Exjade side effects, dosage

[Sandi1]

Hi Bety,

My father usually needs to receive a transfusion of whole blood (2 units) every two weeks. Having a low blood count of course causes him to be forgetful at times. After the transfusions, he feels better and can think more clearly. Exjade hasn’t helped with that. But I think it has helped him feel a little better overall. Right now he is still recovering at the hospital from his bout with congestive heart failure in June. He was on Revlimid at the time. He is getting stronger, his white cells are rising (?) but his reds are still the same. Overall, after all the treatments over the past several years, his blood counts have remained somewhat the same. But his blasts were eliminated. :- ) I wish your husband luck with the Exjade. And want to say that my parents have been together for sixty years (this Dec) also. God Bless.

-Sandi

[Mary4Mike]

Hello All,

I am so happy that I found this forum a couple of months ago. I have read all the back posts and I finally go up enough nerve to register and take part in this wonderful ongoing discussion about what we all have in common. I have learned much and even taken some of this info to the doctor visits.

I wanted to let you know about my husband’s experience with Exjade. He has been on it since March 06 with a beginning ferritin of 2500 from 10 txs. He is down to 1100 with 7 more txs during his time on Exjade. His dosage is 2000mg. He has had no side effects. His kidney and liver counts are checked monthly. He has just started his second month on Revlamid. We were told to give it 4 months to know if it is going to do anything for him.

I am happy to be a part of this group.

[bety]

Dear Choijk, Alice, Sandi, Bob and all you wonderful people!!!
Thank you all for your comments and help.
We were at Ed’s hematologist today. Unfortunately, his counts keep dropping. His low plts are especially worrisome (13).
Are any of you folks on a trial to increase plts production? I have been considering it, but Ed does not want to see any other doctors. Hopefully, he may come around to my point of view. On the other hand, sometimes, less action may be better than entering the unknown.
As for the Exjade, it still has not arrived.
By tomorrow, I will probably know if the txs helped improve his memory.
All the best, bety

[choijk]

Just wanted to give an update with my dad’s Exjade experience. He started taking 500mg of Exjade as of Monday, July 23rd. So far, so good. He doens’t feel any of the side effects. My dad juices apple juice daily. I know he should be drinking the greens but he absolutely refuses now. So we just let him be and have him drink fruit juices. So he juices a cup of apple juice a day and dissolves the Exjade. He says the taste isnt so bad and he just chugs it. I’ll keep you updated if there is any changes.

[Sandi1]

Dear Bety,
I am sure you are getting appropriate treatment in NY. I hope your husband will keep up the hope and determination through all of your efforts.
If the Exjade doesn’t arrive, do call them down South. We had to follow up with them several times for delivery. Bety, my father doesn’t have low platelet counts but low white and red. Keep up your spirits.
-Sandi

[bety]

[bety]

Hi,
Ed took his first dose of Exjade 500mg tonight with apple juice. I used the LGS Pill Crusher, which is very easy to use and pulverizes the tablets to a fairly fine powder. I purchased it for about $6 at a local pharmacy that just went out of business, but it can be purchased on the internet if your drug store does not carry it. His ferritin level is around 3500 or higher.
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Husband, 87, Dx Rars, 7/03. Did well with aranesp for a couple of years. Now tx dependent, pancytopenia. All his counts are very low (wbc .3, hgb between 5 and 8, plts 13. Variable memory loss and sleepy, depending upon hgb. A couple of months ago, he was very energetic with out any memory problems, even with low counts. I am hoping the Exjade might relieve some of his symptoms. bety

[jga_socal]

Hi. I’ve been taking 2000mg exjade daily for my 215lb frame since April. Ferritin started at 2780, went to 2100 3 weeks after exjade start. 5 weeks later ferritin went back to 2750. The latest reading 3 weeks ago was 2400. I get 2 rbc bags every 5-8 weeks. I used to be on a 2-bag, 5 week schedule but for some reason, the last few months my rbc needs have diminished. Next mon. I go in for the blood test. I’ll prolly need 1 or 2 rbc units again. That will have been 7 weeks since the last xfusion. Last CBC showed my WBCs at 11, the top of the normal range. I’m wondering if exjade, or just my mds progression, is causing an increase.
hope this helps.
Jim
I cant figure out exjade, the way my ferritin bounces all over. It really has minimal side effects. my metabolic panel shows no strange enzyme activities. No real nausea or diar, etc… It also has no taste. I know I must be lucky.

[bety]

Hi,

Ed was discharged from an almost 3 day stay at the hospital for constant mild to moderate nasal bleeding. None of the forum hemorrhage stopping tricks worked this time. At the ER, his plts were 12. After 10 units of plts, and 3 units of blood, his bleeding gradually subsided. On the way home from the hospital, he started to bleed again. Our h’s colleague, who is covering his pts. while he is away, thinks Ed will need another bag of plts to prevent more bleeding. We will try to get to the blood bank tomorrow.

In the meantime, we have placed taking Exjade on hold.
bety

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