Difficulties with tx schemes & taking off Exjade

Hello Friends.

First of all: I do not have Thal, though I post this here. (I did not know where to post it otherwise)

Ok, this is what I posted on Facebook:

{My new treatment plans is 4 weeks and two bags. So far this not has been taken into schedules to vacation]

Please note that I do not want to take any risk to get sick on vacation in Turkey.

2 weeks ago I had my previous tx: pre hgb was 8.2 and 2 bags
Today: pre hgb was 9.6 and 2 bags

Next tx is 6 SEPTEMBER. About three weeks I go to Turkey for two weeks.
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Question: Can I go safely to Turkey without a transfusion?
If no, how much bags should I receive?

my idea:
<10.4 no transfusion
9.5 - 10.3 1 bag
>9.5: two bags.

Is this unrealistic? What would YOU advice me?

Thank you in advance

I am confused! (for Dutch standards x1.61)

PS I go to places where tourists normally do not come and will cross Turkey from middle to south-east by bus (very local/rural between).

Tomorrow I will check in and I hope to read something. I am completely confused!

Hi Dore,

2 weeks ago I had my previous tx: pre hgb was 8.2 and 2 bags
Today: pre hgb was 9.6 and 2 bags

Next tx is 6 SEPTEMBER. [bgcolor=#FFFF00]About three weeks I go to Turkey for two weeks[/bgcolor].

i just read bold and highlighted part of your post and got to know that you're gonna spend 4th and 5th week (to your transfusion) out there in Turkey ..  after 3 weeks you're going on a trip for 2 weeks = you're  going to spend 5 weeks without transfusion ,, its 1 week more than your Recent Transfusion plan  ...so, i think could hard to spend 4th and 5th week (post transfusion) in Turkey ( it will possibly keep you tired in your trip and will b a big hurdle for you to enjoy your trip as that must b enjoyed or as u want to enjoy that, so if u want to enjoy that every moment of your trip u must have a Tx bfore going on trip  ) .. .. in my view if you want to enjoy your trip the way u want then u must have a Tx just bfore going on trip, otherwise it could b difficult to spend 5th week out there  ... 

its just wat i think ... so , plz also wait for others (Andy and all other senior members )  to answer the could explain it more clearily n will guide u right ..


Best  Regards
Take Care
Umair

Dore,

From what i understand ,6th September is almost 6 weeks away,why would you take such a long break between transfusions? I think yo should have a transfusion before leaving for your vacation,to be on the safe side,and since you haven't tried 4 weeks interval yet,i think you should try it after you come back from your vacation.

Hope this helps,

Zaini.

Hey Zaini,
It is a mess. And yes I do want to have a transfusion before I leave for Turkey. I am afraid I still am going to get only one unit and that this is not enough so this story continues..

But to my own suprise I am taken off from Exjade for a month. My liver enzymes are too high (dunno how high). You all know me too well that I will not go straight after to the lab to only check liver functions. Instead of that I will do it just before my transfusion in the week of 7 september (I must change that date because we have a family day to remember my grandfather). Based on those results I will restart Exjade or not.

That means I am 6 weeks exposed to free iron. All I can do is probably limit my red meat intake, increase my intake of tea or milk and avoid fruits with meals. Is there anything else I should try?

Dore,

Have you considered getting transfused while in Turkey? Ask Tayfun for info if this is a possibility.

To be honest, no. But it would be a hell of a job to arrange that. I also never had a transfusion abroad before.
When I am able to get those results of tests which lead me off Exjade I would share them with you all here. The good thing of all this is that I can fully concentrate me on taking my supplements. Something I have never succeed in for a longer than a week. That is awful consider I only have to take folic acid and vit d.

One option is to take one extra unit before leaving on your trip. I know people who have done this and it keeps them going during their holiday. Your post tranx Hb will be higher than you're used to, so you may feel very energetic the first few days.

The past six weeks I have had 2 bags and I will try to get one next week too. It's a mess, Andy. I cannot explain it well. I try to get to those 4 weeks but the vacations interrupt that plan. In september I hope to get back to something normal. My friend get three bags before she leaves (even not following her normal transfusion scheme). I will get back to you all on Monday with my frist hgb result of this week.