Fibrosis

[nannie]

Does anyone else with WG have fibrosis. I seem to have got a lot worse over the last 6 months and all the hospital want to do is increase my steroids. My breathing is bad and I can't walk far. I've always been fairly active and as I don't drive I hate not being able to get around. What hope is there for the future?

[mareklondon]

Hi Nannie,

One thing that instantly comes to my mind is the possibility of iodine deficiency (this can be measured via an iodine loading test, which uses a urine sample). There is a lot of research on the connection between iodine deficiency and breast cysts/cystic fibrosis already (I would suggest Googling the work of Abrahams, Ghent and Brownstein) and in coming years we will likely see more research into the other types of fibrosis.

No doubt iodine is not the only factor that will be at play in vasculitis, but may explain why you are getting these symptoms while others are not. I measure iodine regularly in my clinic and have done since 2008 and am continually surprised at the wide range of benefits offered by improving iodine status.

Hope that is of some use.

Marek Doyle

blueprintfitness.co.uk

[kath12341]

I to have wg and have just been told that I have fibosis and hypoxia but have been having a lot of urinary problems as well wonder if this is all connected will mentioned the iodine when next at hospital

[Tony-LakeDistrict]

I have MPA, my lungs were affected for 2 years before I was found to have Vasculitis, . I too can be short of breath & so lacking in energy, but not because of the fibrosis, but because of the actual Vasculitis . Have the hospital given you any breathing tests, these can tell the tale, I have them every 6 months, & so far all is well, although I have a very very bad cough, my use of oxygen is pretty good.

As for the lack of energy, this would seem to be, in my case the debilitating affect of Vasculitis it`s self.

I can walk around the house & cook, but it`s the mobility scooter if I want to take the dog for a walk.

What does the future hold? who knows, but for me it`s a lot better than it looked 5 years ago & I think you will find the same

try not to do too much & have the kind of Christmas that you wish for

Tony