Exjade update

[jga_socal]

Dear readers,
This is an update on my use of Exjade. I have seen that Exjade is a popular subject so thought I’d share my empirical experience of one. Thus, consider the following anecdotal, without scientific value.
I started Exjade in April, my Ferritin was 2750.
I am taking 2 grams/day, dissolved in h2o.
The Ferritin test 3 weeks later was 2150. A month later Ferritin was 2700. A month later, June 25, it was 2350. Kinda jumpin around, that Ferritin. My next Ferritin test is this Wed.
I have reported back to this group that I’ve had very minor side effects, a little nausea, that’s all.
The last 2 weeks of August I started feeling some discomfort in my tummy, left side kinda. No so much pain as a ‘full’ feeling. It was getting worse. I dont think I was eating very well and my general sense of well-being was declining. When I went in for a Procrit shot on Monday Aug 27, I told the nurses about my ‘feeling’. I did not hear back from my Doctor so I discontinued Exjade on that date. I also stopped taking all my supplements that I had been taking for over a year. A week has passed now and the ill feeling has mostly gone away. I assume it was the Exjade. But, but maybe it was the CoQ10 or the fish oil or the Epicor? Dont know. At any rate a serious side effect of Exjade is listed as renal failure and subsequent death. Not good. I’ll tell the nurses (they are the only ones who listen to me) on Wed that I’ve discontinued Exjade. Hopefully my Ferritin level will show more improvement this week.
Reading more about Exjade I’ve learned that Ferritin can only hold so much iron in blood plasma. When no more Ferritin can be produced in the blood, the iron gets incorporated into some nasty hydroxyl and oxygen radicals.
Radicals are bad. It is my understanding that consuming lots of antioxidants helps to neutralize the radicals. Having said this, I’m not sure that drinking lots of orange juice is going to reduce iron overload. Probably not.
The existence of a Ferritin limit also explains why Ferritin levels jump around after Exjade use is initiated. When Exjade robs Ferritin of it’s iron, Ferritin levels go down. But then more Ferritin can be formed from the iron floating around in the hydroxyl and oxygen radicals. Ferritin is recreated, readings quickly rise. Only when iron stored in the radical form is eliminated will Ferritin go down and stay down. Maybe that’s why my Ferritin went down 20% then quickly back up again. At least my Ferritin is not rising now.
Hope you found this of interest.
Jim

[marlene]

John’s FE jumps around also. He was 1565 in May and then 2058 in Aug. Our doc at Hopkins says it will continue to jump around until it get closer to 1000. He also said to start looking at the Saturation levels and Iron Binding capacity once you get below 1500. FE is very unreliable as to how much iron you really have….all you know is that you have a lot to get a FE reading that high. And once you have too much iron, everything can cause your FE results to rise…if they leave the rubber band on your arm too long, FE reading will be off; if you have recently injured yourself, FE reading will be off; how they handle the blood specimin can throw it off also.

Very frustrating.

Marlene

[jaxem]

jim/marlene
my wife’s about to start exjade. good comments & i’ll know more what to expect. thanks!

[Mary4Mike]

Jim,
I am curious to know if during the time you took Exjade (April to August 27), were you also getting transfusions? That is also going to cause your levels to jump around.

Just wondering,

[jaxem]

jga/marlene
before starting exjade, were you told to get hearing & sight tests done to establish a starting baseline for any side effects?

[marlene]

Hmmmmm…I don’t think we were told to do so only because I had read about Desferral and Exjade before we talked our doc about it and I went ahead and set up John’s appointments on my own. He had them checked prior to starting Desferral and then again before he switched to Exjade. Since he’s on a lower dose, I think there’s less of a chance that it will effect his hearing/eyes. Also, I think it’s more of an issue if you continue with chelation therapy when your iron store are low…like an FE below 500.

I think it’s a good idea to have a baseline done before starting.

Marlene

[jaxem]

marlene
her ferritin level is above 2000. her dosage is 30mg/kg weight daily. just got her pills today. the pharmacist group state that baseline hearing & vision tests be done before taking med. they also say to monitor liver & kidney monthly. i guess what the med does is remove the iron out from the liver and expel it through the urine (chelate process).

[marlene]

You might want to consider starting with a lower dose and working up to full dose to minimize side effects. 30mg/kg body weight is the higher end of the dosing. I think more is excreted in the feces. Desferral excreted via the Kidneys more. John notices a orange hue to stools. Where as when he was on desferral, his urine was orange.

[Mary4Mike]

Jack,

It was never recommended to Mike to have baseline hearing & vision tests prior to starting Exjade, however he has these exams done on a timely basis dues to wearing glasses and hearing aids.

Also, our doctor told us that the Exjade and iron are excreted through the stool. He has never noticed a major color change nor has he had any side effects (that we know of). He takes 4 of the tablets every morning. He started with that dose right away, but that is not to say that starting at a lower dose is a bad idea.

The best to your wife.

[Mary4Mike]

Jack,

How is your wife doing on the Exjade? Did she start right out with the recommended dose or is she working up to it?

Hope all is well and best wishes for your visit to Univ. of Minnesota……and that you get the answers you are looking for.

[jaxem]

mary
thanks for asking. she’s gone through about a week at the full strength 30mg/kg weight fairly well. biggest problem so far is to remember to take it 1/2 hour before each meal 3 times/day. exjade is expensive!! thanks for the good wishes about our upcoming trip to MN. I hope she gets accepted!

[Mary4Mike]

Jack,

I was glad to hear your wife is doing well on the Exjade and surprised to learn that she takes it 3 times a day. Mike takes his full daily dose (4 500mg tablets) first thing in the morning 1/2 hour prior to anything else. Yes, Exjade is VERY expensive. Our copay for it is over $2,500 per month. The price of the drug has slowly gone up during the 18 months that he has been on it.
I will say a prayer that your wife is accepted at MN and that she will have a good outcome!

[helenr]

Jim

Were you having liver function tests while taking the Exjade?

My husband developed drug induced hepatitus within 6 weeks of starting. He started slowly but was looking for obvious side effects which he did not have. He tried later on a very low dose but his liver complained immediately. These medications need to be monitored carefully until the doctors have more experience using them.

It can also take a few months to begin working.
I hope it works well for you.

Helen

[jga_socal]

Yes, I’ve had monthly comp metabolic panels. They show BUN, CREATININE, SGPT, SGOT and other levels. The liver function enzymes SGPT and SGOT are 69 and 21 respectively. The 69 is a little over normal. The kidney enzyme levels are still in normal range.

The tummy discomfort went away around the same time my doctor examined me and he found no problems. So I’ve been back on Exjade for 2 weeks now.

When I stopped Exjade I also stopped taking fish oil, CoQ10, B6. Since that time I’ve had 2 CBCs that are showing a definite decline in RBC production. I’ve had a xfusion of 2 units 3 weeks apart twice now. I promised myself if this happened I’d go for the sct. I have given my doctor the go-ahead. I’m told they have found 2 10/10 donors for me. Very lucky. A year ago there was only 1. So maybe now I have a backup donor in case the first graft does not take.
I still have to pass some tests before the sct is approved, but I think I qualify. My last marrow biopsy showed 6% blasts. I think my organs are still strong. Hanging in there…
Jim

[Bini wife]

Hi Jim,

Thanks for your post, I think you may have something there. My husband’s been taking Exjade for about 5 months and initially his ferritin levels dropped sharply and quickly but there’s been a lot of fluctuation since. He had several txs and his ferritin levels went up around 4000! We have found it very difficult to understand all the different indicators on panels regarding iron. Most doctors either seem not to understand it themselves or find it hard to explain to us. As for antioxidants, we juice almost daily (we tried the Gerson therapy for a while so we have a Norwalk juicer). Green apples are a very good source of antioxidants. We juice green apples along with carrots as well as greens. Can’t hurt!

Carmen

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