Aa
Diagnosed! What about vitamin D?
I was diagnosed on Wednesday after all my testing was completed. I only had a four month wait for a diagnosis so I consider myself extremely lucky.
At this point I have decided not to be medicated ( although this may change in the very near future) as I still want to do my research on the medication and decide once that is completed.
I know people who believe the medication is very helpful and others that feel it was a waste of money and treatment as they feel it was not helpful .
Anyway ...I'd like to know how many of you were advised to take Vitamin D and how much you take daily.
Thank you
At this point I have decided not to be medicated ( although this may change in the very near future) as I still want to do my research on the medication and decide once that is completed.
I know people who believe the medication is very helpful and others that feel it was a waste of money and treatment as they feel it was not helpful .
Anyway ...I'd like to know how many of you were advised to take Vitamin D and how much you take daily.
Thank you
"As far as I know my blood work was all normal....."
Assume nothing. Get copies of everything.
Assume nothing. Get copies of everything.
I take 10,000 iu of D3 daily. I was severely deficient when I was dx'ed in 2007. I'm now in optimal range and and am tested periodically. I'm actually quite encouraged by the early studies. Attached is a thorough overview re: vitamin D and MS, developed by University of Calgary researchers. Pages 42-43 outline an interesting study currently underway led by my new neuro whom I will meet in a couple of months.
http://mssociety.ca/alberta/pdf/MS%20Connections%20Conference/Presentations/Dr.Myles-Shining_a_Light_on_VitaminD&MS.pdf
http://mssociety.ca/alberta/pdf/MS%20Connections%20Conference/Presentations/Dr.Myles-Shining_a_Light_on_VitaminD&MS.pdf
They sell Vit D sprays too which are excellent. One squirt of mild mint under the tongue, hold for a couple of seconds and job done.
As you say it's cheap and whilst there isn't anything definite in the research yet, this vitamin is needed for every cell to do its job properly. I for one am not taking any more chances, levels would need to be really high to do any harm.
Got my Neuro appt 16th May ... ages then. Will hopefully be put on Tec, but as per my original post above, looks likely it'll be on a waiting list due to delivery issues to people's homes. Will def ask about alternative - like collecting it myself!
As you say it's cheap and whilst there isn't anything definite in the research yet, this vitamin is needed for every cell to do its job properly. I for one am not taking any more chances, levels would need to be really high to do any harm.
Got my Neuro appt 16th May ... ages then. Will hopefully be put on Tec, but as per my original post above, looks likely it'll be on a waiting list due to delivery issues to people's homes. Will def ask about alternative - like collecting it myself!
I've looked at the Nat'l MS Society site and found quite a few references to D. There are links to ongoing and completed research studies, and there is also
Vitamin D and MS: Implications for Clinical Practice
A Clinical Bulletin from the Professional Resource Center
of the National Multiple Sclerosis Society
This bulletin does not really answer many questions about prescribing D for those already diagnosed with MS. It lists pros and cons, including costs, and refers to research seeming to show that D plays a role in the course of MS, possibly promoting fewer and milder relapses. Nothing thus far is very clear, however. So the NMSS' take on whether D should be ordered for MSers: probably.
Not exactly a ringing endorsement, is it? Still, Vitamin D is cheap, readily available without prescription, and taken at reasonable levels will do no harm. I pop enough pills every morning as it is, so staying with D while reading up on developments as they occur seems a good idea for me.
ess
Vitamin D and MS: Implications for Clinical Practice
A Clinical Bulletin from the Professional Resource Center
of the National Multiple Sclerosis Society
This bulletin does not really answer many questions about prescribing D for those already diagnosed with MS. It lists pros and cons, including costs, and refers to research seeming to show that D plays a role in the course of MS, possibly promoting fewer and milder relapses. Nothing thus far is very clear, however. So the NMSS' take on whether D should be ordered for MSers: probably.
Not exactly a ringing endorsement, is it? Still, Vitamin D is cheap, readily available without prescription, and taken at reasonable levels will do no harm. I pop enough pills every morning as it is, so staying with D while reading up on developments as they occur seems a good idea for me.
ess
I'm currently in a Vitamin D research study through my teaching hospital. My levels (and life history) were taken when I was diagnosed with CIS and have continued to be monitored.
To be honest, the impression I get from my discussions with the researchers is it's currently VERY early days, it's unknown vitamin D's role or even if it has one, levels prescribed are complete guess work, and the jury is still very much out. I've never been told to supplement, my childhood on the 35º N (that's equivalent to North Africa) was more then full of sunshine, yet I was diagnosed at 30, at the dead centre bullseye for 'typical' diagnosis age.
Obviously if someone's levels are low even outside of an MS context, it's understandable that a medical professional will recommend supplementation. But the word for everything I've looked into regarding my need to do anything in terms of MS/Vitamin D? Unimpressive.
Something else to consider, RDA and ideal 'levels' ever-shifting goalposts. The area of nutrition may as well be new territory from a medical and scientific standpoint. As evidence helps bring things into focus, recommendations change. But there's so little focus at present that it's difficult and confusing to make prudent decisions. The fact that Big Suppliment is the utter Wild West in terms of regulation means my eye is pretty jaundiced in this respect.
To be honest, the impression I get from my discussions with the researchers is it's currently VERY early days, it's unknown vitamin D's role or even if it has one, levels prescribed are complete guess work, and the jury is still very much out. I've never been told to supplement, my childhood on the 35º N (that's equivalent to North Africa) was more then full of sunshine, yet I was diagnosed at 30, at the dead centre bullseye for 'typical' diagnosis age.
Obviously if someone's levels are low even outside of an MS context, it's understandable that a medical professional will recommend supplementation. But the word for everything I've looked into regarding my need to do anything in terms of MS/Vitamin D? Unimpressive.
Something else to consider, RDA and ideal 'levels' ever-shifting goalposts. The area of nutrition may as well be new territory from a medical and scientific standpoint. As evidence helps bring things into focus, recommendations change. But there's so little focus at present that it's difficult and confusing to make prudent decisions. The fact that Big Suppliment is the utter Wild West in terms of regulation means my eye is pretty jaundiced in this respect.
The question of what help Vitamin D is in MS is a good one, and one I plan to ask at my next MS appointment. I have read that low D is associated with the onset of the disease, yet as with everything else about MS, it doesn't apply to everyone.
While I was being tested for MS, my D level was adequate, in the 40s, I think, but I was still told to take more. There were a lot of other more pressing issues and questions at that time, so I didn't pursue this but started taking 2000 units daily, and that was in 2006. Last time I had this measured it was up to 84. I want to know what good this is doing, if any, and what the upper safe limit is.
ess
While I was being tested for MS, my D level was adequate, in the 40s, I think, but I was still told to take more. There were a lot of other more pressing issues and questions at that time, so I didn't pursue this but started taking 2000 units daily, and that was in 2006. Last time I had this measured it was up to 84. I want to know what good this is doing, if any, and what the upper safe limit is.
ess
I don't know...everything I'VE read says over 100 is toxic territory. I would be a bit hesitant to get it OVER 100. Up high, but over? Best to err on the side of caution, especially since they rarely see people with levels that high - I'm not even sure they have that much good data about what that level would mean long term, especially since so many people are low all the time. My neuro wants to see me at 70, which kinda shows that there is no real consensus on what is high enough, or too high. Since vit D deficiency doesn't cause MS, I'd be wary of getting the idea that every increment of more, is better or is going to be more efficacious at reducing relapses.
If you're anything like me you're not going to come up that fast anyway. I'm still working on it: it took me 2 months of more than what you say you'll be taking (60-70,000 of D3 weekly), to get my level from 13 to 28, and another 2 to get to 42, which was where I was about 3 weeks ago, so speedy is not necessarily in the cards. Coming up from rickets level is going to be a long haul I'm thinking.
As for the Tec, that reasoning they're giving you for delay sounds really odd, and not quite right, honestly. I got mine in record time - it was approved, and on its way to me in mere days. I started in late December of last year, so shortages? uh....
Maybe your doc's office doesn't have a good process in place to get that stuff through, because mine was lightning fast - it involved a drug rep as I recall. I filled out some Biogen Idec paperwork, and the doc and THEY dealt with the insurance company. Very streamlined for such a pricey drug. I was pretty amazed. In any case, I'd be pushing back to the doc and saying, "Hey, you mean you're going to leave me to just lesion up for 3 more months with no med?" I just can't help thinking that shortages are not a problem and that something else is in play here....just my 2 cents.
On the plus side for Tec, I've had minimal side effects overall since starting. I hope you can get on it sooner rather than later and that you have as low a level of side effects that I've had so far.
Good luck with the D and the process! And glad that you didn't have to linger in limbo too long like some. :)
Karen
If you're anything like me you're not going to come up that fast anyway. I'm still working on it: it took me 2 months of more than what you say you'll be taking (60-70,000 of D3 weekly), to get my level from 13 to 28, and another 2 to get to 42, which was where I was about 3 weeks ago, so speedy is not necessarily in the cards. Coming up from rickets level is going to be a long haul I'm thinking.
As for the Tec, that reasoning they're giving you for delay sounds really odd, and not quite right, honestly. I got mine in record time - it was approved, and on its way to me in mere days. I started in late December of last year, so shortages? uh....
Maybe your doc's office doesn't have a good process in place to get that stuff through, because mine was lightning fast - it involved a drug rep as I recall. I filled out some Biogen Idec paperwork, and the doc and THEY dealt with the insurance company. Very streamlined for such a pricey drug. I was pretty amazed. In any case, I'd be pushing back to the doc and saying, "Hey, you mean you're going to leave me to just lesion up for 3 more months with no med?" I just can't help thinking that shortages are not a problem and that something else is in play here....just my 2 cents.
On the plus side for Tec, I've had minimal side effects overall since starting. I hope you can get on it sooner rather than later and that you have as low a level of side effects that I've had so far.
Good luck with the D and the process! And glad that you didn't have to linger in limbo too long like some. :)
Karen
Hi, I was dx on Feb 28th this year after a speedy set of events (won't go into all that as have posted before!).
Anyway, both my Ophthamologist (Optic Neuritis final dx) and Neurologist have both said Vit D - mine was low and borderline into rickets territory. I'm on an 8 week high dose treatment of 40,000 per week taken in two doses few days apart. Although normal level is over 50, I've been advised to get to well over 100.
I've read conflicting reports about whether low Vit D helps MS to get hold or whether MS depletes your Vit D which is trying to help your cells work properly. Either way being at a high level is recommended. I am on a prescription dose but you can buy high dose at the health shop and take double etc.
There seems to be a lot of research into this.
Immediately after dx I was on 500mg MethylPredisilone as brain lesions were active and new ones appearing in space of two weeks.
I also had my first MS Nurse appt today, she has said it'll prob be another 6-8 weeks before I see my Neuro again - so 3 months since dx!
She said they would try to get me on the Tecfidera but that there was a waiting list and 2-3 mth delay even when agreed at Neuro appt due to logistical problems with deliveries - I mean come on, I'd drive to pick it up!! So could be 6 mths from dx before I get any treatment, so much for starting something ASAP then!
Anyway, minor rant over, all advice and info I've seen says to get on DMDs sooner rather than later and in early stages if poss to get best outcome. Prob should factor that in to any decision you make, after all your next lesion might not be as 'kind' as the ones you have now. (Use kind in loose terms!).
Anyway, both my Ophthamologist (Optic Neuritis final dx) and Neurologist have both said Vit D - mine was low and borderline into rickets territory. I'm on an 8 week high dose treatment of 40,000 per week taken in two doses few days apart. Although normal level is over 50, I've been advised to get to well over 100.
I've read conflicting reports about whether low Vit D helps MS to get hold or whether MS depletes your Vit D which is trying to help your cells work properly. Either way being at a high level is recommended. I am on a prescription dose but you can buy high dose at the health shop and take double etc.
There seems to be a lot of research into this.
Immediately after dx I was on 500mg MethylPredisilone as brain lesions were active and new ones appearing in space of two weeks.
I also had my first MS Nurse appt today, she has said it'll prob be another 6-8 weeks before I see my Neuro again - so 3 months since dx!
She said they would try to get me on the Tecfidera but that there was a waiting list and 2-3 mth delay even when agreed at Neuro appt due to logistical problems with deliveries - I mean come on, I'd drive to pick it up!! So could be 6 mths from dx before I get any treatment, so much for starting something ASAP then!
Anyway, minor rant over, all advice and info I've seen says to get on DMDs sooner rather than later and in early stages if poss to get best outcome. Prob should factor that in to any decision you make, after all your next lesion might not be as 'kind' as the ones you have now. (Use kind in loose terms!).
Thank you...very helpful... I really appreciate the feedback from others who are going through this as well.
The medication is something I need to come to terms with so finding one I'm comfortable with is where I'm at..the side effects scare the witts out of me...
The medication is something I need to come to terms with so finding one I'm comfortable with is where I'm at..the side effects scare the witts out of me...
Hi. Another of the recently, and quickly (thank goodness!) diagnosed here. I was tested as part of the dx process, and my D level was "profoundly" low - 13 in fact. I was advised to take 2000 per day and given a script for D2. I didn't fill the script, but went to the store and got a good quality D3, which is supposed to be better absorbed, and started taking 5000IUs per day. Then, again on my own, I started taking about 7-9000 per day.
In about 8 weeks, it had only come up to 28. Continued taking it at that level, and my last test was 43. My doc was pleased with what I was taking on my own, and said that 43 was technically in the "adequate" range. However, he wants me at 70. I know, it sounds insane, but apparently there is evidence that first year relapses are fewer and less severe in people whose D levels are higher, so I'm on board for this. I will have it tested this next week, so we'll see what the level is right now. It doesn't shoot up fast, so I don't feel that I'm taking anything dangerous. As I get closer to target, and I get more sun, I will back off the high dose, but for now...
As for the med, yes, choosing one - or not - is a difficult process, and also depends on how aggressive your disease course is. I am assuming you're younger than I. I was diagnosed last year, basically at age 52, and my history means that I've likely had MS for about 10 years already, I just didn't know the relatively mild sensory symptoms I was having were MS related. I'm still not sure they were/are, but the neuro seemed to think so, so here I am.
Anyway, as I said, the type and aggressiveness of your symptoms and how fast you are having nerve damage, should drive what kind of med you and your doctor decide on. My neuro and I went over the entire list of them (I confess I don't recall details on all) but his comment to me was, had I been experiencing mostly optic neuritis and sensory symptoms, he might prescribe copaxone first, but...since I presented with motor and coordination symptoms, he would suggest some of the stronger ones, like Gilenya or Tecfidera. (Yes, I wanted to do almost anything other than needles too, I confess. I'll cross that bridge only when I have to.)
He also told me about the good and bad of each one, as well as the big bad boy, Tysabri. Other than the stated reason for suggesting the ones he did, I also suspect that he did not tell me what I already knew: onset over 50, and first presentation with motor symptoms, are not good signs for a mild or slow course of the disease. There is no point in me being on a less effective med, when it is likely I will need something stronger, considering the factors I mentioned.
I am currently taking Tecfidera, and as MS drug side effects go, it has not been bad at all. The first month was a bit adventurous, with lovely bouts of a nausea I've never experienced: nauseated, stomach cramps, but the sight or thought of food doesn't make you want to throw up. Very weird. But a nice script for Zofran put paid to that. The other side effect was flushing - which was (and is, it's still doing it) random but mostly mild and transient. It feels all hot and prickly and almost itchy for about 30 minutes - face, arms, sometimes shins, then it's gone. Not too hard to deal with. No other symptoms. And my last bloodwork came back good.
Anyway, definitely take that D and get your level up as quickly as possible, and I understand the trepidations about the meds, believe me, we all do. But if there is even a chance I can slow down the farging bastage that is MS I will. It's already impacting my life WAY too much and I have the supposedly airy-fairy you-can-still-climb-a-mountain RRSM. Don't be fooled by the "remitting" moniker. I've had a first attack and one relapse, and I can say with certainty now, for some of us, remission is not all it's cracked up to be by the brave picture the MS world tries to present to the outside. Even now, in the early stages (since formal diagnosis), I've lost quite a bit and had my quality of life noticeably impacted in several ways.
Good luck in deciding, I know it's a BIG deal.
Karen
In about 8 weeks, it had only come up to 28. Continued taking it at that level, and my last test was 43. My doc was pleased with what I was taking on my own, and said that 43 was technically in the "adequate" range. However, he wants me at 70. I know, it sounds insane, but apparently there is evidence that first year relapses are fewer and less severe in people whose D levels are higher, so I'm on board for this. I will have it tested this next week, so we'll see what the level is right now. It doesn't shoot up fast, so I don't feel that I'm taking anything dangerous. As I get closer to target, and I get more sun, I will back off the high dose, but for now...
As for the med, yes, choosing one - or not - is a difficult process, and also depends on how aggressive your disease course is. I am assuming you're younger than I. I was diagnosed last year, basically at age 52, and my history means that I've likely had MS for about 10 years already, I just didn't know the relatively mild sensory symptoms I was having were MS related. I'm still not sure they were/are, but the neuro seemed to think so, so here I am.
Anyway, as I said, the type and aggressiveness of your symptoms and how fast you are having nerve damage, should drive what kind of med you and your doctor decide on. My neuro and I went over the entire list of them (I confess I don't recall details on all) but his comment to me was, had I been experiencing mostly optic neuritis and sensory symptoms, he might prescribe copaxone first, but...since I presented with motor and coordination symptoms, he would suggest some of the stronger ones, like Gilenya or Tecfidera. (Yes, I wanted to do almost anything other than needles too, I confess. I'll cross that bridge only when I have to.)
He also told me about the good and bad of each one, as well as the big bad boy, Tysabri. Other than the stated reason for suggesting the ones he did, I also suspect that he did not tell me what I already knew: onset over 50, and first presentation with motor symptoms, are not good signs for a mild or slow course of the disease. There is no point in me being on a less effective med, when it is likely I will need something stronger, considering the factors I mentioned.
I am currently taking Tecfidera, and as MS drug side effects go, it has not been bad at all. The first month was a bit adventurous, with lovely bouts of a nausea I've never experienced: nauseated, stomach cramps, but the sight or thought of food doesn't make you want to throw up. Very weird. But a nice script for Zofran put paid to that. The other side effect was flushing - which was (and is, it's still doing it) random but mostly mild and transient. It feels all hot and prickly and almost itchy for about 30 minutes - face, arms, sometimes shins, then it's gone. Not too hard to deal with. No other symptoms. And my last bloodwork came back good.
Anyway, definitely take that D and get your level up as quickly as possible, and I understand the trepidations about the meds, believe me, we all do. But if there is even a chance I can slow down the farging bastage that is MS I will. It's already impacting my life WAY too much and I have the supposedly airy-fairy you-can-still-climb-a-mountain RRSM. Don't be fooled by the "remitting" moniker. I've had a first attack and one relapse, and I can say with certainty now, for some of us, remission is not all it's cracked up to be by the brave picture the MS world tries to present to the outside. Even now, in the early stages (since formal diagnosis), I've lost quite a bit and had my quality of life noticeably impacted in several ways.
Good luck in deciding, I know it's a BIG deal.
Karen
Hi, I haven't been tested but my neuro recommended 2000 iu a day to help prevent neurological diseases like Alzheimers. Said he takes it himself.
My local MS society said 4000 so who knows?
Corrie
My local MS society said 4000 so who knows?
Corrie
Thank you....As far as I know my blood work was all normal so I'm not sure I'm lacking any but I was still advised to take 4000 is that normal?
Just before my diagnosis I had blood taken and tested. The results came back showing I had no vitamin D in my system
My doc said she had never seen that before. She put me on 2000 of vitamin D. When I told this to my neurologist she said that dose was not high enough. She told me to take 4000 a day.
My doc said she had never seen that before. She put me on 2000 of vitamin D. When I told this to my neurologist she said that dose was not high enough. She told me to take 4000 a day.
Thank you and yes I was advised to take 4000IU a day if vitamin D that's why I'm asking...
as far as the medication goes I'm aware that the sooner. they are taken the better...Im just getting information in each before I make a decision.. I personally would like to take the least potent at this point and want to read up to find out what ones this would be...
Thanks
as far as the medication goes I'm aware that the sooner. they are taken the better...Im just getting information in each before I make a decision.. I personally would like to take the least potent at this point and want to read up to find out what ones this would be...
Thanks
I had one neurologist who put all his MS patients on high vitamin D. My one now says it is expensive urine. He suggests getting it tested if it is low than take it it.
Everything I have read says a vitamin D deficency may cause MS but once you have it taking vitamin D does no real good except for other health concerns.
As far as the Disease Modifying Drugs if you are waiting until your MS to get worse to try them than they will not reverse the damage. They will slow any further damage. Nerve damage can happen with out symptoms. They work best when you first have MS. As MS goes on you have to go to more potent ones like Tysabri.
Alex
Everything I have read says a vitamin D deficency may cause MS but once you have it taking vitamin D does no real good except for other health concerns.
As far as the Disease Modifying Drugs if you are waiting until your MS to get worse to try them than they will not reverse the damage. They will slow any further damage. Nerve damage can happen with out symptoms. They work best when you first have MS. As MS goes on you have to go to more potent ones like Tysabri.
Alex
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