserved for those not responding to CRAB therapies and those whose MS, when diagnosed, has progressed beyond the reach of CRAB's. I fall into the latter group.
The issue with Tysabri is not side effects, but rather PML (progressive multifocal leukoencephalopathy). PML is an often fatal brain disease. The risk of developing PML vary depending on whether or not you have used other immuno-suppressant therapies and whether or not you test positive for the JC virus. If you have not previously used other immuno-suppressant therapies and test negative for the JC virus the risk is extremely small.
Just wanted to clear up the Tysabri/Dies effect thing :-)
Kyle
I agree with everything that has bee said, with one major exception.
"Tysabri's are such that it's not usually used as a first option."
Tysabri is the only DMD I have ever used (a whopping 7 infusions so far!) and I have had no dies effects what so ever! Zero, zip, zilch! I think you will find the near complete lack of side effects common among Tysabri users.
Tysabri is typically reserved for those not responding to CRAB therapies and those whose MS, when diagnosed, has progressed beyond the reach of CRAB's. I fall into the latter group.
The issue with Tysabri is not side effects, but rather PML (progressive multifocal leukoencephalopathy). PML is an often fatal brain disease. The risk of developing PML vary depending on whether or not you have used other immuno-suppressant therapies and whether or not you test positive for the JC virus. If you have not previously used other immuno-suppressant therapies and test negative for the JC virus the risk is extremely small.
Just wanted to clear up the Tysabri/Dies effect thing :-)
Kyle
I would second TLC's advice not to obsess too much about the decision, because all the options have pros and cons. As I've heard others say "The best DMD is the one that you can be the most compliant with".
I take Copaxone (since 02/02/12) and I'm happy with it. The site reactions are a bummer, and the possibility of lipoatrophy scares the bejeezus out of me, but I did not want to deal with possible headaches and flu-like symptoms for personal reasons. If someday I find Copaxone doesn't work for me, I would gladly try any of the other DMD's.
Good luck making your decision. I'm sorry to her about the diagnosis, but glad you found us and are moving forward with a positive attitude.
Best,
Jane
I take Copaxone (since 02/02/12) and I'm happy with it. The site reactions are a bummer, and the possibility of lipoatrophy scares the bejeezus out of me, but I did not want to deal with possible headaches and flu-like symptoms for personal reasons. If someday I find Copaxone doesn't work for me, I would gladly try any of the other DMD's.
Good luck making your decision. I'm sorry to her about the diagnosis, but glad you found us and are moving forward with a positive attitude.
Best,
Jane
Welcome to the club! For me (in 2004) and many others, diagnosis was in many ways a relief, because now we know what we’re up against, and we can frequently keep it at bay.
The common longtime therapies (the CRABs) have time-tested safety profiles and generally about the same statistics regarding slowing of disease progression. Certainly read what the drug companies have to say, but you’ll find more objective reports on sites like the National MS Society at this link: http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx
I've used Avonex with good results, both in terms of limited MS progression and limited side effects. Many patients grumble about the "flu-like" side effects of Avonex and the other interferons, especially in the first few weeks or months of treatment, but there are ways most of us can mitigate those effects. Copaxone has its own side effects, and Tysabri's are such that it's not usually used as a first option. Unfortunately, there is no free ride. Tired of poking myself or getting poked, I tried Gilenya for 19 days; its side effects proved dangerous for me, but it works well for others.
Take time with your selection, but try not to obsess, because there really is no wrong decision. There’s no way to predict if a drug will work with a particular individual, or what side effects might manifest. If you try a drug and you find it doesn’t work for you, you can switch, and maybe another one will work better. Or maybe it will work worse. For most people, I think it’s fair to say that the downsides of the drugs are still better than relapses and progression. Good luck as you battle this monster!
The common longtime therapies (the CRABs) have time-tested safety profiles and generally about the same statistics regarding slowing of disease progression. Certainly read what the drug companies have to say, but you’ll find more objective reports on sites like the National MS Society at this link: http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx
I've used Avonex with good results, both in terms of limited MS progression and limited side effects. Many patients grumble about the "flu-like" side effects of Avonex and the other interferons, especially in the first few weeks or months of treatment, but there are ways most of us can mitigate those effects. Copaxone has its own side effects, and Tysabri's are such that it's not usually used as a first option. Unfortunately, there is no free ride. Tired of poking myself or getting poked, I tried Gilenya for 19 days; its side effects proved dangerous for me, but it works well for others.
Take time with your selection, but try not to obsess, because there really is no wrong decision. There’s no way to predict if a drug will work with a particular individual, or what side effects might manifest. If you try a drug and you find it doesn’t work for you, you can switch, and maybe another one will work better. Or maybe it will work worse. For most people, I think it’s fair to say that the downsides of the drugs are still better than relapses and progression. Good luck as you battle this monster!
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
