Going to try Copaxone

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Going to try Copaxone

Postby CVfactor » Wed Feb 08, 2012 4:32 pm

I have been on really high dose Vitamin D and just had a bad bout of double vision and prior to that Lhermites sign.

I was on taking 40,000IU/day because in recent phase I trials this is the maximum dose that subjects were given. Ive been on this dosage for a little over a year and it is not working for me.

It appears that vitamin D can induce adaptive regulatory T cells which seem to act on areas of inflamation once it has begun, but does not seem to prevent inflamation.

But I have been reading a lot about Copaxone which seems to promote the natural regulatory Tcell that expresses FOXP3 which is believed to prevent inflamation in the first place. So this is the next logical step for me.

http://www.fasebj.org/content/22/10/3500.full

It may be that Vitamin D may play a role in preventing people from getting MS, but in my case it didnt prevent relapses from occuring. I am going to bring my Vitamin D level back to what is reccommended for good immune health (150 nmol/L) and give Copaxone a try.
Last edited by CVfactor on Thu Feb 09, 2012 10:15 am, edited 1 time in total.
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Re: Going to try Copaxone

Postby patticake66 » Thu Feb 09, 2012 6:05 am

CVFactor...please tell me you made a mistake and you are not taking 40,000 iu daily....you are going to harm yourself. Who would prescribe such a daily dose?
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Re: Going to try Copaxone

Postby CVfactor » Thu Feb 09, 2012 8:14 am

Patticake66,

Yes, I have been on 40,000 IU unit/day for over a year and tolerated it very well. I didn't have any relapses until I started to reduce the dosage to 30,000 IU/day which is when I began having these issues. This could be a coincidence and maybe not.

But I would agree that taking this much Vitamin D is not reccommended by anyone in the medical comunity. However, if you read the data published on what the upper level of Vitamin D is that cause hypercalcemia it seems that the dosage would be much greater than 40,000 IU/day.

Incidentally, here is a Phase I study in which people were put on an escalating dose of Vitamin D to a maximum level of 40,000 IU/day with an average of 15,000 IU/day for a year:

http://www.ncbi.nlm.nih.gov/pubmed/20427749

There was no evidence of hypercalcemia or any ill effects due to vitamin D.

Likewise, here is another Phase I trial of high dose vitamin D (20,000 IU/day for 12 weeks):

http://www.ncbi.nlm.nih.gov/pubmed/21179201

Again, no indication of hypercalcemia or any ill effects due to Vitamin D.

Here is a good video presentation of Vitamin D and toxicity by Dr. Reihold Vieth who is a leading scientist on Vitamin D:

http://youtu.be/MIDWA9-cGdY

In this video he describe a case of a man who was poisoned by his wife with 1.7million IU/day for 7 months. The man survived and is fine.

Finally, here is a review of the safety of vitamin D by looking at all known past cases of people who have taken massive doses of vitamin D by accident:

http://www.grc.com/health/pdf/Vitamin_D_Supplementation_25-hydroxy_D_concentrations_and_safety.pdf

Image

So, you can see from the chart above, it takes a lot of vitamin D supplementation over a long duration of time before you start experiencing negative effects.

All of the reports of vitamin D toxicity showing the convincing evidence of hypercalcemia involve serum 25(OH)D concentrations well above 200
nmol/L (Table 5), which requires a daily intake of ³1000 mg (40 000 IU), and which could thus be conservatively considered the LOAEL (Lowest Observed Adverse Effect Level).


So, there really is no evidence that this level of Vitamin D is going to cause any adverse effects. Because of this, I was willing to give it a try to see if it helped me.

Incidentally, the Institutes of Medicine recommends the daily intake should be 600IU/day. This is reccomendation and all of the previous reccomendations are only to prevent rickets and it probaly dooms a lot of people to become afflicted with MS in the first place.

http://www.grassrootshealth.org/_download/scientists'%20letter%20050508.pdf
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Re: Going to try Copaxone

Postby Sarahebeth » Thu Feb 09, 2012 10:32 am

40,000? I was told that over 4,000 was considered toxic? I take 2,000 per my doctor's suggestion.

I have also been on copaxone for 4 months.
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Re: Going to try Copaxone

Postby CVfactor » Thu Feb 09, 2012 11:41 am

It was not too long ago that the Institutes of Medicine considered 2000 IU/day as toxic.

But I am not recommending that anyone take 40,000 IU/day, this is what I was taking which is based on the evidence available on
the toxicity.

A lot people who look at the data are comming to the same conclusion:

http://youtu.be/k-sGrBE_n5c

I would say you would definetely be safe with 2000IU/day. But I would ask you to tell your doctor to give you the evidence that 4,000 IU/day is toxic and share it with the rest of us.
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Re: Going to try Copaxone

Postby LR1234 » Thu Feb 09, 2012 4:52 pm

5000iu a day too me into the high levels of Vitamin D3 on my blood tests. Have to you had your levels checked?
If they are still low then maybe as per Jimmy legs advice a bit of zinc is needed x
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Re: Going to try Copaxone

Postby CVfactor » Thu Feb 09, 2012 8:03 pm

I have my Vitamin D checked often and the highest it ever was is 260nmol/L which is just over what is considered the upper limit of the safe range.

But I think that the only thing science can definetely say right now about vitamin D is that if you are deficient you have an increased chance of getting MS.

As for the effects of pharmocological doses on the course of the disease with those who already have MS, there is absolutely no proof one way or the other.

But I think one has to make a decision based on the science available. It may well be that high doses of Vitamin D can prevent disease progression. There is certainly a lot of studies indicating that it promotes immune system regulation but more studies are needed.

But for me the important thing is to try to first understand how the immune system works and go from there. So this leads me to try Copaxone as my next investigation because there is evidence that this drug acts in a similar way in that it promotes natural regulatory T cells.
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