Aa
Anyone decide to postpone taking the meds?
I am wondering, has anyone on here waited any length of time following their diagnosis to start with meds? It seems like everyone is stressing the importance of early treatment, but the odds in our favor are still only 30% reduction in relapse / progression, not a terribly convincing number. If there is a particular study that shows solid proof of the benefits of early tx vs waiting, I would love to be directed to it. Also I would like if anyone who postponed the meds could share their story with me.
Hi,
I did wait ( or the Dr's waited) for 4 years . I am a 56 year old female.
They did not want me on DMD"S because they said it would not help me, because I have depression too. Apparently, after 4 years though, I did try Copaxone, was on that for 1 1/2 years, then a Neuro from UBC in Vancouver told me to stop taking it because it was damaging my skin in all the injection sites.
Then, we tried Avonex , another injection, and after 5 months went off that, because of the side effects.
Then this last June, we started the pill AUBAGIO, and after 2 1/2 months had to get off this one too, because I was terribly allergic, hives, and such on my face/throat, and it got into my mouth. so spent 4 hours in the emergency room.... and we had a family meeting and decided to go off this one too.
I am still taking the original med's , the baclofen, gabapentin, anti-depressants, and Zoplicone to sleep, also have some med's when the anxiety gets bad, and I have panic attacks too.
I have been trying for a few months to get answers from the MS Clinic, to see if they would give me more options, but our MS Clinic is not good, and we have not been on a DMD now for a month or so.
It is also like people have said, a personal decision. I tried because I said " what do we have to lose" , well, sometimes quite a bit. But, they are there for us to try, and I am hoping you will find something to help you.....
Good luck, and be kind to yourself,
Candy
I did wait ( or the Dr's waited) for 4 years . I am a 56 year old female.
They did not want me on DMD"S because they said it would not help me, because I have depression too. Apparently, after 4 years though, I did try Copaxone, was on that for 1 1/2 years, then a Neuro from UBC in Vancouver told me to stop taking it because it was damaging my skin in all the injection sites.
Then, we tried Avonex , another injection, and after 5 months went off that, because of the side effects.
Then this last June, we started the pill AUBAGIO, and after 2 1/2 months had to get off this one too, because I was terribly allergic, hives, and such on my face/throat, and it got into my mouth. so spent 4 hours in the emergency room.... and we had a family meeting and decided to go off this one too.
I am still taking the original med's , the baclofen, gabapentin, anti-depressants, and Zoplicone to sleep, also have some med's when the anxiety gets bad, and I have panic attacks too.
I have been trying for a few months to get answers from the MS Clinic, to see if they would give me more options, but our MS Clinic is not good, and we have not been on a DMD now for a month or so.
It is also like people have said, a personal decision. I tried because I said " what do we have to lose" , well, sometimes quite a bit. But, they are there for us to try, and I am hoping you will find something to help you.....
Good luck, and be kind to yourself,
Candy
Just a comment here--
The 30% figure does not mean that a given individual will have 30% fewer relapses than he or she would otherwise have. Who knows how many/what type anyone will experience? Crystal balls have their limitations, after all.
What it does mean is that in trials of large numbers of MS patients (large here means satisfying reasonable scientific inquiry), the number of relapses experienced was 30% fewer than a large group of untreated MSers would be expected to have. These relapses could include mild and relatively transient symptoms, up to permanent blindness or paralysis. Not fun things to consider, are they?
There are now at least 10 MS disease-modifying treatments available in the US. (Lemtrada has just been added.) Several of these are in pill form. If one seems intolerable there are loads of others to try. Given all that, I can't imagine why someone would take the risk of serious disability when there are options out there.
However, people can be unfathomable. Sometimes the immortality fantasy of youth is at work. Often these are the same people trying dangerous recreational drugs or smoking like a chimney in college. I hope such folks wake up in time.
ess
The 30% figure does not mean that a given individual will have 30% fewer relapses than he or she would otherwise have. Who knows how many/what type anyone will experience? Crystal balls have their limitations, after all.
What it does mean is that in trials of large numbers of MS patients (large here means satisfying reasonable scientific inquiry), the number of relapses experienced was 30% fewer than a large group of untreated MSers would be expected to have. These relapses could include mild and relatively transient symptoms, up to permanent blindness or paralysis. Not fun things to consider, are they?
There are now at least 10 MS disease-modifying treatments available in the US. (Lemtrada has just been added.) Several of these are in pill form. If one seems intolerable there are loads of others to try. Given all that, I can't imagine why someone would take the risk of serious disability when there are options out there.
However, people can be unfathomable. Sometimes the immortality fantasy of youth is at work. Often these are the same people trying dangerous recreational drugs or smoking like a chimney in college. I hope such folks wake up in time.
ess
Hi AB - Welcome to the group.
It would make more sense to me if the Qustion was whether to take DMDs alt all, or not. To postpone would not seem a reasonable alternative. Postponing would imply that you are going to take them at some point. If that's the case, why would you delay? There is no benefit, only downside.
If you are questioning the use of DMD's entirely, we must all make our own decisions. MS is a progressive disease. DOM'dd seek to slow the progression, not eliminate it. If thre is a 30% chance that I can slow down the progression of my MS, I'll take it. THe drugs available today have pretty good safety records, understanding that no drug is without its risks. SO the risk/reward profile would seem to support DMD use.
Fo me, by the time I was diagnosed I was beyond the reach of the first lined meds. I went right to Tysabri, without hesitation and without any side effects. After 20 months Tysabri was no longer effective for me. Rituxan was (is) next, agaon without hesitation or ill effect.
Just one man's opinion :-)
Kyle
It would make more sense to me if the Qustion was whether to take DMDs alt all, or not. To postpone would not seem a reasonable alternative. Postponing would imply that you are going to take them at some point. If that's the case, why would you delay? There is no benefit, only downside.
If you are questioning the use of DMD's entirely, we must all make our own decisions. MS is a progressive disease. DOM'dd seek to slow the progression, not eliminate it. If thre is a 30% chance that I can slow down the progression of my MS, I'll take it. THe drugs available today have pretty good safety records, understanding that no drug is without its risks. SO the risk/reward profile would seem to support DMD use.
Fo me, by the time I was diagnosed I was beyond the reach of the first lined meds. I went right to Tysabri, without hesitation and without any side effects. After 20 months Tysabri was no longer effective for me. Rituxan was (is) next, agaon without hesitation or ill effect.
Just one man's opinion :-)
Kyle
I have but I understand progression can take place with or with out symptoms. There is no turning back progression. You have to be okay if you end up with damage to accept it and not think what if I had taken the drugs to slow progression.
Alex
Alex
The decision to take medications is a very personal one, and usually the result of many factors.
Study investigating use of interferon to stave off conversion of CIS to MS. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(00)04725-5/fulltext
Early treatment versus delayed treatment http://www.sciencedirect.com/science/article/pii/S0140673607611945
Long-term treatment started early http://www.sciencedirect.com/science/article/pii/S1474442209702376
(funded by a pharmaceutical)
Rationale for early treatment
http://msj.sagepub.com/content/8/1/2.short
These are just me looking by googling "early treatment multiple sclerosis". No weasel words such as "positive" or "support for". I believe they only take into account injectable interferons, which are only about three of the current 10 or so medication options (some of which come with 40-50% reduction rates).
When weighed against the very good safety record of the drugs with the 30% reduction rate, one man's 'not a terribly convincing number' is another's 'no-brainer'. Is it outstanding compared to 100%? Perhaps not. Are pharmaceutical companies squeaky clean? Nope. But that 30% is the difference between the MS of old and the prognosis most of us have now.
Study investigating use of interferon to stave off conversion of CIS to MS. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(00)04725-5/fulltext
Early treatment versus delayed treatment http://www.sciencedirect.com/science/article/pii/S0140673607611945
Long-term treatment started early http://www.sciencedirect.com/science/article/pii/S1474442209702376
(funded by a pharmaceutical)
Rationale for early treatment
http://msj.sagepub.com/content/8/1/2.short
These are just me looking by googling "early treatment multiple sclerosis". No weasel words such as "positive" or "support for". I believe they only take into account injectable interferons, which are only about three of the current 10 or so medication options (some of which come with 40-50% reduction rates).
When weighed against the very good safety record of the drugs with the 30% reduction rate, one man's 'not a terribly convincing number' is another's 'no-brainer'. Is it outstanding compared to 100%? Perhaps not. Are pharmaceutical companies squeaky clean? Nope. But that 30% is the difference between the MS of old and the prognosis most of us have now.
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
