Aa
Time for a new med?
Hello! I'm new here. My name is Jody, I'm 45, diagnosed with MS at 24, I've been married 21 years with 2 kids and 2 Basset Hounds. :)
My question is how to know when to try a new med? The first med I took was Avonex in 2000 until 2004 then I switched to Copaxone in 2005.
My neuro thinks I should switch to one of the newer meds but to be honest I'm terrified of all the side effects. I hate being paralyzed with fear and just don't know what to do.
Can a med just stop working? Is it better to switch things up? Sorry for the ramble. I just don't know what to do!
Thanks for any input,
Jody
My question is how to know when to try a new med? The first med I took was Avonex in 2000 until 2004 then I switched to Copaxone in 2005.
My neuro thinks I should switch to one of the newer meds but to be honest I'm terrified of all the side effects. I hate being paralyzed with fear and just don't know what to do.
Can a med just stop working? Is it better to switch things up? Sorry for the ramble. I just don't know what to do!
Thanks for any input,
Jody
To make it simple, if the Copaxone is working for you, then continue. If it ain't, then it's time for another drug. I was on Copaxone for 3 years, then developed an allergic reaction to it. I went to Betaseron in 2010, and had no problems - other than forgetting to take my injection every other day. I'm not sure if I had any side effects from Betaseron, although I did experience some depression. I've been in remission since 2010, with no new lesions on my MRI as of last year.
Neuros judge whether to switch you based upon new lesion load. If you have new lesions, then it's time to think about another drug. There's side effects for each drug, so it's really all about quality of life compared to how the drug works for you.
Neuros judge whether to switch you based upon new lesion load. If you have new lesions, then it's time to think about another drug. There's side effects for each drug, so it's really all about quality of life compared to how the drug works for you.
I have been missing the past few months and especially in the last few weeks working through a research proposal that studies this very question - when and why do people switch DMTs and what might we look at that will help people BEGIN on the DMT that in probabiliy will be the most effective for that individual.
There are 12 drugs now for a reason - in addition to profits. It is known that not everyone will respond in the same way to each of these different classes of drugs. People switch therapies at a surprisingly (at least to me!) frequent rate. And they do it multiple times. There are a lot of factors that go into these moves from drug to drug.
It really isn't thought that our bodies become desensitized to a treatment, making it ineffective, but rather our systems change and no longer respond to a particular therapy.
Even on a DMT there is still the chance of relapses, and there is also the possibility that you have begun that slippery slide into secondary progressive MS which is not known to respond to the DMTs, or at least in the same say. it is so tough to say but like most everyone else here, stopping DMTs completely is a real gamble and one most of us don't want to wager on.
I know this doesn't answer the question, but I hope it gives more of an explanation. best, laura
There are 12 drugs now for a reason - in addition to profits. It is known that not everyone will respond in the same way to each of these different classes of drugs. People switch therapies at a surprisingly (at least to me!) frequent rate. And they do it multiple times. There are a lot of factors that go into these moves from drug to drug.
It really isn't thought that our bodies become desensitized to a treatment, making it ineffective, but rather our systems change and no longer respond to a particular therapy.
Even on a DMT there is still the chance of relapses, and there is also the possibility that you have begun that slippery slide into secondary progressive MS which is not known to respond to the DMTs, or at least in the same say. it is so tough to say but like most everyone else here, stopping DMTs completely is a real gamble and one most of us don't want to wager on.
I know this doesn't answer the question, but I hope it gives more of an explanation. best, laura
There is no cure for MS, only treatment.
Are you suggesting that any possible improvements via treatment should be discarded because that treatment isn't a cure?
Are you suggesting that any possible improvements via treatment should be discarded because that treatment isn't a cure?
You are entitled to your opinion, though it is not supported by scientific evidence and I disagree wholeheartedly. I find your comments questioning the integrity of many dedicated researchers and doctors extremely offensive.
ess
ess
Your link leads where?To clinical trials? These happen over the last 20 years, so? Look at the reality. I believe there are researchers, real scientists who struggle to offer. But i am disappointed, because either no one of their efforts is effective, either they reached an effective one, but we haven't seen it yet.
Or, do you mean, as i can understand, - me an illogical person as you said - , that in the future we'll have a good result of these trials? Maybe... Though i am not so optimistic whether i am alive to see it.
Or, do you mean, as i can understand, - me an illogical person as you said - , that in the future we'll have a good result of these trials? Maybe... Though i am not so optimistic whether i am alive to see it.
Your post does not make a lot of sense if I'm honest. It is difficult to understand your point other than you believe medications do not work for MS and that the neurology specialty is made up of profiteers. In light of current evidence, as opposed to anecdote, this is not a reasonable, logical position to take.
There are many, many studies being conducted related to SPMS, many of them directly pertaining to disease modification. Good quality data take time to produce, gather, interpret, act upon. https://clinicaltrials.gov/ct2/results?term=secondary+progressive&Search=Search This is just one of the points on which you seem to have an inaccurate perception.
There are many, many studies being conducted related to SPMS, many of them directly pertaining to disease modification. Good quality data take time to produce, gather, interpret, act upon. https://clinicaltrials.gov/ct2/results?term=secondary+progressive&Search=Search This is just one of the points on which you seem to have an inaccurate perception.
Hello.I take chance from your post to ask you and anybody else: Do you believe that meds help in progression of the disease? Why neurologists advertise them with so much certainty? When i see that patients, on 20 average years after the diagnosis start to have problems, how can I believe the doctors? For me, they lie!!! Foolness, interests? I don't know.
''Take meds, otherwise you'll be on a whellchair!'' Bullishits! And when i take them and after some years i face problems which lead many to the whellchair, the say: the statistics are ok, you are in the rule of 33% diminuation of relapses!!!!
jody, there is no medication at least for the time that problems come, only physio, good nutrition, vitamins and psycology.Don't expect anything else. You are lucky, you will have a good course, you are unlucky, bad for you. Don't expect anything from neuros. They exist or not, the same thing.Sorry to tell.It's my conclusion from what i read and hear.Is there any mediction for secondary progressive??? NO.That's the real ms and there is no help from science - in the real problem.
Gilenya, tecfidera...... 33% less relapses. WOW!!!!!!!! REAL THERAPIE!!! REVOLUTION TO THE MS!!!!!And people are getting worse over the years...Someone has to think seriously of strting sueing them for lying and cheating on people's suffering.
''Take meds, otherwise you'll be on a whellchair!'' Bullishits! And when i take them and after some years i face problems which lead many to the whellchair, the say: the statistics are ok, you are in the rule of 33% diminuation of relapses!!!!
jody, there is no medication at least for the time that problems come, only physio, good nutrition, vitamins and psycology.Don't expect anything else. You are lucky, you will have a good course, you are unlucky, bad for you. Don't expect anything from neuros. They exist or not, the same thing.Sorry to tell.It's my conclusion from what i read and hear.Is there any mediction for secondary progressive??? NO.That's the real ms and there is no help from science - in the real problem.
Gilenya, tecfidera...... 33% less relapses. WOW!!!!!!!! REAL THERAPIE!!! REVOLUTION TO THE MS!!!!!And people are getting worse over the years...Someone has to think seriously of strting sueing them for lying and cheating on people's suffering.
Thank you for the replies!
I've been on Copaxone since 2005 with the only change being switching from the daily injection to the 3 days per week injections.
My MRI's show no new or active lesions which is great and there have been many improvements over the past 10 years such has no longer needing daily provigil to function due to severe fatigue, no longer needing migraine meds, vision improvements and the bonus of going from being almost chronically sick to never being sick. I haven't had so much as a cold since starting Copaxone, not even allergies which I've suffered from since childhood.
Then this crumpling started July of 2013.
So, relapse? Getting worse with improvements? I don't know. Sigh... what to do what to do?
Best to all,
Jody
I've been on Copaxone since 2005 with the only change being switching from the daily injection to the 3 days per week injections.
My MRI's show no new or active lesions which is great and there have been many improvements over the past 10 years such has no longer needing daily provigil to function due to severe fatigue, no longer needing migraine meds, vision improvements and the bonus of going from being almost chronically sick to never being sick. I haven't had so much as a cold since starting Copaxone, not even allergies which I've suffered from since childhood.
Then this crumpling started July of 2013.
So, relapse? Getting worse with improvements? I don't know. Sigh... what to do what to do?
Best to all,
Jody
Not everyone gets the side effects. They have to list all the side effects people got in the studies. Many people are on the new drugs and doing fine. When MS gets more aggressive you have to take more risks with medication. It is always Benefit/risk with all medications.
Alex
Alex
Hi Jody-
Yes, DMD's can stop working. And in my mind that is the main reason to switch. I'm not sure I would risk switching an injectable that works for an oral that might not. I started on Tysabri and after 20 months it stopped working. I switched to Rituxan. Than was nearly 2 years ago. So far, so good :-)
Kyle
Yes, DMD's can stop working. And in my mind that is the main reason to switch. I'm not sure I would risk switching an injectable that works for an oral that might not. I started on Tysabri and after 20 months it stopped working. I switched to Rituxan. Than was nearly 2 years ago. So far, so good :-)
Kyle
Hi Jody and welcome to the group!
After a year of Rebif I switched to oral (Tecfidera) but it was due to arm issues and reaching enough injection sites.
The oral meds are newer and do have stronger side effects, at least in my experience. I know that DMDs can cause antibodies rendering it less effective in your system but I do not know at what point that happens or if there is testing that can corroborate that.
Are you having relapses still with Copaxone? If your relapses are still happening or worse than usual it may be time to consider another drug but if that is not the case, I am not sure there is a reason to switch unless you are developing antibodies rendering Copaxone less effective.
Hopefully others will chime in soon,
Corrie
After a year of Rebif I switched to oral (Tecfidera) but it was due to arm issues and reaching enough injection sites.
The oral meds are newer and do have stronger side effects, at least in my experience. I know that DMDs can cause antibodies rendering it less effective in your system but I do not know at what point that happens or if there is testing that can corroborate that.
Are you having relapses still with Copaxone? If your relapses are still happening or worse than usual it may be time to consider another drug but if that is not the case, I am not sure there is a reason to switch unless you are developing antibodies rendering Copaxone less effective.
Hopefully others will chime in soon,
Corrie
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