Recommended Vitamin Supplements.

[300305calum]

Hello there!

Iam an active 44 year old male with Pagets in my right shin. I've had the infusion, which helped with the discomfort, and has resulted in my alchaline phosphate level dropping down from 180 to 145. Also according to my consultant the x rays taken before and 6 months after the treatment have shown improvement, all encouraging news to me!

Im keen to know what additional vitamin supplements you guys are using, if any?

Currently i'm taking "bone health" made by Vitabiotics, 2 tablets a day.

Any comments welcome.

Happy New Year to you all!

N.

[Kuifje]

I am now 70 and was diagnosed with Pagets Disease of my left shin 20 years ago in South Africa where I am still living. After battling to find a doctor that could offer me some hope I was eventually infused with Aredia (I think in UK this is Paramodronate) as one of the first people in SA to receive this, and have had virtually no problems until 6 months ago (18 1/2 years later) when the disease started up again. This is way longer than the normal half life of the drug, so I have been very lucky. The vitamin supplements that I take are fairly normal - a Multivitamin for my age group, Cal/Mag, Omega 3, vitamin E and B12, but I feel that the main reason for me being in remission for so long is because I lead a very active life. I own run a very busy B&B so am on my feet for the best part of the day - I am very actively involved in the sports of Agility and Dog jumping - training my 3 dogs and competing (and winning) with them. From having a couple of "down times" when I didn't do so much exercise I came to realise that you need to keep your muscle strength in your leg good to support the bone. One interesting thing that came out of my last active phase was that while I was waiting for results and treatment I used a walking stick and made sure that every time I put my foot down I made sure that the bone was going against the curve, not with it as would normally happen. The result of this is that the cuvature is now 50% of what it was before. I am very happy about this.

[300305calum]

Hey Kuifje,

Thanks for your reply, your situation encourages me! I also am very active and subscribe to the idea of strengthening the muscle & bones through exercise. Just realised an error in original post.....my alchaline phosphate level is down from 180 - 45!!

Ive got x 2 ski trips coming up in February, and whilst I'm clearly aware of the condition, and the the implications of Pagets, Im determined to carry on as normal!

Thanks for your reply!

N