Discussion Forums > Thalassemia Major

Update from Cherieann

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Smurfette:
Hey Cherieann

The reason I went off Exjade was due to the many side effects it had on me... Since I was sick last Aug, I didnt really let my body fully recover, but I had to start on some form of chelation, so we decided on Exjade, I first started off on the low dose since it was new to me...

Then we increased the dose, but since I started it I go the diohrrea.. I lost alot of weight while on it as well and cause I have a stomach ulcer I took it in the evening and couldnt stomach it..It made me dry reach... On top of that my potassium levels just continued to drop due the doihrrea.
So we decided to stop it  before I got too skinny and lost anymore weight...

I am pettite as it is, but my size 8 clothes were starting to fall off me too... 

So  that is my story with Exjade...

cherieann:
I'm really sorry to hear that.
You sound like you and I are the same size.
Maybe you might try it again? :dunno
What ever you decide I sincerely wish you the best.
Cherieann

cherieann:
Hi guys :hugfriend
Today has been a very eventful day.

1. I had a visit at school from a lady who works for the New Zealand Blood Foundation. She came to inform me that I will be interviewed about living with Thalassaemia for tv. This is a campaign to try and get more New Zealanders, especialy the Polynesians to donate blood. I think it will go on t.v that day in conjunction with World Blood Day.

2. Saw my specialist after school today and we nutted out another special authority form in regards to changing the desferal back to the old form. I have been having major problems with my desferal as Pharmac changed who made it and the stability only lasts less than 12 hours so while my IV is running, you can see it chrystalizing.
Was told by Pharmac not to submit special authority for exjade as they are having a committee meeting middle of this month about the possibillity of funding.
So we decided to just keep pushing about the desferal being remade by old company.
Have to wait and see what happens.


3. The good news however is that my ferritin is at 3256 which is great because last month it was 3586 I think. So the pain is worth it. I guess.
Andy is there any chance of getting any more of the thumb tack needles?
Over here my nurse has tried to get some but even Baxter doesn't know that type. Our needles are shorter and my legs tend to really swell up. The pain is quite extreme to where I sometimes will just drop to the fall rather than stand. Your needles tend to make the pain more bearable and the swelling isn't as extreme. Hopefully they will change back to the old desferal and maybe even fund an oral chelator.

I'm trying to keep my chin up but sometimes I just want to scream from poor fustration. Politics are the bane of my life at the moment.

Still excited about the ferritin though. Hehe :boogie My positive to help me  get through

Dori:
 :congrats with the ferritin drop!!!

I hope we will be able to see your interview too, Cherieann  :smileblue A long time ago I was asked for a donor campagn??, but due illness we were too late to call them back.

 :hugfriend

nice friend:
Hi Cheriean ,
 :congrats for Fe drop , Good luck for your interview,  you will be famous in your country , really soon ...  :goodluck for your interview ..

Best Regards
Umair

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