Port A Cath for desferal

Alsalam alekom everyone

how are you? 

I wanted to ask you about having Portacath for my Desferal
I will have it next Tuesday 9th of June ensha Allah
but now I'm a bit afraid whether to have it or not
i decided to have it my self not the doctors request, and i did it due to my high level of ferritin ( 5000+)

my plan is to take desferal 24/7 with the port
or 10 days maybe then take a break from 3-5 days then continuing it and so on
but I'm afraid of the side effects of desferal
especially loss of hearing or vision
it's not like this is the first time I'm gonna take desferal
the issue is with period, is it dangerous to take it 24/7??

any advices??

(forgive my language)
   

It isn't dangerous when your ferritin is high. Many patients are using ports, Picc lines or IV to take desferal 24/7. It works faster than taking subcutaneous desferal. Another option would be to use combination chelation using desferal and one of the oral chelators.

Aaron18,

In my experience, the best way to reduce your iron level is to take a combination of desferal and exjade.  Take desferal and exjade 7 days a week, together they have a synergestic effect and will reduce your iron levels effectively. 


Best of luck & keep us posted,

Sharmin

It isn't dangerous when your ferritin is high. Many patients are using ports, Picc lines or IV to take desferal 24/7. It works faster than taking subcutaneous desferal. Another option would be to use combination chelation using desferal and one of the oral chelators.

Aaron18,

In my experience, the best way to reduce your iron level is to take a combination of desferal and exjade.  Take desferal and exjade 7 days a week, together they have a synergestic effect and will reduce your iron levels effectively.


Best of luck & keep us posted,

the problem with oral chelators is the side effects of it
i can't stand frebrox at all, even a half pill will make me sick and feel nauseous
and exjade was better a little bit, i used it 3 months then i had a pain in my chest and stopped it.

so you think taking desferal 24/7 isn't bad idea

Thank you Andy and Shaman for your reply

Aaron,

I would suggest trying Exjade again in combination with desferal. I would be concerned that the pain in your chest is due to iron overload. Chest pain is not a side effect of Exjade. If you try Exjade again, start very slowly, with a 1/3 dose for two weeks, so the initial side effects are minimized.

Hi Andy
I talked with my doctor about Desferal/Exjade
he said they don't work well together !!! and exjade only works if the ferritin level was under 2000

although it worked with me before, my ferritin level was about 8000. I used Exjade/desferal and it went down to 3500.

so i'm gonna give it another shot, but have a Q. can I grind the exjade pill? ( last time i used exjade i used to grind the pill then take it with flavored milk ) is that wrong??

as for the port I didn't have it till today
every time i go to the hospital for the prot something came up
and i'm afraid of getting keliods scar ! i have to find a solution for the keloid scars first

Grinding the exjade should cause no problem. Taking exjade with milk may cause problem. Calcium and Exjade may not go very well together. Doctors in Toronto advised patients to avoid calcium right after taking exjade. It is also mentioned in exjade FAQ. DO not take exjade with carbonated drinks and milk. You can take calcium products an hour later.

Aaron

The doctors at the Centers of Excellence in the US have had very good results using Exjade and desferal together. I was surprised to be told that they have had results comparable to the Ferriprox and desferal combination. It definitely works. Exjade also works at any ferritin level. At high iron levels, it is advisable to use combination chelation to hasten the iron removal. Like many patients, you have discovered that your own experience is what matters most. If a combination is working for you, keep using it.

Exjade can be taken however you want. The molecular structure cannot be changed by crushing it, and you can do that and mix it with whatever food or drink suits you. The doctors here say it doesn't matter at all how you take it, as long as you take it.

thank you Canadian_Family and Andy

this information really helps

I will inform you if something changed

 Hi Aaron,what about your level ferritin?you finally took exjade and desferal? I wish you the best.
Karima