Iron overload and Desferal

[janeann]

My husband was diagnosed with MDS nearly 3 years ago He started treatment with Epoetin injections 3 times a week to no avail so now has transfusions every 3 weeks but his iron levels are so high he has to have an infusion of Desferal over 3 days a week to counteract the iron. This he is finding difficult to cope with as he is very prone to infections around the site of the needle. We have heard about tablets but no one semms to have enough info on them.

Any comments /advice would be most welcome.
Jane

[patti]

Jane,

In the US a fairly new drug called Exjade is available. It is taken in the AM mixed with some juice or water. It works well. The only caution I would give is to start at the lowest dose (250mg) not the high doses the drug company recommends. Your dad can incrementally go up from there after his body has gotten used to each dosing step. It is hard on the body to start out at the higher doses. Is there some way a doctor could order it from the US for you? Or is there a way to see if there are any European trials going on with it?

patti

[tasmith123]

janeanne.The name of the drug is Exjade.You can contact them at Exjade Pharmacy @1-888-884-5006 They will ask you a few questions then they will send to your house.2 bottles 250mg and500mg take 1750 in am with water. I am on my 2nd month no problems….good luck to you

[cthomas555]

Jane, I have been taking Exjade for about a year. The therapeutic dose of Exjade is based on the weight of the patient so it varies.

I had no problem starting at the therapeutic level prescribed by my physician other than a little cramping which went away in about a week. The Exjade pharmacist is available by phone to answer any questions about any side-effects you think you may be experiencing .

Also, my doctor’s office made the arrangements for me receiving the medication and how it was going to be paid by my insurance.

[covergirl]

Jane,
I am also an Exjade User. My first round last year I ended up with a nuisance rash; but my WBCs took a dive. Not sure if it was Exjade, but I was off for almost a year. Started again in January with no problems. It is slowly bringing my counts down although I continue to receive tx’s every 4-6weeks.
As it is a new drug, it can be VERY expensive. I pay $100 co-pay and I have good insurance.

Best wishes,
–cheryl

[jga_socal]

3 weeks into Exjade, prescribed at 2grams/day.

Side effects so far:
-First day lightheadedness but now gone.
-Very minor bowel discomfort, mostly gone now.
-Constipation (taking stool softener to counteract)

Other notes:
-My Ferritin at start: 2,830 (9x normal max)
-It has no taste
-Full cost is $50 per 500mg pill. ($6k/Mo 4me)
-My private insurance covers 95%
-I’m betting Medicare wont cover Exjade
-Havent had Ferritin test yet to judge effectiveness. Getting one next Monday.

[AlexD]

janeann,

I myself am on Exjade. I have been taking it for over a year now after taking desferal for years. The correct dose is determined by weight and side effects.

I can say that so far, I have had no side effects of Exjade, while as I was on Desferal, I had debilitating stomach cramps and pain around the injection sites.

Exjade works well, I am currently on a 1,500mg dose although I ought to be on a 2gram. My iron is currently 2900 and has been declining. I started Exjade when it was about 4800.

It’s easy to take, I use a mortar and pestle to grind mine into a powder, mix it with about 8oz. of orange juice and chug.

Hope this info helps

[cthomas555]

AlexJ, grinding sounds like a great ideal. I’ll try that in the morning with my mortar and pestle. That was one of my gripes…waiting for it to disolve with only the stirring.

Chris

[patti]

Alex and Chris,

Reread the Exjade directions because some pills actually say you cannot grind them or they won’t work and I honestly can’t remember if Exjade is like that. Mom just let it disolve. But I’m betting the insert actually says something about about that issue one way or the other. Just double check to be sure.

Patti

[AlexD]

Patti,

Having looked over the insert that’s glued to the bottle, it doesn’t say anything about not grinding it up.

I’ve been grinding for a long while now and haven’t noticed a rise in ferritin.

It works well for me, but I’d ask your doc if you have any quirks about it.

Alex

[cthomas555]

Patti,

Why don’t You find it in the insert since you brought the issue up.

[Jimbob]

Patti,
I think your suggestion to check it out was a good idea. One never knows if part of the method of administration has to do with it disolving as designed in a liquid. I do know that most probiotics, for example, become useless if ground before taken. My MIL used to grind almost everything before taking it but some items HAD to be SLOWLY disloved – but that was years ago.
The insert and the information posted on the Novartis website for Exjade do NOT say that the Exjade pills cannot be ground up to make disolving quicker but neither do they suggest it. It might be worthwhile to ask that question to a company representative or the company directly.
Jim

[patti]

Chris and Alex,

That’s great that it can be ground up. I was just suggesting to make sure for the reaons that Jimbob stated. I know some things can’t be and I couldn’t remember if Exjade was one of those. It’s been a long time since mom started it and I hadn’t read the insert since then. Grind away. It was just an idea to double check. Sounds like Alex did that.

Patti

[janeann]

Thanks to all who replied but is there anyone in USA using DESFERAL for iron overload as the tablet form is not readily available here in UK.

[cthomas555]

janeann, I am not on Desferal now, but I did start on the Desferal subcutaneous infusions overnight 5 nights a week, initially.

Unfortunately the nurse who came to my home and set me up each night, did not change the infusion site each time and I developed hives in the area. We moved the needle to another area but the hives worsened and the doctor took me off of it.

Several months later I was given Desferal infusions after each monthly tx with no adverse reaction.

Then I started on the Exjade in Feb or Mar 2006.

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