Exjade side effects, dosage

[bety]

My husband has severe pancytopenia and iron overload (ferritin level over 3,500). He may be going on Exjade soon. What are your experiences with the drug and what dosage are you taking? I would appreciate your input.

Husband, 87, dx 7/03, RARS. Recent memory problems, sleepiness and fatigue. Tx dependent. Lately, one unit prbc and one bag platelets every 2 weeks. Does better for a couple of days after the txs.

All the best, bety

[Alice S]

Hi Bety

My mother started Exjade on June 7, 2007 her ferritin level was 6810 at that stage (long story about how it got there!) Started on 500mg per day, but was told that she should be taking 1800mg, by the Oncologist at the Medical Aid. One of the doctors confirmed this and she will take it up at the next transfusion.

She has had no side effects from the Exjade and her sight and hearing have not been affected (thus far) – she tested before commencing the Exjade and then again last week.

She was tired from November last year, in a sense almost lethargic, but within five days of commencing the Exjade she started feeling better and has been able to do a lot more, she says she no longer feels lethargic, even though her ferritin is still over 6400 – she is planning her trip to visit her family and me in Europe. Her memory was affected as well.

Hope this helps, if you wish you can write to my private email.

Take care

[bety]

Dear Alice,

I appreciate your rapid encouraging response. It will be a while before Ed will get the medication, but I hope the results will be similar. I am glad to hear that the fatigue subsided somewhat and that the ferritin level improved with a 500mg dose.

All the best, bety

[helenr]

Dear bety and Alice

Even though the ideal dose of Exjade may be about 1500 mg it is wise to start very slowly and monitor the liver function. My husband developed drug induced hepatitus within the month between liver function tests. We were told later that it is wise to start very slowly even though you have no obvious side effects. It gives the liver a chance to adapt as it is mainly processed via the liver.

Good luck

Helen

[Alice S]

Dear Helen

Thanks for the info. That is exactly what my mother plans to do, she will first take 1000mg and see what happens and so on. I picked this up from previous posts here on the forum.

Problem is that with such a high ferritin level – anything over 1000 is poison to the body, this is what the doctor is concerned about as the ferritin is not in her blood but on the organs ie liver, heart amongst others. My mother has learn’t to listen to her body!

I receive the news letter from ‘Ask about Iron’ and keep informed that way. I think the link is on the MDS Foundation home page.

One interesting fact I learn’t about iron overload, is that it does not matter when transfusions are received but rather how many. My husband received 22 units about 17 years ago during 2 open heart surgeries and then 6 more about 11 years ago. Recipe for overload! No one ever mentioned this. I will ask the cardiologist to test this when we return to South Africa, will be very interesting to see the results.

Take care both of you.
Alice

[bety]

Dear Helen and Alice,

I appreciate your advice re starting with a lower dose than prescribed. Did you discuss this with your Hematologist? My husband is very thin (always has been over 60 years since I know him). I do not think he can tolerate the designated dose initially. Even though Exjade dose is calibrated according to weight, I still am concerned.
Thanks again for your input. bety

[choijk]

My father was prescribed Exjade 2 weeks ago but he hasn’t started yet. His ferritin results as of july 20th is 1666.0. Quite alarming since he has now had 15 units of rbc transfusions. How fast ferritin just rises.

What dosage did everyone start off Exjade with? I went through most of the past blogs re: Exjade but noticed that many members would indicate that they are taking Exjade but wouldn’t mention the dosage.

Our hematologist suggested my dad start at 1000mg. Problem is my dad is a VERY small frame man and I read on the Exjade pamphlet that the recommended initial dose of Exjade is 20 mg/kg body weight.

Bety do you know what your hema will start your husband on?

Alice, 1800mg sounds like a lot! I don’t really know anything about Exjade other than the experiences I’ve read on this forum but it just sounds like a very high dosage compared to 500 mg.

Hope to hear of everyone’s experiences! Thank you!

[bety]

Dear Choijk,
My husband is a light weight and has a narrow frame. His ferritin level is over 3,600. He has been transfusion dependent for about one and one-half years.
His Exjade dose is prescribed at 1250 mg daily. The drug should arrive in another week or so.
I will try to report the ferritin changes and any side effects. I hope you will be able to do the same. Let us hope the drug is effective.
All the best, bety

[bobweinberg]

I have been on Exjade since Jan 06. Before that I chelated for 7 years with desferral using an infusion pump for 8 hours per day, 7 days per week. I started the Exjade at 1500 mg (I weigh about 178 lbs) but with 2 units of RBC’s every two weeks, my ferritin exceeded 1,000 so the dr is now prescribing 2500 mg daily. My last ferritin was 1590. The Exjade causes severe diarhea, but otherwise it is tolerable. What is killing me is the side effects of Vidaza, but the stuff seems to work. My hgb rose from 10.5 (after receiving two rbc units) to 13.7 in three weeks. But I feel awful from the nausea.

[choijk]

Bety, definetly let’s exchange notes. I will let you know the results of Exjade. We will be starting on Monday. I emailed our hematologist if it would be okay to start my dad at 500 mg instead of the 1000mg. ill let you konw what his response is.

Bob, I am so glad to hear that Exjade has been working for you and even more happy to hear that Vidaza has risen your hgb to 13.7! I think my dad would just flip out and do a summer sault if his hgb just even rose to a 10. he is usually around the 8 range. i send you positive thoughts and warm wishes your way – hopefully vidaza will keep you transfusion independent!

[bety]

Dear Choijk,
I am very interested in your hematologist’s response to your e-mail. I am concerned that my husband may have bad side effects from the prescribed dose. Starting at 500mg sounds like a good idea.
All the best, bety

[Sandi1]

Hi Bety,

My father’s ferritin levels were 5,300 or so. Then he began taking Exjade at the end of May. He started at 500mg and now is up to 1500mg. His levels have gone down to 4,700. It is still high but at least it is going down. His doctor reminded him that there hasn’t been extensive research done on Exjade for patients of his age. She wasn’t certain that it hadn’t produced negative side effects but he believes he needs to continue with it. There aren’t many options out there.

-Sandi

[bety]

Dear Sandi 1 and Choijk,

Have your father and husband had any memory problems with the iron overload? My husband’s memory declined precipitously following several serious nosebleeds. After txs with prbc and plts., the memory seems to improve for a few days and declines again. I am hoping that the Exjade (when he starts taking it) might recover some of his memory loss. Sandi, how often is your father transfused?

All the best,

bety

[choijk]

Bety,
My father’s memory hasn’t been affected at all at this time. It is a wonder that he is sick because he has a sound mind. His memory is impeccable. The only difference I would say after his MDS dx is that he is a little more tired and his legs do not have the strength it once used to. But overall, he is a very go lucky happy guy and he is in the best spirits. One of the main reasons he may be so positive is that he doesn’t know the severity of his condition. He is a low risk MDS and the likelihood that he will progress to leukemia is low. However, he is transfusion dependent, and receives 1-2 pints of rbcs every 2 weeks.

[Alice S]

Hi All

Moms memory is only affected just prior to a tx, although not always. She is in hospital today for tx. She will hopefully discuss the increasing of the Exjade with the Hematologist and I hope the Doc agrees to let her incease it in stages.

Take care
Alice

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