Discussion: Exjade experience: North America - Page 7 - Thalforum

poppy · June 6th, 2007, 03:25 AM

no i was using a stainless steel spoon. i've lost another kilo nearly back to normal

Neel_R · June 6th, 2007, 11:44 AM

My mom gave me an article on someone takign Exjade. It said also to make sure that you do NOT use any steel utencils to stir it. But you should use a plastic one. I since have changed to plastic.

Marcello · June 7th, 2007, 06:57 PM

Hmmm I'm still not convinced with this drug. Yes, it's hard to resist and the idea of a tablet for iron chelation is attractive. Still don't trust this stuff though. Lately it seems like every drug is being pulled off the shelves. All because drug companies want to make a quick buck off a faulty product. Ha ha maybe I'm the only cynic on this site but just thought I'd spice things up. Signin' off...

poppy · June 7th, 2007, 08:05 PM

trust me your not the only cynic. It's good to question everything!!!!

Neel_R · June 8th, 2007, 10:40 AM

Quote:

Originally Posted by Marcello

Hmmm I'm still not convinced with this drug. Yes, it's hard to resist and the idea of a tablet for iron chelation is attractive. Still don't trust this stuff though. Lately it seems like every drug is being pulled off the shelves. All because drug companies want to make a quick buck off a faulty product. Ha ha maybe I'm the only cynic on this site but just thought I'd spice things up. Signin' off...

Not to sure about that. It is not easy work to get a drug approved. Novartis has been through alot to get it approved and they know they are held responsible with the outcome of the drugs they put on the market.

Marcello · June 8th, 2007, 01:15 PM

Has anyone had a liver biopsy or having one in the near future after being on exjade? If so let me know about the results, that'd be great!

poppy · June 27th, 2007, 12:02 AM

After being on desferal fo3 3 weeks my ferritin has dropped down to 1300. Aiming to get it to 400 before going back to exjade

Rosanna · June 28th, 2007, 04:42 PM

Hello everyone,
I have been on exjade since last November, I was on 1000mg and the doctor has put my dose up to 1500 3x500mg tabs, I use a plastic straw to stir it with.
Before on the lower dose of exjade my iron was going up slightly, but since going up another 500mg it seems to be going down.

All drugs have a 50/50 chance of working, i had been on desferal for so long that i was really fed up and was going to stop altogether, so I asked my doctor if i could go on it.
I tried the L1 for a 1 year when they first came out, I was always tired whilst on them so I went back to desferal.
Until exjade came out I read all about it, and decided to try it, 32weeks later I am still taking them. When I started taking desferal back in the 70's it was quite a newish drug, with no definate promise back then so everything has to start somwhere! So how do we know if it does'nt work unless we try?
I'll keep you all informed.

vamanjani · June 28th, 2007, 09:25 PM

Dear Exjaders,
It will benefit us all if we are informed about the laboratory results of iron chelation from heart as well as from liver and I am sure patients in Canada, Australia especially can throw light on this issue since we in India, are eagerly waiting for this drug launch which is delayed further.
Is the drug having naphrotoxic effects?

Pidzaman · September 2nd, 2007, 03:09 PM

Dear Exjade Users:

I have started on Exjade since 2 weeks. My dosage is 1250mg. I mix it with water only as I'm diabetic, I don't want to add it to OJ or AJ. Yes, indeed it's a tasteless chalky liquid....and I disolve it 15 min before I stir and gulp it down with couple of glasses of water. Anyways, I had been on Desferal for last 30 years and last 10 years, I must say I have had my ferritin maintained between 1000-500. My last Ferritin before starting Exjade was around 600. I have always been compliant with Desferal, that's not been a problem, but I just wanted a break of 3-6 months so that my sores could heal up properly. Therefore, I pleaded with my haematologist to prescribe me the Exjade. Now, since I have been taking, yes, I do wonder at times if it's working or not coz, there's not a trace of redness in the urine and my stools a bit soft and I notice a degree of darkness compared to my normal stools. Of course, I have felt bloatiness too. I too have felt a bit of nausia and gaging feeling while gulping it down. I have felt a bit of dizziness at times (just for few seconds), and lastly I got my first rash on the 8th day, which was itchy, but then the foll days itchiness went but the rash is still there though reduced. But most important of all is that I notice my blood sugers dansing all over despite my strict diet, insulin and activities. So this is what I want to know from you all, what about your blood suger levels ie. if any of you fellow Exjaders are diabetic and are you monitoring your BS closesly. I'll be getting my first month follow up soon, and after I get the results, I'll let you guys know. Thanks and keep posting your experiences, coz, it helped me to decide to go on Exjade, and I have noticed that the last posting on this thread was a way bit back. Oh yeah, lastly, I get it thru my Provincial pharma care insurance that means, I have to pay a max of $76/month for my monthly quota of Exjade. Thank you.

Le Pidzaman!

Neel_R · September 2nd, 2007, 05:26 PM

Pidzaman, remember you are not suppose to drink a couple of glasses of water with Exjade. Any liquid that you take is based on how much exjade you are taking, for 1250mg you would only need 200ML of liquid.

As per Exjade instructions less then 1000mg is 100ml of liquid. Anything over 1000mg is 200ml.

Pidzaman · September 3rd, 2007, 11:03 AM

Hi Neel:

Thanks for your kind concern, I have exjade dissolved with 200ml, but after that "drink", I take another glass of plain water, no where in the literature does it say that you can't have an extra glass of water. Anyways, it is good to be hydratred well all day, coz, we don't want exjade to mess up with our kidney's. So I personally consume as much as possible H2O, so as to my system is flushed and clean.

Neel, it's good to hear from you, we need to also hear from other Exjader's too, coz, we have to let everyone know what and how we are doing Exjade, and also hear from them of any pros and cons along with reports. Coz, we have to be extremely alert on this drug.....Desferal has had a track record, and this new drug does'nt, so we need all to put their input here on this thread.

Take care. Le Pidzaman!

Neel_R · September 5th, 2007, 01:06 PM

I am pretty sure you need to wait 30 minutes to consume any more liquid or any food. Drinking another glass of water right after would really be the same as just taking the Exjade with all that water combined.

Also I was on 1250mg since start of May. My Iron level has stayed about the same, but now it is at about 2100 fer, and 51 iron. So my Exjade is now 1625mg/daily.

Pidzaman · September 5th, 2007, 02:32 PM

Hi Neel,

Yes, I can understand your logic there. Thank you.

Le Pidzaman!

Pidzaman · September 23rd, 2007, 04:41 PM

Hello,

Just thought of updating my tryst with Exjade. I had to stop just after 2 weeks of starting it. I had all sorts of problems with it, the most imp and critical one was my blood suger readings were going thru the roof (me being diabetic), and of course I got the severe rash, gastro probs, general fatigue and tieredness. Body pains and a bad stiff neck. After stopping it, everything began to return to normalcy after couple of days. My idea of taking Exjade was not to run away from Desferal, I just thought that I'll take short break from the pump for 3-6 months and get back on Des, but the experiment ended in just two weeks. I was'nt feeling comfortable with it's side effects. I am now back to my des routine and just thought of letting you know about this. Just a small advice to all Exjaders, if it suits you well and everything is going fine, then continue with it, but if you feel (gut-feeling) that it is not for you, then do stop it. Here's a link for you to read upon that's been issued recently.

http://www.nasdaq.com/aspxcontent/Ne...LINE000623.htm

Good luck.

Pidzaman.