Always a fight

[elephant]

Wonderful that your going to Addenbrookes in Jan.
Yes Sam need to check on your low energy...it is a sign that something is not right.

[freakyschizogirl]

lol thanks guys...so happy i finally got my way. And it only took a week from my chest consultant writing to my GP to ask her to refer me, to her doing the referral and getting the appointment in the post!! Amazing after the weeks its taken to get to this point.

I'm hoping the low energy is just a monday thing and that i feel better tomorrow. I've felt like this before tho and my GP dismissed it as anaemia. I survived that. lol and that was before diagnosis. But i was ever so low. Really dont wanna go back there again.

[freakyschizogirl]

Hey all...
Just wanted to ask a quick question if anyone has heard of or is taking Adcal D3. My mum says she's remembers me saying to her not to take her Calcium pills for health reasons...must be the pred working on my brain cos i dont remember this at all!!

My bones are definately feeling different. My back clicks every day now...many times. Never been an issue with my back before.

So started the Adcal this evening. Hope they ease off this clicking.

Was showing my mum my new drug this evening as she had got calcium on her perscription too. She said "how comes i get JUST calcium and you get Calcium plus Vitamin D??" I said its cos i'm seeing all the best Doctors. lol.

[pberggren1]

I remember reading recently that eggshell calcium is the best source for supplemental calcium. What do you think Sangye?

[Jack]

If you are taking Pred you should also be taking Calcium and Vit D, but there are potential health risks even with this (it has been linked with heart problems). Nothing comes for free!

[Sangye]

You need both calcium and vitamin D if you're taking pred (or have taken it). Sam, your bones aren't the problem, it's your joints. That's caused by the pred's effects on the adrenals-- makes all the ligaments more stretchy so joints are looser.

Phil, unless you can digest eggshells you can't digest eggshell calcium. The best form is calcium lactate, the second best is calcium citrate. Calcium requires stomach acid to absorb so take your calcium away from your acid-blocker. Calcium lactate and citrate forms are slightly acidic to help in their absorption.

As far as vitamin D, most of us likely need far more than in a typical OTC supplement. Most OTC brands contain 400 IU. I need 8,000 IUs to stay in the optimal range. Your docs should do blood tests for vitamin D levels at least twice a year (though Dr Seo has ordered them much more often for me). I suggest you avoid the prescription form of D-- ergocalciferol. It's an artificial form of D and while it may get your blood levels into normal range it won't give you all the benefits of true D.

[freakyschizogirl]

Nothing comes for free!

truer words have not been spoken jack!! Especially with the drugs and this disease. Thanks for clearing that up Sangye

[freakyschizogirl]

Update on me.

Trying to get copies of letters from my Rheumy to my GP. Another fight i dont want to fight.

Rheumy's secretary says she cant give me the letters cos it has to go through the medical/legal department. I said thats rubbish cos Chest consultants secretary and ENT secretary both send me copies of letters without requesting permission. She sais its the way she always does it and wont budge.

So i ring Medical Records department. They said Rheumy's sec is right and it has to go through them. And that there is a charge for going through my records. I said i dont want you to go through my records i just want copies of letters as they go out and the Rheumy has said i am allowed copies. She said email us with your request and we'll get back to you. So i emailed them this afternoon and noting back yet.

Arrrrgh! Sick of fighting for what i know is my right to have!

On a plus note i see the big boys at Addenbrookes next week!

[Hammy8241]

Just another one of lifes great games!!

You could contact the rheumy by post (snail mail) explaining the 'blockage in the system' and ask they include you in the distribution list.
Mine sends me a copy every time so it can be done without pain.

Good luck

[freakyschizogirl]

Well i'll see what my email does. If i get nothing back i'm considering complaining about this secretary cos she really is the worst i've come across...and she's had some good competition!