exjade notes

[patti]

Just wanted to share some of what we’ve seen with mom and the exjade. She started 250mg daily about 3 weeks ago. This is well below the recommended therapeutic dose of 1250mg. She had no side effects at this dose initially but after two weeks developed a rash and they took her off of the exjade for a week to see if the rash would disapper. They also checked her ferritin to see where it was at after only two weeks.

Our *assumption* was that with the low dose she would not see a drop in her ferritin but would at least remain steady as she is transfusion dependent. What we found actually made the doctor quite happy. Her ferritin had actually dropped 200pts in just two weeks of therapy and she had had a tx in that two weeks. We are unsure if the drop was just the exjade or a combination of the exjade with the mung beans and jujubees that she’s been taking from Dr.Kou (those are both chelators and platelet increasers). Nonetheless, she is back on the 250mg every other day this week and then every day starting next week. Although her ferritin will not drop quickly at this rate, we see no reason to bump her up and potentially cause the issues others have seen at the higher doses since it is dropping.

I guess my thought was that for those that are taking the mega dose (that’s what I consider it) that the company recommends, you might consider a lower dose (pick any number) and see if it’s less taxing on your body. Your ferritin may drop at a slower rate but does that matter? I guess that depends on the individual.

Also, you can throw in a 68cent bag of mung beans and get a chelation boost also. Much cheaper then the exjade. Anyway, we’re pleased with this.

patti

[Carl]

Patti,

My doc has just asked me to start exjade and given the chronic case of diarreah I had the last time I started at the “recommended” mega dose I told him I would restart it again at 200 mg daily and work up to the bigger dosage. He had no problem with that (if he had, I didn’t care either).

I hope my iron will respond at the lower dosage as well and good luck to your mom.

[Russ]

Carl, what’s your ferritin level and how many units of PRBCs have you had? My Hemo/Onc suggested exjade when mine reached 1000 but I declined because of cost ($5000/mo. with the “do-nut hole” in Medicare D) Don’t figure I would be around long enough for the bad stuff with iron overload. I pray you will respond to the lower dosage – keep us posted. Any mung beans in your diet?

[patti]

Russ,

Mom’s out of pocket only ended up being $172 for the first 3 months of treatment (at the 250mg. dose). Maybe it was a mistake. We just figured that worst case she would have to put out 5K in one month and after that it would be much less. But that’s not possible for everyone. I know there is something called the healthwell foundation that will pay for a good portion of what medicare doesn’t if folks can’t afford it. I believe the cutoff is $26K annual income (they don’t count actual assets) for a two person household. They still have openings for iron overload cases. MDS cases are closed for assistance right now. I believe their website is http://www.healthwellfoundation.com.

We also thought that iron overload wouldn’t affect mom because we had read over and over again on this forum that it takes ten years for damage to happen. However, we discovered that this is not correct for people who are very young or over about age 60. Mom has already exhibited a number of issues with the iron overload. It is now showing up in her skin. The skin around her eyes is just as bronze as can be. It is also affecting her pancreas and gallbladder now. So, I wouldn’t necessarily wait. It also depends on how many tx you’ve had. Mom has had 50+ units of blood to date. You can compare that to what you have had and see where you fit in. Mom is 76.

Carl, I hope you’ll see the same thing we did with mom at the lower dose.

All the best,

patti

[Russ]

Patti, Thanks for the info. My $5000/mo. was based on the max dose in the do-nut hole. Could consider a plan with coverage thru the hole but besides higher premiums cost would be 25%/mo. or $1250/mo. So far I’ve only had about 14 units of PBRCs. Pray the low dose continues to work for you. Do you give a lot of credit to mung beans and JuJubees and do they cause any ill effects?

[patti]

Russ,

It’s hard to know how much is exjade and how much is the foods. My best guess is mom’s getting help chelating a little from both. The mung beans and jujubees (the American name for these is dried red dates) are just foods. There are no side effects. Unless one eats too many beans. I supposed there could be side effects from those, if you know what I mean. The mung beans are a lentil, I think. They cook just like a lentil. Mom says the dried red dates are good – one just has to make sure to get those without added sugar. We get both of these items from the oriental food store. The mung beans are 68 cents a bag and the jujubees are $3 a bag. Cheaper then any medicine I know! And they taste better then medicine.

I know what you mean about the supplement plan. Not worth it. I wasn’t sure how many RBC’s you’d had that’s why I mentioned how many mom had. I think as long as you keep track and stay on top of the iron if it starts getting high you’ll do fine.

All the best,

patti

[Russ]

Patti, Thanks so much – I will look into the mung beans and jujubees. The reason I was concerned about food supplements is that I went on curcumin and gingerol based on Dr. Raza’s recommendation. Then I had some bleeding problems in my knee and noted that both substances must be discontinued before surgery – apparently not a good idea for those with low platelets. Many good wishes and prayers for your MIL. I should do a rating for you for having been so helpful.

[patti]

Russ,

There are some herbs (curcumin and gingerol being two) that you do have to be careful with. Even Dr.Kou is really careful with mom and some of the herbs he gives her because just the right amount can increase platelets but just a touch too much can actually cause bleeding. It’s a very delicate balance and hard to do if someone’s not helping/guiding you. I wish every major city had a Dr.Kou. We feel very blessed.

Take care,

Patti

[Carl]

Russ,

I have had 57 units of PRBC, mostly within the last year. I was pretty much transfusion free for a year on Thalidomide. My ferritin count is just over 1300. My insurance pays 100% for the drug since I have met my deductable for this calendar year, but I can understand your reluctance to go out of pocket on Exjade since it is so expensive. The other medical choice for iron overload involves a cathater and a pump at night so I pretty well ruled that out.

[Russ]

Thanks all, I guess I shouldn’t be too worried with only about 14 units PBRC. Patti, we not only don’t have a Dr. Kou but I’m not sure I can find an oriental food store. around South Bend or Mishawaka, IN. Wer’re mostly hicks here in fly-over country.

[patti]

Russ,

Well, we sort of live in the sticks. An hour from the nearest big city. Our town has 5000 people in it. I have to drive the hour to get to the oriental food store but all of mom’s doctors are there so it doesn’t really matter for us. You might try the internet to buy the beans and jujubees (might have to use the American name for them) from an internet website. Then you don’t even have to drive! I forgot to mention that mom eats 6-10 of the dates a day.

All the best,

Patti

[Jimbob]

Russ,
How far are you from Kokomo? Maybe this can help.

Pak Oriental Grocerie Store
1520 N Washington St
Kokomo, IN zip code
Phone: (765) 459-8821

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