Re: update on me (for , slightly OT)

[Guest guest]

Hi, , the name of the medicine is EXJADE, it's new, I think, which is

why it's expensive and they have to check with my insurance first.  Also, it's

for people who have too much iron, not too little.  See, hemachromatosis is

genetic (my dad has it, my mom's a carrier) and causes one to " load " too much

iron.  The body then begins to store it in your organs, which can cause heart

attacks, kidney disease, arthritis, and even death.  They usually take a pint of

blood from me when it's too high.  By doing this, the body immediately begins to

" make " more blood, using the stored iron, therefore lowering the level. 

Personally I'd much rather do that than take another medication that will have

potential side effects...

 

Sounds like you need to take iron, do you?  I have had low levels of potassium,

too.  Makes me wonder if Still's doesn't mess with us metabolically?

 

Take care and be well.

 

 

 

Subject: Re: update on me

To: Stillsdisease

Date: Saturday, December 20, 2008, 9:19 AM

Hi Gail,

Let me introduce myself, I am new to the group, my name is .

You had asked about vitamin deficiency, I know that with Still's anemia is a big

issue. I have to take B-12 also, I take one shot weekly. Do you know the name of

the medicine that you drink? I also have iron problems, when I had a bone marrow

done, it showed I had no iron storage in my bone marrow.

I have wondered myself about vitamin deficiency in Still's.

Right now I am having major problems with my Potassium, I have had 3 potassium

IV's this month.

(((Lots of Hugs)))

 

____________ _________ _________ __

From: Gail <glmrphyyahoo (DOT) com>

To: stillsdisease@ yahoogroups. com

Sent: Saturday, December 20, 2008 7:52:28 AM

Subject: update on me

First of all, welcome to all the new members! I haven't posted much lately, been

too much stress going on in my family. I was sick with a cold for 2 weeks and my

hubby tells me this morning that he's been having night sweats again for quite a

while. Since it took them 8 years to diagnose me with Still's, I can understand

his frustration at the docs not finding out what's wrong with him.

I went back to my doc yesterday, bloodwork still a little off, but " clinically "

I appear to be okay. I have had some mild fevers and joint pain for the last

several weeks and major stomach problems. Had to go off the Mtx B/C of the

cold,will be taking that again next week.

About a year ago, the doc noticed my Vitamin D level was severely low. He told

me to start taking 3 tablets every day. Then, last month, he gave me a

prescription for 50,000 units of Vitamin D to take once a week. When I first

started seeing him, he said my B12 was non-exisitent, so now I take shots for

that as well. Has anyone else had vitamin deficiency with Still's?

As some of you may remember, I also hav Hemachromatosis (iron loading disease).

My iron saturation is now at 56% (not bad, considering it's been in the 80's

before). Problem is, they have been unable to do a phlebotomy to correct this

b/c my red blood cell counts are below normal. They can't take a pint of blood

without it going lower. So, they are contacting Medicare to see if they will pay

for a new treatment where I would disolve this stuff into a drink and swallow it

every day. It's supposed to " bind " itself to the iron and will flush out with my

urine.

AND... I also have a suspicious looking spot that the doc says may be Psoriasis

~sigh~ Going to keep an eye on it, see if it gets worse.

Sorry so long, just wanted to check in. I do read your posts and respond if it's

something I think I can chime in on. Now I think I will unbend my back and limp

out to the den and catch up on the news.

Merry Christmas,

Gail (KY)