NEW to Avonex

A board to discuss the Multiple Sclerosis modifying drug Avonex

NEW to Avonex

Postby cene » Fri Aug 05, 2016 5:24 am

Hi All,

I'm new in the forum and was diagnosed with MS few months ago.
My first symptom was back in 2010 and was only local as Optic Neuritis. No other symptoms whatsoever.
I got Corticosteroid treatment and vision got back to normal in 4 weeks.
I was Not diagnosed with MS since it was considered as CIS.

My second attack was last December 2015 again with Optic Neuritis on the same eye and again got the same treatment and vision got back to normal.
By March i was having one more event but no changes in the lesions which was strange feeling in the legs and some gait problems.
I got diagnosed with MS and was put on Avonex by end of April.

First few times it was really bad with severe side effects but finally I started to use Brufen 3 hours after the injections and it seems that works well for me.
Very little or no side effects.

This is my story so far. I'm scared for my future as most of you out there, but trying to keep up with my life as well.
Expecting my wedding by end of August and my first child by end of December if all goes well.

Cheers!
cene
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Re: NEW to Avonex

Postby lyndacarol » Fri Aug 05, 2016 6:24 am

cene wrote:I'm new in the forum and was diagnosed with MS few months ago.

Expecting my wedding by end of August and my first child by end of December if all goes well.
Welcome to ThisIsMS, cene. Best wishes on your upcoming wedding.

In the testing leading to your MS diagnosis a few months ago (or certainly in the testing a pregnant woman receives), you probably have had many blood tests. One of these should have been a vitamin D blood test (the "25-hydroxy D" test) – vitamin D is used in virtually every cell of the body; vitamin D deficiency is the most common deficiency; and Vit D deficiency can result in neurological symptoms.

If you have or can obtain the actual test result number, would you share it with us? In January, my Vit D results were only 24 ng/mL – frankly deficient. People with the MS diagnosis often have low vitamin D (as well as low vitamin B12, magnesium, zinc).

For your child's sake, it is important that you have an optimal vitamin D level:

D*facts Pregnancy (7 min.) May 2007
Dr. Carol Wagner interviewed by Carole Baggerly (Wagner works with Dr. Bruce Hollis, world-renowned vitamin D expert)
https://www.youtube.com/watch?v=hPm1U9ZZra0

The woman should have her serum vitamin D levels checked.
Supplementation with 4000 IU vitamin D daily is recommended for pregnant women whose level falls below the 40-60 ng/mL range.


Vitamin D Status during Pregnancy and Risk of Multiple Sclerosis in Offspring of Women in the Finnish Maternity Cohort, March 2016
http://archneur.jamanetwork.com/article ... id=2499458

"Conclusions and Relevance: Insufficient maternal 25(OH)D during pregnancy may increase the risk of MS in offspring."

Studies are linking low vitamin D levels in children to asthma, allergies, diabetes, and a million other things – please discuss your vitamin D level with your OB/GYN. Even consider having your baby's vitamin D level tested at birth and discuss the importance of D in your child's development with the pediatrician.
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Re: NEW to Avonex

Postby cene » Fri Aug 05, 2016 7:04 am

Sorry i was supposed to mention that I'm a Male :)

Thanks for the wishes and will pass on to my fiance as well.

BTW i'm taking regularly Vitamin D as supplement and also Magnesium and some other vitamin supplements like B Complex and Zinc.

I have read somewhere that Niacin (B3) in high dosses over 1000 mg daily was used as cure for MS in some isolated cases that showed some improvements but i'm not yet into it.

Anyhow thanks for your reply.
cene
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Re: NEW to Avonex

Postby lyndacarol » Fri Aug 05, 2016 9:14 am

cene wrote:Sorry i was supposed to mention that I'm a Male :)

Thanks for the wishes and will pass on to my fiance as well.

BTW i'm taking regularly Vitamin D as supplement and also Magnesium and some other vitamin supplements like B Complex and Zinc.

I have read somewhere that Niacin (B3) in high dosses over 1000 mg daily was used as cure for MS in some isolated cases that showed some improvements but i'm not yet into it.

Anyhow thanks for your reply.
Best wishes to you both!

Vitamin D is important to women and men! I think BOTH you and your fiancée should be tested for vitamin D status. The following article may be of interest to you:

Preventive effect of vitamin D3 supplementation on conversion of optic neuritis to clinically definite multiple sclerosis: a double-blind, randomized, placebo-controlled pilot clinical trial. (2013)
http://www.ncbi.nlm.nih.gov/pubmed/23250818
Multiple sclerosis (MS) presents with optic neuritis (ON) in 20 % of cases and 50 % of ON patients develop MS within 15 years. In this study, we evaluated the preventive effects of vitamin D3 administration on the conversion of ON to MS (primary outcome) and on the MRI lesions (secondary outcome) of ON patients with low serum 25 (OH) D levels. Thirty ON patients (15 in each of 2 groups, aged 20-40 years) with serum 25 (OH) D levels of less than 30 ng/ml were enrolled in a double blind, randomized, parallel-group trial. The treatment group (cases) received 50,000 IU of vitamin D3 weekly for 12 months and the control group (controls) received a placebo weekly for 12 months. Finally, the subsequent relapse rate and changes in MRI plaques were compared between the two groups. Risk reduction was 68.4 % for the primary outcome in the treatment group (relative risk = 0.316, p = 0.007). After 12 months, patients in the treatment group had a significantly lower incidence rate of cortical, juxtacortical, corpus callosal, new T2, new gadolinium-enhancing lesions and black holes. The mean number of total plaques showed a marginally significant decrease in the group receiving vitamin D3 supplementation as compared with the placebo group (p = 0.092). Administration of vitamin D3 supplements to ON patients with low serum vitamin 25 (OH) D levels may delay the onset of a second clinical attack and the subsequent conversion to MS.
Your regimen of supplements (Vit D, magnesium, zinc, B vitamins) sounds good. I am curious to know if your vitamin D status was determined by testing before you started the vitamin D supplement – do you know your serum level?

As for the form of vitamin D… D3 is preferred by most experts over D2.
As for the dosage… The California-based GrassrootsHealth (http://www.GrassrootsHealth.net) has lots of information. As you may know, there is wide variability among people in their response to the same dosage.

And, another reason for your fiancée to have her vitamin D level tested… If she is considering breast-feeding your child:

Vitamin D and the nursing mother
Dr. Robert P Heaney
http://blogs.creighton.edu/heaney/2014/ ... ng-mother/
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Re: NEW to Avonex

Postby cene » Sun Aug 07, 2016 11:15 pm

Thanks a lot for the info!

About my vitamin D intake i have not checked yet my serum levels but I'm planing to do so soon.
Currently I'm taking 5.000 IU Daily but i think i will increase to 10.000

Maybe you can suggest as well.

I take also sunbathes as much as possible on sunny days.
cene
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Re: NEW to Avonex

Postby NHE » Sun Aug 07, 2016 11:27 pm

cene wrote:First few times it was really bad with severe side effects but finally I started to use Brufen 3 hours after the injections and it seems that works well for me.
Very little or no side effects.

I took Avonex for 10 years. I always used to feel a bit cruddy the next day. Ibuprofen helped with that as well and usually pretty quick, e.g., within 20 minutes or so.
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Re: NEW to Avonex

Postby cene » Sun Aug 07, 2016 11:32 pm

NHE wrote:
cene wrote:First few times it was really bad with severe side effects but finally I started to use Brufen 3 hours after the injections and it seems that works well for me.
Very little or no side effects.

I took Avonex for 10 years. I always used to feel a bit cruddy the next day. Ibuprofen helped with that as well and usually pretty quick, e.g., within 20 minutes or so.


Thanks for the info.

How is your situation now? Do you still take Avonex or?
cene
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Re: NEW to Avonex

Postby lyndacarol » Mon Aug 08, 2016 6:14 am

cene wrote:About my vitamin D intake i have not checked yet my serum levels but I'm planing to do so soon.
Currently I'm taking 5.000 IU Daily but i think i will increase to 10.000

Maybe you can suggest as well.

I take also sunbathes as much as possible on sunny days.
Please do request the 25-hydroxy D blood test – it is important to know your starting-point serum level.

With your history of CIS, you may be interested in the title of the following article:

If I had clinically isolated syndrome with magnetic resonance imaging diagnostic of multiple sclerosis, I would take vitamin D 10,000 IU daily: Yes
Multiple Sclerosis Journal, 2013
http://msj.sagepub.com/content/19/2/137.full.pdf

10,000 IU daily has no danger of toxicity, according to several studies. It is considered to be a physiological dose, i.e., historically, the amount one can make in the skin with exposure of sunshine at solar noon (the time when UVB rays are present – only UVB will make vitamin D) for 15-20 minutes on bare skin (no sunscreen, no long-sleeved shirt).
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Re: NEW to Avonex

Postby NHE » Mon Aug 08, 2016 7:54 pm

cene wrote:How is your situation now? Do you still take Avonex or?

No, I've been off Avonex for several years now and I don't take any other DMDs.
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Re: NEW to Avonex

Postby cene » Tue Aug 09, 2016 12:12 am

NHE wrote:
cene wrote:How is your situation now? Do you still take Avonex or?

No, I've been off Avonex for several years now and I don't take any other DMDs.


Is there any specific reason why you are not taking and DMDs? Have your condition improved or?

Thanks
cene
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Re: NEW to Avonex

Postby NHE » Tue Aug 09, 2016 9:13 pm

cene wrote:Is there any specific reason why you are not taking and DMDs?

I experienced a long and slow gradual decline over several years and the side effects seemed to be the only thing I was getting out of using Avonex and they weren't worth it anymore.
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Re: NEW to Avonex

Postby cene » Tue Aug 09, 2016 11:06 pm

NHE wrote:
cene wrote:Is there any specific reason why you are not taking and DMDs?

I experienced a long and slow gradual decline over several years and the side effects seemed to be the only thing I was getting out of using Avonex and they weren't worth it anymore.


That is great!

Have you used any specific diet, medications, lifestyle besides Avonex?
cene
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Re: NEW to Avonex

Postby NHE » Wed Aug 10, 2016 9:16 pm

cene wrote:That is great!

It's hard to tell what you mean by that. I wish that Avonex had better efficacy for me, but it didn't. It also impacted my life in negative ways.

cene wrote:Have you used any specific diet, medications, lifestyle besides Avonex?

Yes. I've discussed these on the other forums over the years. In brief, I've given up sugar for the most part. I eat more and a greater variety of vegetables than I ever have before. I also take a variety of supplements.
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Re: NEW to Avonex

Postby cene » Thu Aug 11, 2016 1:42 am

NHE wrote:
cene wrote:That is great!

It's hard to tell what you mean by that. I wish that Avonex had better efficacy for me, but it didn't. It also impacted my life in negative ways.

cene wrote:Have you used any specific diet, medications, lifestyle besides Avonex?

Yes. I've discussed these on the other forums over the years. In brief, I've given up sugar for the most part. I eat more and a greater variety of vegetables than I ever have before. I also take a variety of supplements.


Can you send me the link of at least the supplements program that you take?
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Re: NEW to Avonex

Postby cene » Wed Aug 24, 2016 4:40 am

lyndacarol wrote:
cene wrote:About my vitamin D intake i have not checked yet my serum levels but I'm planing to do so soon.
Currently I'm taking 5.000 IU Daily but i think i will increase to 10.000

Maybe you can suggest as well.

I take also sunbathes as much as possible on sunny days.
Please do request the 25-hydroxy D blood test – it is important to know your starting-point serum level.

With your history of CIS, you may be interested in the title of the following article:

If I had clinically isolated syndrome with magnetic resonance imaging diagnostic of multiple sclerosis, I would take vitamin D 10,000 IU daily: Yes
Multiple Sclerosis Journal, 2013
http://msj.sagepub.com/content/19/2/137.full.pdf

10,000 IU daily has no danger of toxicity, according to several studies. It is considered to be a physiological dose, i.e., historically, the amount one can make in the skin with exposure of sunshine at solar noon (the time when UVB rays are present – only UVB will make vitamin D) for 15-20 minutes on bare skin (no sunscreen, no long-sleeved shirt).



Hi I have just tested my Vitamin D levels and it is 35.6 μg/L. Should be considered also that I'm taking almost one month 10.000 IU Daily

Please if you can give me any suggestion on this?

Thanks
cene
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