Discussion Forums > General Chatter
Dore's appt
Dori:
It is me again. There going talks here now that Exjade might be the cause of this. So tomorrow I am not allowed to take the meds and we have to see what will happen. That means me, because I will be home alone. I took it this morning and I start to become very short of breath. My parents left without mobil phones so all I could do was sit still and playing silly games at the pc. It reminds me of that autumn day in 2006 (desferal) and ofcourse I really hate this. Now It really hurts when I take a deep breath. I still have nausea and above all I feel weak.
My family will contact my doctor later at tuesday to discuss this. So please hope, pray, cross, knock on wood or whatever that Exjade is NOT the cause. I am starting to get more and more worried when I talk about this so I think I will turn the tv on to watch something silly or good :wink
Let it be a virus and let the pharmacy have good antibiotics
Take care all & I will post here so soon as possible the outcome of the conversation
Dore :hmm :sandman
P.S. I have appt's at wed & fri in the hospital this week. Friday is blood transfusion, so i hope i wont be in pain this time.
Sharmin:
Dore,
I hope that you feel better very soon. I hope that your symptoms are not caused by exjade and that you can resume taking it soon.
I am praying for you, please keep us posted.
Best,
Sharmin
Manal:
Dore, i am sorry to hear about your illness, but i hope that you will be better soon
Dore, how about examining vitamin and minerals deficency in your body, sometimes these symptoms are associated with certain deficinecies in the body. Knowing whether you are deficent in vitamin and minerals ( vitamin B, A, D, ....phosphrous, zinc,....) will definetly help you and the doctors make a good judgement about exjade, hope you get my point
manal
Zaini:
Dore,
Manal has got a point,you should for this, i don't know if you are taking any supplements,Please share what are you using.
I hope you won't have to stop exjade,but you can also lower your dose to 20 mg/kg instead of stopping it right away,if this is related with exjade the symptoms will lessen with the low dose if not go away,and if they not then they might not be exjade related,or may be then you can stop it for a day to check.
Best wishes,
Zaini.
Dori:
Good morning,
I know what Manal is saying is right. The fact is that I can never explain this to the doc. I have not take my supplements for a few days btw. Only my child doc did check all my vitamins (yearly). I mean with all, all because it were 15 tubes sometimes
As for the update:
My doctor said it is a very small chance that this is caused by Exjade. He told me to stop taking it now. I must retake it an hour after the start of the blood transfusion. If it comes back they will give me something against it. He thinks I am just ill. At the other side did he not talk about taking antibiotics...
I have had similar things with desferal, but the doc at that time did not want to give me those anti allergic stuff. Desferal plus L1 is for me more effective than Exjade, you see... I am probable the only person on earth who prefer Desferal infusions above Exjade cocktails! :grin
Do not ask me how, but tomorrow I must go the the hospital on my one and make it to the lecture about European Law too. (the theory is very difficult). And thursday I must attend the lecture for homework otherwise I will lose the extra point.[Or you come once without homework, or you wont come but send the teacher the homework you made.]
It is like Puja said: Think Positive! :whistle
Dore
p.s. i take tablets with calcium/vitD/zinc plus with vit D only, plus vit E (200IU),plus Vit B Complex and 5mg folic acid. C'est tout. But the last time I took them all was thursday night.
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