New to Exjade

Hello All,

My ferritan level is 1600, so my Dr decided to put me on Exjade. I took a month for my health insurance to approve it and they would only approve the 125mg pill. my dose is around 1625mg(13 pills) per day. I started taking it this morning at 5am. I don't seem to sleep for more than 2hrs at a time anyway so I was up without any problem. It wasn't too bad considering I'm an adult and I basically just swallowed without tasting. I used water to mix it. I am going to do the split doses. Seven 125mg pill in the am and 6 125mg pill in the pm. I drank it and went back to sleep so far so good. I will try to keep this topic updated and note any side effects of positive results.

See you all soon.

Bobby,

Perhaps you can talk to Eileen at the Cooley's Anemia Foundation and ask for some advice on how to get the insurance company to approve a higher dose tab. It makes no sense to have to take so many pills per day. It seems a real hindrance to compliance.

Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999

Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org

I will drop her a few lines. Thanks. I have 5 refills thru Accredco Pharmacy. One of the consultants there said it was common for insurance companies to do this, but maybe next time they will allow a higher dosage.

Good luck with exjade Bobby .

Zaini.

Best of luck , Bobby !!! ....

Best Regards
Take Care
Umair

I had my 3rd Dr's visit today since starting Exjade. After my second visit I never got my ferritin results, but he gave them to me this time. So after 2 or 3 months on Exjade, my ferritin went from 1600 to 1020. I was shocked. My hgb was at 8.5. I will get my ferritin results from today by Friday and if they are lower than 1000 the Dr will take me off of it. He said when it starts to get any lower there is a possiblilty of issues with sight. So far mine is ok.

Along with my Exjade I started drinking 3 cups of Green tea per day. That's about the only thing I've changed about my diet. I'm still taking the Nitric Oxide supplement with no adverse effects that I've notice. I will update again when I get my latest ferritin count.

That's pretty quick progress, Bobby. Hopefully this indicates there is little, if any build up in your organs, and chelation will remain an occasional need at most. Cool!

That's pretty quick progress, Bobby. Hopefully this indicates there is little, if any build up in your organs, and chelation will remain an occasional need at most. Cool!

hi me usman from pakistan. best of luck booby .
friend god help you
in Pakistan the name of Exjad is ASUNRA(Deferasirox)
lot of thalassemia patients used it and have very good results bec of his compliance .

Usman,

Welcome on board .

Bobby,

Thats such a great news,it took my 9 year old about a year to reach a level below 1000 with exjade and her ferritin was around 14-1500 when she started, and you are already there  but why would they take you off of exjade,can't they lower your dose to maintenance dose or something?

Zaini.

Thanks All,

Hello Usman and Welcome!

I expected at least 8mths of Exjade minimum. I don't think the Dr even expected those results. As far as a maintenance dose I'm not sure. He gave me the impression that he didn't expect my ferritin to rise rapidly once I got it down. If he takes me off of it we'll see how fast it rises when I go back in December for my next appt.

Usman,

Welcome on board .

Bobby,

Thats such a great news,it took my 9 year old about a year to reach a level below 1000 with exjade and her ferritin was around 14-1500 when she started, and you are already there  but why would they take you off of exjade,can't they lower your dose to maintenance dose or something?

Zaini.

zaini u r right . bobby u should continue Exjade bec every month u taKe iron from blood transfsion. u decrease the dose of exjade maintaining  dose but not to stop the therapy   

thanks zaini and bobby

bobby
the maintaining dose in Pakistan is 20mg
most of the doctors do this

Usman,

I don't get blood transfusions on a regular basis. My last one was about 3 years ago and before that it was 20 years. I maintain a Hgb of 8.2 to 9.0. The last time I got a transfusion it had dropped to a 6.9, but it's been stable since. I excersize and eat alot to maintain my weight and i think that helps, I definately feel better because of it.

I got a call from the Dr. yesterday and my ferritin is under 800, so he has completely taken me off of Exjade and will check again in December to see if its rising or maintaining. I will continue to drink tea as I always have and excersize to keep my muscles strong and energy up.

Thanks again for all the support.

okk friend thats g8t
which tea u take brother

I used to drink lots of sweet tea(Black tea) which is very common in restaurants all around. About a month ago I switch to green tea mainly because of its chelation properties and its effects on cholesterol. I been enjoying it alot. its kind of addicting. I drink about 3 cups a day. It's called Bigelow green tea and its in single tea bags sold in most of the local stores here.