What's your ferritin level?

Hi ya Dore ( Dodo ),
i hope u had a good day and wish u all the best for 2010 :P ...

Umair

I know about the names. It just that I looked myself up and thought this not what i want to see online.
Anyways, my fe crossed the 1000 on the wrong side this time. Its way too high again. So I need a new game plan. I went from 1500 to 1000 a month ago. There is no way I can go back to that level, so I have decided to take on Sunday, Tuesday and Friday 1500mg and the rest of the week 1000mg. Do you think that will help me? I must say that I hope to find more info about the combi deferirpone/Exjade in Berlin in March so that I can discuss that with my doc.
 

PS. My hemoglobine is very unstable. For weeks it was around 4.7ml/l and suddenly it's now back at 5.7ml/l. I didnt change the interval of Tx, nor the amount of bags. I still get 1 bag every 2 weeks. I don't get it.
Btw my fellow thalassemia friend at the hospital showed me her results. She gets 2 bags every 3 weeks and she got always a hgb of 5.6ml/l (1 out of 10 is different). Does your lab results also look so stable? My lab results never showed such stable results. Maybe that's the difference between pkd def and thal? :S

Dore,

Don't worry,with proper chelation plan you'll get below 1000 again,and yes if you can't take the high dose continuously,taking it twice or thrice a week should be helpful.

Its a bit tricky that why your hb is unstable although you are going for tx every two weeks and getting the same amount of blood,do you check the dates on which the blood is collected from donors,the fresher the blood is the more it stays in the body,have you ever tried increasing you tx intervals and the amount of blood,like you can try getting 2 bags every 4 or 3 weeks,it would be less visits to the hospital and may be your hb will remain stable ? but its my opinion only,you have to calculate yourself whats best for you.

Good luck,

Zaini.

Zaini,
Thats what I want to ask too. Going once a month for two weeks. But first I must find a way to get the speed of the pump up. There is no space to plan me in for a whole day. That;s also a part of the problem which really shouldn't be my problem at all...

Dori,


As you said, you must find a way for your chelation scheme to work. We sometimes tend to leave our chelation plans for the future. That is wrong.Whatever you must do, do it now and it will definitely have good results. You just need to arrange things.

Wish you luck,
Lena.

Concerning exjade, has anyone got any idea if it is okay to split the daily dose into, half the dose in the morning for example and the other half before bed time in order to avoid reducing the weekly dose as Dore is doing

manal

The Exjade dose can be split in half and in terms of half life, this would actually give slightly better chelation coverage. The big deal about Exjade was the once per day dose with this being a great convenience, but in their rush to create a once per day chelator, they may have forgotten that taking a smaller dose more often might make it a bit easier on the stomach. Now there are small trials to compare the efficacy of once per day to twice per day.

If it decreases stomach discomfort, splitting the dose is a good way to take Exjade.

Thanks Andy

Dore

You can ask your doctor to try this to avoid reducing your weekly dose, hope this helps getting rid of the discomfort

manal

Manal, I must ask myself that. My next appt will be in April (6 month interval). I know myself well enough to say that I am not so good in remember that I must take myself pills, so I should life with stomach discomfort.  But I will keep it in mind. Today I thought a lot about taking more extra doses. I mean I am so angry that fe plays it's devil game again. 

I know how you feel Dore, but sometimes it may take a while until you get  to know what suits you best in the chelators. But try to split it for a week and see if there is any difference, maybe you can use an alarm clock to remind you, i sometimes do this for other stuff

manal

Dore ,
dont worrry .. u'll win over iron overload ... just take a breath and re-plan the strategy against iron .. .u r the one who can make a better treatment plan for u regarding ur other routine  plan ...

Best Regards
Take Care
Umair

hi all
mine is now 495

Hi ZS,

Glad to hear that,keep working on it and one day you'll be in normal ranges .

Zaini.

tanx zaini

ZS,
Wao,, that really good ... well done .. keep it up ...

Umair