Discussion: Exjade experience: North America - Page 10 - Thalforum

Neel_R · February 28th, 2008, 01:34 PM

I think normal value for Iron is between 12-31 umol/L, and Ferritin normally is about 22 - 320 ug/L from what I know. Males tend to be on the higher end of the scale.

Iron is the iron in your body, where Ferritin is the protein that carries iron. It is better to have lower Ferritin then iron in a sense. As your Iron level will change a lot due to diet, were as the Ferritin will not change as much and is a much better monitor of long term body iron.

Roannadeepa · February 28th, 2008, 04:04 PM

Hi
I havent tried exjade but I have been on combination therapy desferal and ferriprox for about 3 1/2 years. my experience was good as my ferritin levels are much lower. in addition I had my T2* done recently and I have moved from being moderately iron overloaded in my heart and liver to: mild in my heart and NONE in my liver!!!!
Clelbration time guys

Neel_R · February 28th, 2008, 06:28 PM

You do combo therapy in Canada? Where are you from?

Is ferriprox taken in pill form?

SophiaG · March 3rd, 2008, 12:45 PM

I'd like to know the same thing Neel. Since when are Canadians able to get Ferriprox? Ferriprox is only pill form. I have a feeling there is some funny business going on in Canada regarding Ferriprox. The dr's tell you till their blue in the face that no one is on it, but I know its BS!!!

I feel like we are being misled when it comes to this information...we need to do something about this...we should call the dr's on it...

Pear · March 3rd, 2008, 02:27 PM

hey,

I let test my ferritine again.
Its seems that im taking a too low doses, i had less bloodtr. than normal.
my ferritine went up from 2200 to 2900 :-o :( :( its a bloody thing. my doc dont want to tst everything. I have no info about my level. But this ferritine explains why i have so often joint pain.
Good luck with your chelation therapy!!!

Roannadeepa · March 4th, 2008, 12:12 PM

Hi,
Sorry if I am starting a war but I have been using Ferriprox since 2004 when i was living in London, England. Since I moved to Canada I have met with several blocks concerning ferriprox.
I am trying to now get approval for its use in Canada, based on my own results. If you are interested in getting it as well it may be wise to contact your association as a crowd will get more notice than a single human being.

Personally it is working for me and I want to continue to benefit from its usage,so please join with me towards achieving this.
Roanna

anubhataneja · March 5th, 2008, 04:18 AM

Hi Poppy

It feels good to know that Exjade has finally arrived and feels even better to know that there s somebody so sincerely posting the results/ observations related to the effects of the same. I have been eagerly for this drug for some time now. There was a time when I was taking both desferal and deferiprone and my ferriting levels had dipped down to a a very safe level. Subsequently, however, I started developing problems due to the intake of deferiprone, like joint pains, giddiness, etc. There have been numerous occasions on which I have tried to take deferiprone because they say that it works better than even desferal on heart and we also get the same absolutely free of cost in our centre. However, all my efforts went down the drain and there was complete non-compliance. Honestly, its not that I do not like taking desferal...infact, I cant sleep without it, but considering the fact that the combination therepy works wonders, I always wanted to be on the same. Now that exjade has arrived, I hope it does the trick. I really appreciate the fact that you have been diligently sharing your experiences with us. Hope you will continue with the same.
Just to mention that even I have problems with the pump. Have you been able to figure out the reason behind the same. Do lemme know!
take care...

Anubha.

Roannadeepa · March 6th, 2008, 03:51 PM

Quote:

however, I started developing problems due to the intake of deferiprone, like joint pains, giddiness, etc

I do agree that every one can have a different experience to tell, Mine has been very favourable so far. You do have to agree that we are all different and there are some that cannot tolerate other drugs and have been warned off.

Quote:

One of my friend tried exjade for 2 months and his ferretine has increased from 2400 to 3100, can anyone tell me the reason why it happened

What I can say is to each his own, I know that some of you have not gotten the chance to even consider other therapies be it combination or alternative. this forum is about informing everyone about all.

I see good and bad things about each topic posted on the various forums. Its just my contribution on what is working for ME

Best Wishes

Neel_R · March 31st, 2008, 03:53 PM

I go in for my appointment with my doc tomorrow. Have been off Exjade for over 3 months now...on no chelation at all.

Ferriten 3129
Iron: 39

Neel_R · April 2nd, 2008, 10:38 AM

Well, back on Desferal. PICC line for 2 months, then to subcue for 7 nights a week.

Almost a year with no needles was great!

SophiaG · April 3rd, 2008, 03:26 PM

Hi Neel,

Sorry to hear you are back on Desferal. Have you thought about having a portacath instead of PICC Line & doing sub q?

Also, can someone clarify what the differene is between Ferritin & Liver Iron Concentration and what the numbers actually mean?

Pear · April 4th, 2008, 08:44 AM

That's true. but i would love the idea of an infusion with desferal. I'm allergic for desferal & exjade:(

What's a PICC line?

I got a porth-a-cath for almost 5 years now. I only use it during bl.tr. (every 2 weeks)

ferritine: 2400

Sophia, i can't help you. I am sorry :$

Good luck with your chelation therapy!!!

Neel_R · April 4th, 2008, 03:05 PM

A peripherally inserted central catheter- (PICC or PIC line) is a form of intravenous access that can be used for a prolonged period of time.

A PICC is inserted in a peripheral vein, such as the cephalic vein, basilic vein, or brachial vein and then advanced through increasingly larger veins, toward the heart until the tip rests in the distal superior vena cava or cavo-atrial junction.

Taken from: http://en.wikipedia.org/wiki/PICC_line

* * * *

Sophia, I was thinking of cathater but my doc says its not necessary...or she doesnt think so at least as last time I had a PICC my levels dropped drastically. I might only even need desferal 5 nights a week after the PICC, we will see.

I had a ultrasound done on my abdomen/liver area. Due to the exjade and some pains i was complaining about.

It has shown a bunch of lymph nodes that I dont think should be there. We are going to do a CT Scan to see what is going on. I just pray its not the dreaded 'C'.

SophiaG · April 4th, 2008, 03:23 PM

Im sorry to hear you are having troubles. I wish you lots of luck!!!! Just keep fighting as there is another little one you must look after ( I hope she is well)

I feel desferal via IV, PICC Line or Portacath are the best ways to chelate iron (at least in my opinion) because the results are amazing. Iron levels drop fast and drastically and there is the bonus of not pricking yourself every night with a needle which can take a toll on the body. More patients who must take desferal because they dont have other meds available to them should consider this option.

Neel_R · April 4th, 2008, 05:16 PM

Do you know if you can do stuff with a portacath?

I know with the PICC i cant lift anything over like 10lbs with that hand...no swimming (obviously). I wonder if sports are out of the question with a portacath?