Aa
Tecfidera or copaxone
Those who know me know my struggles w/ taking mess. ( scared).
Brief recap: newly diagnosed, light lesion load, one attack w/ optical neuritis, off and on symptoms.. Overall feel " normal".
I like he idea that copaxone is the more " natural" of chouces.. But I'm reading the 40 3x brings on some issues, and being newly approved I'm wondering if it's safe. There's the 20 Daily.. But injections are not fun and I know can lead to other skin issues ect.
Or..
Take a pill. Easier, but I think if I'm reding correctly, more side effects potentially. I know I tested negative for the ppl or whatever that is that causes death ? ( doc checked while running vitamin d work).
Any advise or thoughts on what route you'd take?
Brief recap: newly diagnosed, light lesion load, one attack w/ optical neuritis, off and on symptoms.. Overall feel " normal".
I like he idea that copaxone is the more " natural" of chouces.. But I'm reading the 40 3x brings on some issues, and being newly approved I'm wondering if it's safe. There's the 20 Daily.. But injections are not fun and I know can lead to other skin issues ect.
Or..
Take a pill. Easier, but I think if I'm reding correctly, more side effects potentially. I know I tested negative for the ppl or whatever that is that causes death ? ( doc checked while running vitamin d work).
Any advise or thoughts on what route you'd take?
Thank you guys! Or.. Girls :)
I know I'm allergic to zofran ( terrible nausea / vomiting while pregnant).. So I had to deal with it. So.. If it's just stomach issues maybe I can manage it.
I need to find out if the needles can be shorter for injections. Copaxone is my first choice of I can handle the injections.. And/or whatever comes w/ it.
I just returned from my physical and had to unload the whole thing again. I'm crying everywhere.. Lol. She is certainly pro treat. Wants to see me in 3 months to make sure I'm not depressed. She knows it's situational ... But wants to make sure I'm on the mess by then and doing ok. I'm fortunate to have great doctors. I just need to trust them and like you say Karen.. Take the plunge. And Alex.. Thank you too. Your right. Perspective is huge. I think I've just needed to accept this and move on. Now I need to. I'll see my neurologist in 3 weeks. I'm hopeful we can work a treatment plan out together. Thx again everyone!
I know I'm allergic to zofran ( terrible nausea / vomiting while pregnant).. So I had to deal with it. So.. If it's just stomach issues maybe I can manage it.
I need to find out if the needles can be shorter for injections. Copaxone is my first choice of I can handle the injections.. And/or whatever comes w/ it.
I just returned from my physical and had to unload the whole thing again. I'm crying everywhere.. Lol. She is certainly pro treat. Wants to see me in 3 months to make sure I'm not depressed. She knows it's situational ... But wants to make sure I'm on the mess by then and doing ok. I'm fortunate to have great doctors. I just need to trust them and like you say Karen.. Take the plunge. And Alex.. Thank you too. Your right. Perspective is huge. I think I've just needed to accept this and move on. Now I need to. I'll see my neurologist in 3 weeks. I'm hopeful we can work a treatment plan out together. Thx again everyone!
1 Comments
Copaxone has an injector pen you can use to set the depth. From personal experience, it's not that hard, once you've had a nurse come out to check which depths yoy should be strong the pen for.
Let me put in a good word for Tec. I was recently - Nov of last year - diagnosed myself, therefore I am not all that far from the shocker of going down the list of meds and their possible side effects. I feel ya, I do.
But the others are right, that progression WILL happen, and whenever it happens will be a bad time for it. Since diagnosis I've had one relapse already - I'd not been on the med long enough to really know how it was working (only 3 weeks at the time), and if anything will drive home the unpredictability of this disease, it's that first relapse. I'd recovered, but BAM! There I was, back to having massive difficulty walking. I'm lucky it was only that and not something worse.
That said, I've been on Tec going into my 5th month now, and other than a couple of rough-ish weeks during the first month and a half - dealing with nausea (which was easily controlled with a script for Zofran), and ongoing random flushing (kinda like a 30 minute sunburn, then gone), I've had a good time of it. It is taken twice daily, every 12 hours, and I find it convenient. Whether it works going forward is still to be determined, but I can't complain about horrible side effects because for me there aren't any.
I read all the horror stories too, but I figured I had to take the plunge, and I'm glad I did. I know all this is heavy and scary, but please don't make your decision out of fear. Remember, any med you take does NOT have to be continued if you can't tolerate it, and in the case of Tec, I found the ones I had and still have, to be mild and transient.
Best to you in your decision!
Karen
But the others are right, that progression WILL happen, and whenever it happens will be a bad time for it. Since diagnosis I've had one relapse already - I'd not been on the med long enough to really know how it was working (only 3 weeks at the time), and if anything will drive home the unpredictability of this disease, it's that first relapse. I'd recovered, but BAM! There I was, back to having massive difficulty walking. I'm lucky it was only that and not something worse.
That said, I've been on Tec going into my 5th month now, and other than a couple of rough-ish weeks during the first month and a half - dealing with nausea (which was easily controlled with a script for Zofran), and ongoing random flushing (kinda like a 30 minute sunburn, then gone), I've had a good time of it. It is taken twice daily, every 12 hours, and I find it convenient. Whether it works going forward is still to be determined, but I can't complain about horrible side effects because for me there aren't any.
I read all the horror stories too, but I figured I had to take the plunge, and I'm glad I did. I know all this is heavy and scary, but please don't make your decision out of fear. Remember, any med you take does NOT have to be continued if you can't tolerate it, and in the case of Tec, I found the ones I had and still have, to be mild and transient.
Best to you in your decision!
Karen
1 Comments
I chose copaxone. We don't have the 40 mg option in Canada yet, so I inject daily.
My reasoning was -- I don't at this point want to suppress my immune system.
The injections are definitely more complicated, but after starting out awkwardly, I can do them in my sleep.
My legs didn't do well and I've to dx them from the rotation. Shared solutions are extremely helpful -- can't say enough about them.
My neuro was surprisingly unenthusiastic about Tec. Odd because many take it with few issues. He told me he had too many patients becoming non-compliant because of side effects. His other recommendation for me was Aubagio.
i would rather have skin reactions than some of the more serious side effects of other meds. So far no IPIR :).
My reasoning was -- I don't at this point want to suppress my immune system.
The injections are definitely more complicated, but after starting out awkwardly, I can do them in my sleep.
My legs didn't do well and I've to dx them from the rotation. Shared solutions are extremely helpful -- can't say enough about them.
My neuro was surprisingly unenthusiastic about Tec. Odd because many take it with few issues. He told me he had too many patients becoming non-compliant because of side effects. His other recommendation for me was Aubagio.
i would rather have skin reactions than some of the more serious side effects of other meds. So far no IPIR :).
The FDA requires all medications to list all side effects. No medication comes with out risk. I am allergic to Tylenol. I take it and I can't breath. Many other medications have Tylenol in them. It is all benefit/risk. No two people react the same to a medication. In the old days of MS there were no DMDs only chemotherapy. Talk to any who got MS back then they will tell you how lucky we are. Most side effects are manageable.
I have been on chemo for three years. The side effects take pages to list. I do not get them all.The ones I do get the doctors deal with right a way. I live a normal life. It is good to have a frank discussion with your doctor. They know your MS the best.
Alex
I have been on chemo for three years. The side effects take pages to list. I do not get them all.The ones I do get the doctors deal with right a way. I live a normal life. It is good to have a frank discussion with your doctor. They know your MS the best.
Alex
COMMUNITY LEADER
Hey babe,
I honestly think you 'might be' misinterpreting "Attitude adjustment" towards DMD's in to it meaning you have a "bad attitude"......IF so, wipe that idea right out of your mind!
You are understandably scared, anybody with a pulse is scared of the totally unpredictable nature of MS, accepting MS and all it entails can be even harder to get your head around when you feel 'normal', with having to treat MS with injectable DMD's just makes your MS all the more real......
Having to choose which DMD to take isn't necessarily always a good thing, it can inadvertently throw complications at you that you don't need, which is additionally unfair as it doesn't help.
Knowing your MS was caught early and that there are effective DMD's now, is probably the best case scenario to have with MS. The process of learning about DMD's and having to choose one when there's so many what if's involved, can understandably turn everything into being overwhelming real fast.......breath!
You do not have to make a choice right this minute.......there is time to get through all your what if road blocks, so you can make an informed choice that you are comfortable with but please be very very cautious of buying into anyone or any article that implies or advices MSers that the DMD's are worse than the disease, and or tell incredible stories 'suggesting or claiming' MSer's don't require DMD's etc
It's very true that the negatives of anything, will get more attention than the positives but the reality is simply that for the majority of people, they haven't experienced side effects to the same degree, the awfully bad experiences you'll read about are just not the norm......yes it's true that there are known side effects but 'what if' none of these issues ever happen to YOU and your DMD choice doesn't make YOU feel miserable, which is just as equally possible too.
You have a legitimate injecting concern because of your natural body type which limits your fat quotant, and imho this concern really does need to be discussed with your neurologist, it may alter which DMD would be best suited to your body type and ultimately help with the decision making.
HUGS.............JJ
PS.......Breath!
I honestly think you 'might be' misinterpreting "Attitude adjustment" towards DMD's in to it meaning you have a "bad attitude"......IF so, wipe that idea right out of your mind!
You are understandably scared, anybody with a pulse is scared of the totally unpredictable nature of MS, accepting MS and all it entails can be even harder to get your head around when you feel 'normal', with having to treat MS with injectable DMD's just makes your MS all the more real......
Having to choose which DMD to take isn't necessarily always a good thing, it can inadvertently throw complications at you that you don't need, which is additionally unfair as it doesn't help.
Knowing your MS was caught early and that there are effective DMD's now, is probably the best case scenario to have with MS. The process of learning about DMD's and having to choose one when there's so many what if's involved, can understandably turn everything into being overwhelming real fast.......breath!
You do not have to make a choice right this minute.......there is time to get through all your what if road blocks, so you can make an informed choice that you are comfortable with but please be very very cautious of buying into anyone or any article that implies or advices MSers that the DMD's are worse than the disease, and or tell incredible stories 'suggesting or claiming' MSer's don't require DMD's etc
It's very true that the negatives of anything, will get more attention than the positives but the reality is simply that for the majority of people, they haven't experienced side effects to the same degree, the awfully bad experiences you'll read about are just not the norm......yes it's true that there are known side effects but 'what if' none of these issues ever happen to YOU and your DMD choice doesn't make YOU feel miserable, which is just as equally possible too.
You have a legitimate injecting concern because of your natural body type which limits your fat quotant, and imho this concern really does need to be discussed with your neurologist, it may alter which DMD would be best suited to your body type and ultimately help with the decision making.
HUGS.............JJ
PS.......Breath!
So the Tec is working for you. What made you switch from avonex? How do these docs know when to switch you?
I don't know what's up but I get off and on bilateral jaw aching. Some say stress. I suppose. Certainly this is a stressful time. But reinforces I need to do something. I suppose I'll try the copaxone and try and get over the fear of injections. However the pills if tolerable are so much more convenient.
Ill figure it out. Thx thx for listening.
I don't know what's up but I get off and on bilateral jaw aching. Some say stress. I suppose. Certainly this is a stressful time. But reinforces I need to do something. I suppose I'll try the copaxone and try and get over the fear of injections. However the pills if tolerable are so much more convenient.
Ill figure it out. Thx thx for listening.
Keep in mind that it's the people who have complaints who are motivated to post on web sites. That's just human nature, but it does skew the impressions some others get of the DMDs. However, they are not awful.
It's a personal decision whether or not to treat MS. I didn't want to have to kick myself around the block if I had a relapse that proved catastrophic, so I chose to treat it, knowing I'm doing everything I can to keep this disease at bay. Since short of PML, none of the possible effects of the treatment drugs is remotely catastrophic, I feel I made a good choice.
ess
It's a personal decision whether or not to treat MS. I didn't want to have to kick myself around the block if I had a relapse that proved catastrophic, so I chose to treat it, knowing I'm doing everything I can to keep this disease at bay. Since short of PML, none of the possible effects of the treatment drugs is remotely catastrophic, I feel I made a good choice.
ess
I think what must happen is the bad press gets more attention. So upon my research it's not so much having a "bad attitude" towards treating.. It's the idea that the side effects may prove more harmful than good. You start to wonder if I have two relapses in 40 years.. But feeling miserable daily on drugs.. Is it worth it? I don't know, I'm still trying to understand this disease.
I'm realizing nobody has the same story. But aren't there at least patterns? Diagnosed late with minimal to no symptoms. Some say do another MRI in a year and see.. Some say start.
It's so confusing and scary. Not a bad attitude. Just trying to figure me out.
I'm realizing nobody has the same story. But aren't there at least patterns? Diagnosed late with minimal to no symptoms. Some say do another MRI in a year and see.. Some say start.
It's so confusing and scary. Not a bad attitude. Just trying to figure me out.
Hey there. No DMD is 'awful,' so you need to rub this word out of your vocabulary!
Hundreds of thousands of people use one or another of the many treatments now available. If one isn't effective or has side effects that can't be well-managed (and most side effects can be minimized), then they switch to something else. Not a big deal.
I started with Copaxone, but found as time passed that I had become allergic to it, which my neuro agreed with. That happens to a few people. So I switched to Avonex and was on that for years. Last year I started on Tec. I had some gastro symptoms, so under doctor's orders I backed off and started more slowly. Since then, piece of cake. No side effects whatever for me. Personally I'd much rather take a pill than do a shot.
As you will read here over and over, everyone's different, so there's certainly no one right answer. But you will make yourself miserable if you react with horror at getting treatment for a very serious illness, treatment that wasn't even available a generation ago. Attitude adjustment time!
ess
Hundreds of thousands of people use one or another of the many treatments now available. If one isn't effective or has side effects that can't be well-managed (and most side effects can be minimized), then they switch to something else. Not a big deal.
I started with Copaxone, but found as time passed that I had become allergic to it, which my neuro agreed with. That happens to a few people. So I switched to Avonex and was on that for years. Last year I started on Tec. I had some gastro symptoms, so under doctor's orders I backed off and started more slowly. Since then, piece of cake. No side effects whatever for me. Personally I'd much rather take a pill than do a shot.
As you will read here over and over, everyone's different, so there's certainly no one right answer. But you will make yourself miserable if you react with horror at getting treatment for a very serious illness, treatment that wasn't even available a generation ago. Attitude adjustment time!
ess
Thank you corriel!
I have been looking and looking and trying to find anything other than DMD s ... But nothing will help w/ progression it seems other than the drugs. I'm hoping there's some new research coming foward , but in the meantime I know I need to do SOMEThiNG! I wish I could take megadoses of vitamin d and call it a day. I think I read there is some research in Cleveland looking into that. Apparently vitamin d turns into a hormone in our bodies.. Maybe something will come..
In the meantime I need to figure it out. Injections sound awful, and I mentioned I m quite thin with minimal " fat" .. So I don't have a lot of site options. AND I read how some have passed out!! That is scary. I think maybe hitting a vein or something.
It's just plain awful. This entire disease process. I feel for those in all realms of it.
Thx for listening.. And no post is ever too long!!
I have been looking and looking and trying to find anything other than DMD s ... But nothing will help w/ progression it seems other than the drugs. I'm hoping there's some new research coming foward , but in the meantime I know I need to do SOMEThiNG! I wish I could take megadoses of vitamin d and call it a day. I think I read there is some research in Cleveland looking into that. Apparently vitamin d turns into a hormone in our bodies.. Maybe something will come..
In the meantime I need to figure it out. Injections sound awful, and I mentioned I m quite thin with minimal " fat" .. So I don't have a lot of site options. AND I read how some have passed out!! That is scary. I think maybe hitting a vein or something.
It's just plain awful. This entire disease process. I feel for those in all realms of it.
Thx for listening.. And no post is ever too long!!
Darn, I just remembered I forgot to tell you that we have a thread on here somewhere for BG12 which is Tecfidera.
All of us Tec users post to it now and again. I will find the link and send you a message.
All of us Tec users post to it now and again. I will find the link and send you a message.
Hi there, I have only been diagnosed for two years and I think I have approximately a dozen lesions 90% of which are 8 mm or larger. My biggest physical symptom was a bilateral visual field loss (not optic neuritis) that lasted the better part of 6 months. I have cognitive issues, mild balance issues and spasticity and occasional muscle weakness/tingling.
I spent the first year on Rebif. Miserable site injection reactions and a mild fever the morning after the shots (3 times/week). Overall I didn't feel good on Rebif but my MS was new and really active so it may not have been the drug. Because my arms are spastic and I have issues with my hands over the last 18 months doing injections was becoming difficult.
I jumped onto Tecfidera like a lifeline when it was approved where I live and that was 11 months ago.
I was one of the few (so Biogen states) to have problems with my absolute lymphocyte count. This essentially makes one immuno-compromised and increases the chance of PML which is the dreaded acronym MS folks do not like to hear.
My absolute lymphocytes finally got back in normal range after 9 months. I can honestly say that I didn't feel any different during those months and I didn't get sick so it wasn't horrible.
I also was unfortunate enough to have severe GI pain and nausea and had to go back down to the starter dose of Tec and re-titrate over a 2-month period.
I get occasional flushing and sometimes I get a rash that accompanies the flushing but it will go away if I take aspirin. Nothing else works and it is what Biogen recommends. If you have an allergy to aspirin or can't take it for any other reason, that should factor strongly in your decision.
I also know of many people who had flushing with no GI symptoms and apparently very few have issues with the absolute lymphocytes. Everyone is different.
Tecfidera needs be taken faithfully, on a strict schedule to avoid as many side effects as possible. 10-12 hours apart and approximately 20-30 minutes after eating (they recommend something fatty with protein at Biogen).
I have never tried Copaxone so I cannot speak to that one.
I can say that if I hadn't been having issues performing the injections, I would've kept the Rebif and if I had to do it all over again I am not sure I would've have swtiched to Tecfidera.
I do recommend that you research all disease modifying drugs (DMDs) so that you can make the best decision that works for you and your lifestyle. The side effects for all are readily available and give a good picture of what you will be living with.
I apologize for the length of this post and I wish you the best of luck in your decision.
I also want to welcome you to our group. As you've experienced, we're a cool, fun crowd. :)
Corrie
I spent the first year on Rebif. Miserable site injection reactions and a mild fever the morning after the shots (3 times/week). Overall I didn't feel good on Rebif but my MS was new and really active so it may not have been the drug. Because my arms are spastic and I have issues with my hands over the last 18 months doing injections was becoming difficult.
I jumped onto Tecfidera like a lifeline when it was approved where I live and that was 11 months ago.
I was one of the few (so Biogen states) to have problems with my absolute lymphocyte count. This essentially makes one immuno-compromised and increases the chance of PML which is the dreaded acronym MS folks do not like to hear.
My absolute lymphocytes finally got back in normal range after 9 months. I can honestly say that I didn't feel any different during those months and I didn't get sick so it wasn't horrible.
I also was unfortunate enough to have severe GI pain and nausea and had to go back down to the starter dose of Tec and re-titrate over a 2-month period.
I get occasional flushing and sometimes I get a rash that accompanies the flushing but it will go away if I take aspirin. Nothing else works and it is what Biogen recommends. If you have an allergy to aspirin or can't take it for any other reason, that should factor strongly in your decision.
I also know of many people who had flushing with no GI symptoms and apparently very few have issues with the absolute lymphocytes. Everyone is different.
Tecfidera needs be taken faithfully, on a strict schedule to avoid as many side effects as possible. 10-12 hours apart and approximately 20-30 minutes after eating (they recommend something fatty with protein at Biogen).
I have never tried Copaxone so I cannot speak to that one.
I can say that if I hadn't been having issues performing the injections, I would've kept the Rebif and if I had to do it all over again I am not sure I would've have swtiched to Tecfidera.
I do recommend that you research all disease modifying drugs (DMDs) so that you can make the best decision that works for you and your lifestyle. The side effects for all are readily available and give a good picture of what you will be living with.
I apologize for the length of this post and I wish you the best of luck in your decision.
I also want to welcome you to our group. As you've experienced, we're a cool, fun crowd. :)
Corrie
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