Forum Replies Created
-
AuthorPosts
-
marlene
MemberPattie,
Exjade will remove iron even at low doses but it may not be enough to be considered effective. Like Chris said, as long as you are getting Red Cell transfuions you continue to get more iron, about 200-250 mg of iron. So for a therapy to be considered effective, you need to chelate out more than what you are putting in and that translates to higher doses of Exjade. So if you’re getting red cell every two weeks, 500mg of Exjade is not going to show a reduction in your overall load even though you are eliminating some with it. So if two people are on the same, standard dose but one gets transfuions every two weeks and the other only needs them once a month, the second person see a better response to the chelation therapy. All the studies done on Exjade measure the concentration of Iron in the liver and they did not rely on FE reading. I also think everyone was transfusion dependent.
So 500 mg for John is noticable because he no longer gets red cells. His FE has dropped about 100 points per month and he would like to try and speed that up by increasing his dose.
Marlene
MemberHi Lucy,
7000 thousand is high. How many red cell ransfusions has she had? Do you know what her ferritin was prior to her illness. John’s was 392. John had well over 200 packed red cell transfusions over a two year period and his FE got up to 5400. It’s always possible that hemachromatosis (sp) is contributing such high levels. And our doctor has said that high iron can suppress your bone marrow. Apparently, it can settle in the BM. He wants John’s down below 1000 at a minimum. And once FE levels are elevated, everything can effect the test results. Any inflamation, infection, keeping the band on your arm too long when they draw the sample can all effect the reading. We’ve had FE fluctuate by 1500 points in the same month.62 is still young by my standards but I understand where your doc is coming from….he’s focused on the most immediate issue…her AML and want to get that stable.
John is now on Exjade. He started with 500mg in June and we will look to up the dose at the end of Sept. He has had a CBC every two to three weeks along with a chem panel to monitor liver and kidney function. He still has some nausea from it but he tolerates it much better than desferral. Many side effects are dose related. And since John is no longer transfusion dependent, he probably will never need to get to a full dose for the Exjade to be effective.
Marlene
——-
John diag 4/02 SAA. High Dose Cytoxan 6/02. Transfusion free – partial remission. Only med is Exjade for iron overload.MemberLydia,
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
MemberHi 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,
MarleneMemberThanks 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
MemberHi 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.
MemberJanice,
My husband ended up with peripheral neuropathy also. Here’s a really good link for you to look at. Check out the “stickies” Lots of good info on vitamins, amounts and other strategies for PN.
http://brain.hastypastry.net/forums/forumdisplay.php?f=206
The specific B vitamins for PN are: B1, B12 (sub-lingual methly form 1000mcg), B6 (p5p form preferred, 50 mg.) Add in Omega oils (fish,flax seed oil), ALC (Acetyl Carnatine (sp)good for toxic induced PN), and a good calcium/magnesium suppl.
Marlene
-
AuthorPosts
