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cheri
Fri Apr 8, 2011, 12:05 PM
Hello all~
I haven't posted for a while....hope everyone is hanging in...
I searched my previous posts regarding Exjade, but didn't get any feedback on this topic specifically.
When I read my Exjade rx paperwork warning, it says specifically not to take if it you have MDS....yet myself and others are on it. ( I am on 1500 mg daily) It always gives me pause when I recieve a new shipment, and I did ask my Dr, but cannot remember what he said.....do any of you have any info to counteract what seems against my instinct to "heed all medicinal warnings"
As always, I appreciate your thoughts..

triumphe64
Fri Apr 8, 2011, 01:56 PM
I can't comment on MDS, but I did have a long conversation with Dr. Maciejewski about Exjade on March 16. He told me it would interfere with at least one of the meds I take. He also said it was possible to over chelate, and that would hurt hearing and visual functions.

Ferritin levels are not necessarily a good measurement as to how much iron is in the blood because some meds cause that number to rise.

On the other hand, chelation might be really necessary because of the true iron levels that have been built up compared to the effects of MDS, AA, PRCA etc.

I hope this helps with the overall discussion.

Birgitta-A
Fri Apr 8, 2011, 04:32 PM
Hi cheri,
It is true that Exjade can give more serious adverse reactions in MDS patients: http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/DrugSafetyInformationforHeathcareProfessionals/ucm183651.htm

Still iron overload in MDS is an indication for the drug. As far as I understand MDS patients have a much more severe disease than other groups of patients with iron overload like thalassemia patients - they have an inherited disease where the red blood cells don't function and no bone marrow disease.

As long as we look out for adverse reactions like creatinine increase due to kidney damage I think we should continue with Exjade. There are a lot of studies showing positive effect of Exjade in MDS patients.
Kind regards
Birgitta-A
!42 units of PRBCs. Exjade (low dose due to low WBCs) since 2009

towncarlady
Sat Apr 9, 2011, 11:24 PM
I have not responded to the forums in quite some time, so I suppose a progress report is in order. After a little over 1 year of EXJADE treatment, I can report a drop in serum ferritin levels from approximately 1650 down to 621 after the last blood test! At this time, kidney and level functions are okay. Frankly, I still hate the daily treatment because of the necessity to take on an empty stomach and the distress with my GI tract; HOWEVER, I can see the end of the treatment just a few months down the way, hopefully. I want to see as close to normal ferritin counts as possible. I have had no further chemo since February, 2009. I have had no additional transfusions since November, 2009. I still have days that I seem to drag in energy, but I have resumed a measure of "normalcy" in life style. I am very grateful for those of you who were willing to share your knowledge and experiences with me, especially Birgitte A. I cannot say that there will not be times that I wish I felt better, and had stronger resistance to infection. I do want to say that not trying EXJADE may have put me at risk later on. When our bodies do not function properly, sometimes the risk is warranted. Be pro-active in your health care, do not be afraid to ask questions, and you do have a voice in your treatment.

You may send an e-mail to me at any time.
BE STRONG and FIGHT A GOOD FIGHT! BLESSINGS ON ALL SEEK ANSWERS!

Exjade 1000 mg per day
Hemoglobin 9.2
Hematicrit 29.2
Platelette 200,000
White counts low normal range

towncarlady
Sat Apr 9, 2011, 11:37 PM
I made sure that hearing and vision functions were tested before beginning EXJADE in March, 2009. Also, I had vision test and MRI, again, February,2009. Everything seems to be normal. Just be sensitive to changes that you experience. We, as patients, are our best research tool!:)

I have had to closely monitor BP, but this is probably more from MDS than EXJADE. Birgitte A. can probably address that issue, better than me. BP is stable with meds that I am on, and do sleep better now...which I feel is also necessary for good health in any situation.

Birgitta-A
Sun Apr 10, 2011, 07:11 AM
Hi towncarlady,
Very good to hear from you again! Dacogen seems to have had a long lasting positive effect though you didn't get so many cycles or perhaps your disease has isn't progressing due to some other reason.

As far as I understand we should not continue to take chelating drugs if our ferritin level is lower than 500 - the risk for neurological adverse reactions is probably increased when the ferritin level is low.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, tx dependent from dx, Thalidomide and Prednisone since June 2010 when I got txs every week and platelets were 22. No txs since Sept 2010. Exjade 500 mg/day and Neupogen 2 injections/week. Latest counts: Hgb 12.7 and platelets 112.

cathybee1
Sun Apr 10, 2011, 05:53 PM
Your progress on Exjade is enouraging.

Bruce and I watched a archived AA/MDS webinar from January, 2011 from Dr. Steensma and Dr. Sekeres. They reported that based on clinical trials only 50% of patients on Exjade are able to make it for a year (because of side effects), and of those who tolerate it, they can expect to see a drop of 500 points. From your results, it looks like a more attractive option. Thanks for posting.

cheri
Sun Apr 10, 2011, 08:10 PM
So, what would be the option (s) if Exjade cannot be tolerated? And at $6,000 per month, does anyone know if it is covered by Medicare? I have health insurance now, and expect to go on Medicare in one year. If Exjade takes that long to work, what long term effects should I look for? I realize creatinine levels, but is there anything else? It seems to have a bit of a constipating effect on me...nothing serious.

Neil Cuadra
Mon Apr 11, 2011, 12:52 AM
So, what would be the option (s) if Exjade cannot be tolerated? And at $6,000 per month, does anyone know if it is covered by Medicare?
Medicare Part D covers prescription medications. People on Medicare choose from the available insurance plans in their state. The plans are run by insurance companies, not by the government. Each plan has its own formulary that says which drugs they cover. You can search the plans and the drugs they cover here (http://plancompare.medicare.gov/pfdn/FormularyFinder/LocationSearch). Type your zip code, enter Exjade (or deferasirox) as the drug you want to check, and see what you learn!

Birgitta-A
Mon Apr 11, 2011, 05:58 AM
Hi cheri,
You know before Exjade was approved many patients were treated with Desferal. In Sweden that is the first drug for iron overload. We get a port-a-cath and Desferal from a home-pump in connection with transfusion during 4 days.

I started with Desferal after 40 units of PRBCs when my ferritin level was more than 1000. After 2 years I needed to combine Desferal with something else. I tried Ferriprox (not approved in the US) but my WBCs decreased. Then I started with Exjade but can only tolerate 500 mg/day due to low WBCs.
Kind regards
Birgitta-A

towncarlady
Mon Apr 11, 2011, 10:21 PM
I would like to explain how my Exjade is funded. First, I have Part D with Medicare. My medicare is managed through VIVA Medicare, a program that orginated several years ago through the University of Alabama.

When beginning Exjade treatment, my doctor presecribed the meds, then, I applied for help through the Chronic Disease Fund in Plano, Texas. After submitting an application and providing information about income and insurance verification, I was approved for a grant to help meet my co-pay. I was approved again, this year for a lesser amount. The grant picks up my co-pay until the grant is depleted.

I think there may be also some other foundations that grant money to chronically ill people. It has been a blessing; otherwise, my Exjade treatment would have been impossible.

towncarlady
Mon Apr 11, 2011, 10:54 PM
They reported that based on clinical trials only 50% of patients on Exjade are able to make it for a year (because of side effects), and of those who tolerate it, they can expect to see a drop of 500 points. From your results, it looks like a more attractive option. Thanks for posting.[/QUOTE]

I would like to say up front....I hate taking EXJADE.....However, the option seemed better than the damage from iron overload. When I say I hate it, it can be rough on the GI tract. Somedays,I just have to realize that some things are necessary to fight for my health. I hope that the end is in sight.

The FORUM has been such a source of information and encouragement!

cheri
Tue Apr 12, 2011, 09:30 AM
Hi
Thanks for your response, but I'm confused! (nothing new)
Does Medicare part B cover the majority of the expense, which for me is $6000 per month, my copay is $60/month. Currently, my insurance covers the bulk of the cost, but will Medicare do the same? I have applied for "ez-pass" which is supposed to help with Exjade co-pays--no news yet. Thanks!

towncarlady
Wed Apr 13, 2011, 12:31 AM
Part D of my Medicare coverage is the drug portion. I then had to get approval from my insurance carrier to be able to get the drug. After that, my drug supplier (BIOSCRIPT) ships to me, and the grant picks up my co-pay. The negative is that I immediately fell into the "doughnut hole". The grant is designed to help patients through this period. Hope this helps!

Neil Cuadra
Wed Apr 13, 2011, 03:53 AM
The Patient Protection and Affordable Care Act of 2010 is closing the donut hole, first with rebates and then with changes in coverage. The donut hole is already shrinking and will be completely gone by 2020 (unless the act's provisions are revised).

johine
Wed Aug 17, 2011, 03:36 PM
My Dr. is giving me shots for MDS.
They are Aranesp and Neupogen.
He had me taking iron pills.
Now that I have had 3 blood transfusions, I have iron overload.
He has now prescribed Exjade.
It came with a waring not to take if you have a lack of red cells.
The Dr. still wants me to take the Exjade.
Does any of this sound strange? What should I do?

Birgitta-A
Wed Aug 17, 2011, 04:43 PM
Hi Johine,
Yes, some things you describe sound strange.

Do you know your ferritin value? You should not start iron chelating if the value is lower than 1000.

Hardly any MDS patients should take iron pills - we will often have problems with too much iron during our disease.

I have never read anything about a patient who started iron chelation after 3 txs - 25 is more common.

Among MDS patients that need iron chelation Exjade now is the most common drug. It is true that Exjade can give low HGB but some patients get higher HGB when they get iron chelating drugs perhaps because that kind of drugs decrease the free radicals in the bone marrow.

Perhaps you could ask for a second opinion from a doctor who is a MDS specialist?
Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006, very severe bone marrow fibrosis, tx dependent from dx, received 142 units of PRBCs, Desferal after 40 units of blood Aug 2007 in connection with txs, Exjade Sept 2009 - July 2011. Positive result with Thalidomide and Prednisone.

Marlene
Wed Aug 17, 2011, 04:47 PM
I find it hard to believe your ferritin is up high enough after just 3 transfusion. Do you know what your FE level is? If it's under 1000, I don't think it's recommended to start chelation therapy, either Exjade nor Desferral. But it's been a while and I haven't kept up on the latest info on Exjade.

How low is your HGB. Even though John had SAA, he took Exjade with a HGB of 8 - 9.

Neil Cuadra
Wed Aug 17, 2011, 05:01 PM
My Dr. is giving me shots for MDS.
They are Aranesp and Neupogen.
He had me taking iron pills.
Now that I have had 3 blood transfusions, I have iron overload.
He has now prescribed Exjade.
It came with a waring not to take if you have a lack of red cells.
The Dr. still wants me to take the Exjade.
Does any of this sound strange? What should I do?
johine,

I too am surprised to hear that you have iron overload serious enough to require treatment after only 3 transfusions. Some people receiving transfusions go a long time before having a problem with iron buildup, while others need treatment for iron overload after only a dozen transfusions. Was this diagnosis based on ferritin tests or did you undergo a liver biopsy?

In any case, Exjade can lower blood counts, although when it does it is most often the white count and platelet count. So it works against the goal of your transfusions. But that's not a contraindicator. In other words, it doesn't rule out taking Exjade but it makes clear that the doctors are doing a balancing act to keep your counts up while controlling iron.

towncarlady
Thu Aug 18, 2011, 10:32 AM
Johnie,

I was on Exjade for 13 1/2 months, good news...it worked: however, it was very hard on digestive system. You need to be proactive in your care. My ferritin count was at 1650 when I began treatment, and at one time I even higher. I am not currently on any care for iron overload. I was blessed in that I don't think I suffered any harm from the Exjade, but this treatment should not be approached lightly. Birgitta is a good source of info; she was a great help to me.

I currently have hg level of 9.2; I staying fairly stable. Thanks to all of you who have been a help along the way. I believe this forum was very instrumental in helping me learn more about MDS.