Aa
Why change meds?
Hello!
So.. I'm on copaxone. Newly diagnosed since March ( for those who don't " know" me)... Going pretty well. Some Site reactions but doable.
My question:
If the DMD 's are formulated to slow down the amount of relapses, and yet the follow up MRI shows still, enhancing lesions, why do doctors want to change drugs IF you aren't having relapses. And I'm talking about the obvious relaoses that you know are relapses. For example: my MRI showed enhancing lesions which helped lead to the diagnosing. My doc says ok to ( my choice of copaxone) .. But that if the next MRI shows enhancing lesions yet again, he's "not going to be happy." Meaning he's going to suggest the drug isn't working which will then lead to discussion of a new drug choice.
But again... I may show lesions but isn't that the nature of ms? It is written ms is always active behind the scenes. You may feel well... But there is always activity. So... If I'm feeling well with regards to no relapsing... Why switch? DMD 's slow relapses.. Not activity. Isn't that correct? So in essence. The drug IS working because for 6 months you are relapse free. And by the way.. Studies show the drugs work better with longevity. At least copaxone.
Is my question clear?
So.. I'm on copaxone. Newly diagnosed since March ( for those who don't " know" me)... Going pretty well. Some Site reactions but doable.
My question:
If the DMD 's are formulated to slow down the amount of relapses, and yet the follow up MRI shows still, enhancing lesions, why do doctors want to change drugs IF you aren't having relapses. And I'm talking about the obvious relaoses that you know are relapses. For example: my MRI showed enhancing lesions which helped lead to the diagnosing. My doc says ok to ( my choice of copaxone) .. But that if the next MRI shows enhancing lesions yet again, he's "not going to be happy." Meaning he's going to suggest the drug isn't working which will then lead to discussion of a new drug choice.
But again... I may show lesions but isn't that the nature of ms? It is written ms is always active behind the scenes. You may feel well... But there is always activity. So... If I'm feeling well with regards to no relapsing... Why switch? DMD 's slow relapses.. Not activity. Isn't that correct? So in essence. The drug IS working because for 6 months you are relapse free. And by the way.. Studies show the drugs work better with longevity. At least copaxone.
Is my question clear?
Ok.. Well then I'm crossing my fingers.. I guess I just get confused with the lesions vs relapses with regards to meds and the role they play. Thx everyone!!!!
Shel,
Rituxan is a good medication. Most neurologists and insurance companies will not use it or allow it as a first DMD. It is chemotherapy so it has more risk.
Alex
Rituxan is a good medication. Most neurologists and insurance companies will not use it or allow it as a first DMD. It is chemotherapy so it has more risk.
Alex
HI Andi -
The goal of MS drugs is to keep new lesions from appearing. As everyone has there very own version of MS, we also have our own unique response to disease modifying drugs. What works for you won't work for me.
If you start Copaxone, and a six month subsequent MRI shows new lesions, Copaxone is not working for you. So you switch to another DMD.
Most of us have seen this movie and it's not really a big deal. For me it was Tysabri that stopped working. So I swithched to Rituxan :-)
Kyle
The goal of MS drugs is to keep new lesions from appearing. As everyone has there very own version of MS, we also have our own unique response to disease modifying drugs. What works for you won't work for me.
If you start Copaxone, and a six month subsequent MRI shows new lesions, Copaxone is not working for you. So you switch to another DMD.
Most of us have seen this movie and it's not really a big deal. For me it was Tysabri that stopped working. So I swithched to Rituxan :-)
Kyle
I see.. Ok. Well thank you all. I think I've had and maybe still experiencing a small relapse. Some noticeable new symptoms that are making me wonder if the copaxone is working. I've only started in June. So maybe too early to tell. I wonder how long to let it " keep trying"., but I suppose the next MRI will help determine. This is such a roller coaster ride in every way. Your right. I do have a wonderful doc. He's patient yet assertive . I'm thankful for this site and all the responses.. Ty!!
I' m new to all of this and I don't understand a lot of it either but I know based on what happened to me... For 5 years I was for the most part "mild". So much so I didn't even know I had MS, I was fine and the odd things that did happen remitted fully and they were insignificant, little tingling here and there. Absolutely no disability at all.
When I got hit this January, life as I knew it changed. The symptoms kept piling on and now, although I can do everything still, its a challenge and its har and very scary. I have so many symptoms, too many to list and they're nothing like they used to be. This is MS. Before it was early signs of MS.
My one and only set of MRIs showed black holes and axonal loss. But I'm walking, talking, still cutting hair... Like I said, not easy and I live in fear of the worse. I look normal and you would not know what's going on just from looking at me.
I will be deciding on a DMD next week. I had all the tests and labs done. I'm JCV negitive so I will do all I can to get Tysabri infusions. I want the most aggressive medication I can get in because of how aggressive this disease has been for me. When I was asymptomatic this disease was causing me permanent axonal loss and I had no idea. So, you can't go by lack of relapses, lack of symptoms. This can be doing its damage silently and once it has, that's it, damage can't be undone. There's no sense in being on a med to wait to change it when you get disabilities from it not working. Listen to your doc, sounds they want to be aggressive because, well you need to be treating this monster. MS is a stance bird, one can go all their life with little activity while others aren't so lucky. I want this activity haulted and no more disability. None.
When I got hit this January, life as I knew it changed. The symptoms kept piling on and now, although I can do everything still, its a challenge and its har and very scary. I have so many symptoms, too many to list and they're nothing like they used to be. This is MS. Before it was early signs of MS.
My one and only set of MRIs showed black holes and axonal loss. But I'm walking, talking, still cutting hair... Like I said, not easy and I live in fear of the worse. I look normal and you would not know what's going on just from looking at me.
I will be deciding on a DMD next week. I had all the tests and labs done. I'm JCV negitive so I will do all I can to get Tysabri infusions. I want the most aggressive medication I can get in because of how aggressive this disease has been for me. When I was asymptomatic this disease was causing me permanent axonal loss and I had no idea. So, you can't go by lack of relapses, lack of symptoms. This can be doing its damage silently and once it has, that's it, damage can't be undone. There's no sense in being on a med to wait to change it when you get disabilities from it not working. Listen to your doc, sounds they want to be aggressive because, well you need to be treating this monster. MS is a stance bird, one can go all their life with little activity while others aren't so lucky. I want this activity haulted and no more disability. None.
Enhancing lesions, just means "recent". Those lesions are currently "active" or were so in the last 40 days or so. In other words, there's new inflammation as compared to previous imaging.
This is an oversimplification, as MRIs can not in 2015, image every part of the brain, and image it perfectly. Things can get missed. My first two MRIs had both active and old lesions. Then I had several that seemed stable (only old lesions were seen, none enhanced). Then I had an enhancing lesion in 2013.
Had this been seen as a trend, as in my next couple of MRIs showed even more or if I had an objectively observable relapse, I'm sure my neurologist and I would have been having a chat about possibly changing medications.
Progression is used to mean both objective and functional changes, though sometimes less-than-ideal scales (EDSS) are used to quantify it as well.
DMDs aim to reduce the number of relapses, making our lives more liveable, stable, and functioning. It is unknown to what extent they change disease course in the long term.
These terms are all tough to tackle in the beginning. I wouldn't want to go through that early post-diagnostic time again, let me tell you! But the terminology becomes clearer, and the sky doesn't fall, and you find your feet. Whether or not you can feel them. ;)
I'm pretty sure I made that all more convoluted than I intended, but there's a lot of great folks on here. They'll ride to my clarification rescue!
This is an oversimplification, as MRIs can not in 2015, image every part of the brain, and image it perfectly. Things can get missed. My first two MRIs had both active and old lesions. Then I had several that seemed stable (only old lesions were seen, none enhanced). Then I had an enhancing lesion in 2013.
Had this been seen as a trend, as in my next couple of MRIs showed even more or if I had an objectively observable relapse, I'm sure my neurologist and I would have been having a chat about possibly changing medications.
Progression is used to mean both objective and functional changes, though sometimes less-than-ideal scales (EDSS) are used to quantify it as well.
DMDs aim to reduce the number of relapses, making our lives more liveable, stable, and functioning. It is unknown to what extent they change disease course in the long term.
These terms are all tough to tackle in the beginning. I wouldn't want to go through that early post-diagnostic time again, let me tell you! But the terminology becomes clearer, and the sky doesn't fall, and you find your feet. Whether or not you can feel them. ;)
I'm pretty sure I made that all more convoluted than I intended, but there's a lot of great folks on here. They'll ride to my clarification rescue!
Ok. Thank you.. Bare with me as I still try to grapple with the understanding of this disease. If I'm understanding.. enhancing lesions = progression. Where as I understood it as ....change in function = progression. So the role of DMD s aim to slow down relapses which mean progression. So every relapse means the disease is progressing?
MS medications are something (like everything about this disease) that we all have an ever-changing relationship. Like everything else, it evolves. Over the course of our disease 'career' it's practically inevitable that we'll change DMDs, whether due to disease activity, developing anti-bodies, insurance shenanigans, or the advent of a drug that we more able to adhere to or more satisfied with the data.
This is one of those things that just comes with the territory of a chronic, incurable disease that has a lot of medication options. It can be overwhelming to think about looking into a new medication when it feels like you just started the one you're on, but I personally find this a lot less overwhelming than the ol' "Diagnose and adios" of the not-too-distant days gone by. The disease changes us, and we have to be prepared to change tack accordingly. Yes, it is ultimately your choice. No, you don't have to feel pressured by your neurologist. But do know that it sounds like they're indeed following best practice on this one.
This is one of those things that just comes with the territory of a chronic, incurable disease that has a lot of medication options. It can be overwhelming to think about looking into a new medication when it feels like you just started the one you're on, but I personally find this a lot less overwhelming than the ol' "Diagnose and adios" of the not-too-distant days gone by. The disease changes us, and we have to be prepared to change tack accordingly. Yes, it is ultimately your choice. No, you don't have to feel pressured by your neurologist. But do know that it sounds like they're indeed following best practice on this one.
I have to agree here with everyone. I was dx in January started copaxone in February. When I relapsed a few months ago my neurologist talked to me about changing meds. When he did the new MRIs they did not show any new lesions. Which is good. He decided at this time to stay with the copaxone. But he wants to revisit at next appointment. It will depend on how things go over the next few months. I am very lucky that my neuro is in favor of periodic MRIs to check for any changes.
Leanne
Leanne
Ditto what has been said above and thank goodness your neuro is keen.
I really like my neuro but he gas told me he only considers dmd to be ineffective if I have 2 major relapses in a 12-month period.
Small flares don't even get me an MRI and he said that if I only have mild flares I could go as long as 5 years between scans so he is not concerned about lesions at all.
I disagree with his logic but so far I have had a major relapse each year so I am getting scans regularly. On a side note though, I am having relapses and new symptoms with no new or worsening lesions so go figure.
Corrie
I really like my neuro but he gas told me he only considers dmd to be ineffective if I have 2 major relapses in a 12-month period.
Small flares don't even get me an MRI and he said that if I only have mild flares I could go as long as 5 years between scans so he is not concerned about lesions at all.
I disagree with his logic but so far I have had a major relapse each year so I am getting scans regularly. On a side note though, I am having relapses and new symptoms with no new or worsening lesions so go figure.
Corrie
I agree with Alex and ess. If your MRI is still showing enhancing lesions then your MS IS progressing and as Alex said, " there can be no turning back".
Follow your doctor's advice and switch drugs if you have new lesions on your next MRI!
Many people are relapse free yet their MRI shows progression and they make the wise choice to switch meds. Doctor's base your MS activity on MRI results not relapses.
Good luck,
Ren
Follow your doctor's advice and switch drugs if you have new lesions on your next MRI!
Many people are relapse free yet their MRI shows progression and they make the wise choice to switch meds. Doctor's base your MS activity on MRI results not relapses.
Good luck,
Ren
Your question is clear, but I really don't agree with your rationale. You are fortunate that new lesions haven't led to relapses, of course, yet this luck is very unlikely to last. There is a lot of territory in the brain that seems to be 'silent,' considerably less so in the spinal cord. For myself, if I had a symptom or relapse for every lesion in my brain I probably wouldn't even be conscious anymore. I have enough issues as it is.
I'm at the point where my neuro is evaluating whether or not Tecfidera is working for me, and tomorrow another MRI will help answer this. I will be glad to switch to something else if need be, even though I tolerate Tec quite well. If it's not working, though, sayonara Tec.
There can be disease activity that can't be measured, for instance in the gray matter, so it doesn't show on MRI. But if it does show in the form of significant new lesions, whether or not I'm having new symptoms, that DMD is history for me. I'm not taking that chance. This is just me, but remember that not every med is beneficial for every MSer. That's one reason there are lots of choices.
ess
I'm at the point where my neuro is evaluating whether or not Tecfidera is working for me, and tomorrow another MRI will help answer this. I will be glad to switch to something else if need be, even though I tolerate Tec quite well. If it's not working, though, sayonara Tec.
There can be disease activity that can't be measured, for instance in the gray matter, so it doesn't show on MRI. But if it does show in the form of significant new lesions, whether or not I'm having new symptoms, that DMD is history for me. I'm not taking that chance. This is just me, but remember that not every med is beneficial for every MSer. That's one reason there are lots of choices.
ess
I pressed the wrong thing. I meant to reply.. Which is:
Again.. Ms I'm assuming is always progressing. The dmd I know aim to slowing the relapses. So again... If I'm relapse free, but show lesions, I should be ok to stay on them right? Lesions don't always mean progression either from what I understand. Further disability does. Which means relapses have occurred. Then I'd understand to switch drugs. But only then.
Again.. Ms I'm assuming is always progressing. The dmd I know aim to slowing the relapses. So again... If I'm relapse free, but show lesions, I should be ok to stay on them right? Lesions don't always mean progression either from what I understand. Further disability does. Which means relapses have occurred. Then I'd understand to switch drugs. But only then.
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DMDs do nothing for symptoms they simply slow the progression of MS. Some people on MS progress slowly/ Others progress more quickly.
Relapse or symptoms and lesion activity do not always go together. Some people go off DMDs because they have no new symptoms. They think they can go back on when the symptoms come back which is not a good idea. When progression happens there can be no turning back.
Alex
Alex