New to the forum

[crackers]

hi luce.yes it's a nightmare.anyone who thinks staying upright for half an hour is no big deal should try it.i made the mistake, when i first started taking it, of bending down to pick up something.the nausea i experienced was awful and lasted most of the day.now before i take it i make sure everything i need is at waist height and the dogs stay in their crates which cracks them up because i feed them when i get up in a morning.i googled AA once it can be scary stuff if your not careful.
john

[Luce]

John

Yes I've read it can be nasty stuff - I'm always worried it's going to get stuck on its way through my system and cause horrible legions.
I take mine on a Saturday morning and sit up in bed on the laptop ordering our weekly food shopping online. Since coming out of hospital I've not had the energy or patience to walk round the supermarket so have got myself into this little routine.
It's good that we've found a way to minimise the disruption this "silly pill" as I have nicknamed it causes us.

What dogs do you have by the way? It's been said before on this forum that animals are great therapy and I have to agree. Unfortunately our landlady won't allow cats and dogs but we have a rabbit, 2 guinea pigs and 2 rats which are great company and I believe kept me from going insane while I was signed off work..

[crackers]

luce.
that's so true about animals and therapy,when sue is at work they keep me company and stop me climbing the walls(if i had the energy that is).as i said we have 2 a mini schnauzer who is 2yrs old called holly and a german shepherd who is 8 months old called bailey.thankfully they are best friends and spend all day playing.holly weighs 1 stone and bailey is seven stone and a real beast but he is so gentle with her and is a big softie(with us anyway).a mate of mine has rats they have their own mannerisms and characters.
john

[Carol]

Yes I also take the alendronate - it's called Fosamax here in Australia. It is a pain and I have to put a sign up the night before so that I don't get up during the night - nearly always am up for an hour about 3pm - and have a cuppa and something to eat with it. Instead I just have a hot cup of water. It's expensive here - about $11 per tablet unless you have had a broken hip etc to prove that you need it. As a preventataive it's not on our Public health system pharmacy program. so I guess that the Clacium and vitamin D are not needed if you are on this drug - is that correct?
regards
Carol

[crackers]

hi carol.i did ask 2 years ago when i was first prescribed AA what it was for and i was told that as you get older the bones don't absorb calcium as easily as in a younger person.the AA helps in this.i am seeing my gp in the morning so i'll ask him about AA.i will post what he says.
john

[Luce]

Carol I guess we are lucky here in some ways as our NHS covers this drug - although I have to pay £7.10 for each prescription I have and usually a month's supply at a time. I must have picked up at least 30 prescriptions in the 3 months I have been ill but luckily we have a pre-payment scheme where you can purchase a card which gets you all your prescriptions for 3 months for just £28 (equivalent to just 4 prescriptions!) so I have saved a great deal of money already.

john I loved the story of your dogs, they sound adorable! I'm not sure why I'm taking alendronic acid as I'm only 25 so my bones should be ok at absorbing the calcium. I thought it was more of a supplement due to the prednisolone making me deficient in calcium.

[crackers]

luce. i saw my gp this morming and asked him about AA.he said it's to counteract the use of steroids which can have a detrimental effect on bone density.i've had a couple of bone density scans in the last two years so now i know why.maybe it's an age thing regarding calcium and AA.i'm 56 so maybe my bones need a little extra help as opposed to someone in their twenties.don't know for sure could be wrong.
john

[Luce]

John

Just did a bit of googling and I'm taking it to prevent losing any more calcium from my bones, which is the side effect caused by the steroids.
Understand now why I don't need supplements to increase my calcium but do need the alendronic acid to prevent losing the calcium I do have.

Might ask about vitamin D supplements though as we get most of that from exposure to the sun. However I am on azathioprine which tells me I need to avoid the sun and I always wear high sun protection due to the increased risk of skin cancer.

Does anyone living in hot climates taking azathioprine also take this precaution?

[Beth]

Hi All,
I'm new this forum, and I've learned so much reading through this thread. I was diagnosed 18 months ago with WG. I've actually been on steroids for almost 3 years now, due to other autoimmune diseases in addition to the WG. I take Calcium and Vit D twice a day, plus Fosomax. I agree it's a pain to take, but my bone density tests have been stable, so it's working for me.
Brande, I wish you the best of luck with all your tests. I sometimes think tests and going to the doctor become like a full time job!
Sangye, I also have had a very high ANCA no matter what my symptoms are. Also, I see you live in Maryland. I live in PA, but my Doctor is at Georgetown Medical Center. Where do you go?

[Sangye]

Hi Beth,
Hello fellow "High-ANCA-no-matter-what-we-do!" I just moved to Maryland in October and started at Johns Hopkins with Dr Philip Seo. They have a whole center just for vasculitis. Dr Seo is the best rheumy I've had. Really understands the emotional components of Wegs also. And, he doesn't order every test in the book just to do it. He's the only rheumy I've seen that doesn't think my weird symptoms mean I'm crazy.