Exjade update

[covergirl]

Hi Everyone,

I started Exjade in February with no side effects or other reactions. However, in May my WBCs got very low. My ONC did a BMB which came back with no changes – no blasts, no signs of leukemia. She thinks the Exjade caused my low WBC counts.

This is not indicated as one of the Exjade side effects. She said she would let pharma co. know, but I am posting to let others know. We are not sure about this, but since I’ve been off Exjade, my WBCs are back to what we call normal for me. I had my first desferal treatment Friday nite – infused over 12hours – no side effects/reactions.

Just a heads up to those on Exjade to be aware of this. Again, we have no proof, but thought I’d share just in case….

–cheryl

[marlene]

Hi Cherly,

My husband is starting Exjade soon and that is one of the side effects were are concerned about. Even though it’s not indicated on the “official” info about side effects, it’s been known to cause a low WBC. I think that it has been reported as an issue in England or Europe. In fact, his doc at Hopkins told us this could be a possibe side effect. So was May the first time you had your CBC checked since starting Exjade? I would like to know how soon a drop in white cells could show up.

Our doc wants John to have a weekly CBC/chem panel for the first two months while on Exjade. His WBC is around 2.0 with an ANC of 1.3.

[frank]

hi, cheryl;

i started my from April, already use it for 2 months, no side effects… i will check my Iron level with my Doc this Friday to make sure it is working for me or not. i may have to start desferal treatment if it doesn’t work.

Frank

[Naomi]

Hi Cheryl:
I started exjade and it increased the diarrhea to having to change clothes 3 or 4 times a day. I stopped it and have returned back to just the usual loose bowels with the revlimid. I took it Apr 5 to May 18. I think???it was also the cause of the c-diff that showed up. I had not had an antibotic since last March and had no other reason to have c-diff. Sometimes I think one medication reacts with others that you are taking. I have noted this on the diary that I have for the revlimid and hopefully the drug co will look into the possible reactions.
It did not effect my WBC, but my platelets have fallen to 68. Will see where they stand on the next CBC.
I have also gone back to phlebotomy to try to get the iron lower.
Naomi

[covergirl]

Marlene,

My drop in WBC was not sudden. I actually have a pattern of a slight drop but a return to higher counts. My ONC noted that since Exjade the WBCs dropped continuously without the usual recovery. This week it was back up to what would be normal for me. You are a fellow Virginian, where? PM me if you’d like.

My ONC is certain Exjade was the cause, so we have discontinued it. That was ok with me as it was disruptive to my lifestyle. I am blessed to be able to work and generally live as I always have before my diagnosis. Can’t dance the night away but I am blessed to groove a little. Other than the txs and dr appts, many are not aware I am ill.

Frank – good to see you post.

Naomi – My platelets dropped also, which was of major concern because thus far I thankfully have not had a problem with platelets. Platelets dropping actually sent my ONC into overdrive. BMB immediately, like the next day.

To all, take it one day at a time!
–cheryl

[marlene]

Thanks Cheryl.

We live in the DC area. We visited Richmond a few time and have alway enjoyed ourselves. Richmond is nice city…a bit more relaxed than DC.

John will start Exjade next week His doc is starting him at low dose and depending on how he tolerates it, will increase it. His FE is around 2200. And that’s down from 5000. John had SAA and I check this site periodically because we share many of the same issues and drugs. We are hoping that the Exjade works for him. The phlebotomies were a huge strain on his body and the desferral was not a good match. So if this doesn’t work, he have to go back to the phelbotomies.

Marlene

[Naomi]

Marlene:
Did John get any saline to replace the fluid after phlebos? I get it and that keeps me from having trouble after the phlebo. They take 400cc blood and add at least 250 of saline.
I have found phlebo much easier on my body than the exjade.
Good luck to John with the exjade
Naomi

[marlene]

Hi Naomi,

No, they never mentioned replacing the fluid loss. For John, we found that it takes longer to make up the loss with monthly phelbotomies. He had to go to a six week schedule. His HGB is in the 10 -11 range. His doc would like to see John do both the Exjade and phebotomies for about three months to really move things along. He really wants his FE below 1000.

Thanks,
Marlene

[Naomi]

Marlene:
I go for phlebo every two weeks and have saline replace the fluid. I have not had any recovery time and I just continue on doing the things like always. It might be good to ask for the saline replacement. Had to have my gp write it down, as my hemo doc was the one who started it. The gp wasn’t going to do it until I asked for it. Phlebo brought my ferritin from 4800 to 1800 in just over a year. Have gone back to phlebo since going off exjade and doing very well. Going for another tomorrow.
Naomi

[Lydia]

Cheryl, mom had applied to get Exjade (she’s also taking Revlimid – 1 month so far). She thought about doing the desferal instead since Exjade is so expensive with all the side effects too.

She’s under the impression that they had improved desferal and it was an IV but didn’t take as long. But 12 hours is awful long and assume it was done at home through the usual port and not at hospital like she thinks – as it is for her tx’s.

[covergirl]

Lydia,
My desferal treatment was in the hospital. The infusion center at the hospital will not do it, maybe because it takes 12hours. However, I do think it is possible to have it done at home with a pump. I think Chris has done this in the past. Hopefully, Chris will respond to this thread to give you more info. If not, send a PM.

Yes the Exjade is VERY expensive. Its like $5,000.00 for 30day supply for me with a $50 co-pay.

[marlene]

Lydia,

John did desferal at home. They set us up with a home health care provider who provided the training, small pump, needles and all supplies. The desferal came mixed in single dose syringes. John infused it for over 8 hours at night as a sub Q injection. If you still have central line or port, it’s easier because you just hook it up to that.

John’s done all three now….Phelbotomies, desferral and now Exjade. His least favorite was the desferral. Not that he has a favorite.

Marlene

[cthomas555]

Lydia,

I also did the Desferal at home for several month and then developed an allergy and had to discontinue. Home health care provided a nurse to come to my home 5 evenings a week and hook me up for 12 hours. The subcutaneous infusion was placed in my abdomen. I could take it down in the mornings without assistance. Very uncomfortable experience.

After I discontinued the home infusions I was given Desferal infusions each month after by PRC transfusion. It took an additional hours. Now I am on Exjade with no side effects.

Chris

[Author]

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