Newsletter from Vasculitis Foundation for Nov/Dec 2011

[drz]

Just finished reading the latest newsletter. Lot of good stuff in there. Many of the topics we have discussed here on the forum but it is nice to see the experts generally agree with our collective wisdom. There are new webinar and podcsts available, one on vasculitis and and one on immunizations.

The article on five tools to cope with invisible illness starts out "You look so good! You can't be as bad as you say...we can resonate to those remarks, right.

Several articles about individuals affected who did various fund raisers for Vasculitis and to raise awareness.

GPA seems to have one of the highest relapse rates (50-80%) of the autoimmune diseases. Only the arteritises rank that high or higher.

Collectively the 100 plus AI diseases are one of the biggest health care expenditures (estimated 100 billion) right up there with the big boys that everyone recognizes. The recent increase in AI diseases is startling and puzzling. VF estimates 50 million Americans currently have an AI disease. Many diseases have increased 3 or 4 times in past decade or two, probably due to environmental factors that are unknown or unrecognized but causing much concern due to increasing costs for health care. In USA over half of the people do not get care recommended due to high cost of care.

The VF consultants recommend 1000-1200 mg calcium and 800 IU vitamin D daily. Even low doses of pred are considered a risk factor for bone fractures.

There were many other questions they answered which we have also discussed on the forum.

Average length of time with symptoms to diagnosis is four years.

Is any one here chairing one of support groups that meet in some locales.

The VF foundation in KC states it has members in Canada and UK but there is also a VF Canada organization. Any Canadians involved with that?

There is a Reproductive Health in Men and Women with Vasculitis Study in process. Any one here participating since this issue has been discussed recently. How about the Abatacept trials for treating mild relapsing GPA. Wish I qualified for that one.

[Al]

Looks like a great issue, but I only found the March/April issue online. How and where...?

Al

[mama2005]

I got my news letter today can't wait to read it tomorrow it was a long day at cc so I need a medical break. Al I get one sent every month or so I joined the vasculitis foundation and they send it to me.

[Kami]

Hi drz,

I take two extra strength (750) Tums everyday for Calcuim, and one 50,000 Vitamin D monthly.

My daughter and I will be co-chairs of the East Central MN group starting in January. We are very excited about it.

Can't wait to get mine, may be in the mail when I get home? Looks like some good stuff this month. I just became a member so this will be my first offical newsletter. Thanks, now I can't wait to get home and look for it!!

[Sangye]

Kami, Tums is a very poor source of calcium. And taking one big hit of vitamin D a month is not good. That's not at all how the body normally assimilates vitamins. Please check with a holistic doctor for better options!

[Psyborg]

After I had bariatric surgery I was instructed to take daily calcium + d and a multivitamin. Calcium in tums is, I believe, calcium carbonate. Calcium carbonate is not absorbed as well as calcium citrate.

A good source for vitamins and calcium are bariatric supplements. Due to the decreased digestive track we require pretty good and easily absorbed vitamins and calcium chewables. Anyway just another alternative for people.

[Kami]

Kami, Tums is a very poor source of calcium. And taking one big hit of vitamin D a month is not good. That's not at all how the body normally assimilates vitamins. Please check with a holistic doctor for better options!

Thanks Sangye, I will do! I did have an infusion of something for my bones back in February of 2010, I can't remember the name of it I will have to look back. I currently take a multi-vitamin and 1000mg of B12 too as I have pernicious anemia as well.

[drz]

I was told to take both, but to take tums with meals since i guess it helps some with the GERD but calcium citrate is easier to absorb the pharmacist said.

After I had bariatric surgery I was instructed to take daily calcium + d and a multivitamin. Calcium in tums is, I believe, calcium carbonate. Calcium carbonate is not absorbed as well as calcium citrate.

A good source for vitamins and calcium are bariatric supplements. Due to the decreased digestive track we require pretty good and easily absorbed vitamins and calcium chewables. Anyway just another alternative for people.

[jola57]

Drz, Canada has a vasculitis foundation as well and they seem to have an annual get together, but it is a far cry from the way American VF works. We trully are the poor cousins in everything

[Al]

Drz, Canada has a vasculitis foundation as well and they seem to have an annual get together, but it is a far cry from the way American VF works. We trully are the poor cousins in everything

Not so sure about that, Jolanta. There are weak points in US Medical services as well. Along these lines, I don't think it is breaking the forum/s proscription on politics to merely observe that the political climates in the two countries are different.

Al