Advised to start chelation

[Mseth]

Hi Deb,

Thanks for the reply. Does this dose keep ferritin under control, while still getting transfusions?
Yes, fortunately the drug is better priced in India, else Novartis would have missed out on the large number of thalassemia patients who would not be able to afford a higher price. Still, for us it is expensive, as everything has to be managed privately - no govt subsidy or insurance.

Merry Xmas and best wishes for the New Year!!

[Lbrown]

Yeah, I guess it keeps it under control.

Deb

[Mseth]

Hi all,

Just to update this thread, and for those who may be starting out on chelation - After starting out with 100 mg then 200 mg and now 400 mg/day of asunra(exjade equiv) for last 5 weeks, my mother is able to tolerate it well, creatinine is normal at 0.73 (range 0.5 - 1.3), Ferritin down from 3600+ to just below 3000. She has also received 4 units(2 units twice) pRBC in this period.

[Birgitta-A]

Hi Mseth,
Very positive that your mother tolerates Asunra (Exjade) and that the drug has a positive effect on the ferritin level. All iron chelators can lead to higher HGB eventually by reducing the free radicals in the bone marrow. Hopefully your mothe will see this effect too.
Kind regards
Birgitta-A

[Mseth]

Hi Birgitta-A,

Thanks for responding.

Is there any study or information on drop in ferritin levels and HGB increase, at what level of ferritin can we expect any improvement in HGB? Ferritin at diagnosis was 980. The doctor also is of this opinion that there have been hematopoeisis improvement in people after start of chelation, but for that he said she should be on minimum dose of 800 mg/day.

She has increased the dose now to 600 mg/day. Will update with next reading.

Thankyou.

[Marlene]

Glad your mom is responding well to the chelation.

[Birgitta-A]

Hi Mseth,
I wonder how your doctor knows how much Exjade that is needed to increase the HGB? I have never read anything about that and we know that everybody reacts different when we take drugs depending for example on liver and kidney function.

Here is a study about Exjade and HGB: http://www.mdsbeacon.com/news/2012/0...-mds-patients/
Kind regards
Birgitta-A

[Mseth]

Hi Birgitta-A,

I think doctor may have meant that 400 mg is too low a dose to expect an improvement. My mother is approx 43 kg, so starting dose had been put at 800 mg/day to be increased further. Maybe at this dose the iron chelation would be higher/faster. I don't know, just guessing.
If she does fine on 600 mg/day, it can be further increased after few weeks.

Thankyou for the link, I hope we too see some response and HGB increase over a period of time, the study was done after a year on exjade.

[Mseth]

Originally Posted by Marlene

Glad your mom is responding well to the chelation.

Thanks Marlene,hope that it continues fine and there is some HGB response as well.

[Mseth]

Hi all,

Ferritin level has come down from 3600 in Dec2013 at start of chelation to 2300 in Feb 2014. No increase in HGB levels though.
Creatinine increased slightly to 0.86 (from 0.73 to 0.83 to 0.86). Though this is still within normal values of 0.5-1.3, it seems to show an increasing trend. At what creatinine level should the asunra(exjade) dose be stopped or atleast reduced? The dose has been increased to 800 mg/day which is the prescribed starting dose for her.

Many thanks in advance for reading my post and any advice.

[Birgitta-A]

Hi Mseth,
Very good decrease in ferritin level! There are many patients without an increase in HGB though the ferritin level is lower.

I think the Exjade dose should be reduced if/when the creatinine is 1.3 or higher.

Tell your mother to drink as much as possible. That makes the kidneys work better. In fact dietists in reports from conferences tell us to try to drink 2 L extra per day when we have MDS or similar diseases. I like to drink much and have done that since dx.
Kind regards
Birgitta-A

[Mseth]

Hi Birgitta-A,

Thanks for responding. I always look forward to your opinion.

I read another thread where you had mentioned neck pain, i hope you are well now and managing the pain well.

The ferritin drop is positive, this response has happened with a dose of 600 mg/day, I wonder if it is better to keep the drug at that dose and therefore maintain the creatinine levels than to increase the dose of the drug and put additional work for the kidneys. The worry is if the creatinine levels will not return to normal once it increases beyond the normal range. Even at 600 mg/day, the creatinine is showing a gradually increasing trend, but as the doctor had prescribed 800 mg/day, my mother has increased to this dose for last 2 weeks. We will see what the next blood draw shows.

[Birgitta-A]

Hi Mseth,
Yes thanks, after 4 weeks my neck pains at last disappeared.

Very good that you are following the creatinine. If the doctor gives your mother a lower dose of Exjade her creatinine should decrease.

As I probably have written before we manage well with one kidney - they have much reserv capacity.
Kind regards
Birgitta-A

[Caregive]

Husband on Exjade for a month. The place we get it from found a way to reduce our cost from $175 a month to $75 a month. Quite a difference. With other ailments to deal with I am not sure what this drug will do to him. And I don't know if he will notice anything about his health with the ferritin hopefully lowered. I have been following this site and this is the first time I posted here. I wish you all well. Gets lonely with no one to help us locally and hard to explain to people what's it's all about. But we really focus on vegs and fruits and low dairy intake and low meat intake and low gluten intake. Other docs are happy with his cholesterol and such so I think I'll keep doing what I am doing which is all I can do. Cook from scratch, walk the mall, dr appts, transfusions. Contribute to this organization and ask others to do that. We are no where near a support organization so this site helps.

[Mseth]

Hi Caregive,

Does your husband have a MDS diagnosis or some other bonemarrow ailment? Since he is on exjade I presume he is getting regular transfusions. As you can read from this thread I was very wary and anxious of how my mother would tolerate chelation drug, but starting out with a low dose has helped and she is doing ok. Have you been monitoring the ferritin and creatinine as well, exjade will increase the creatinine(a kidney related function) so its important to keep a watch.
As you can see from the numerous posts and threads on this forum, there are many here who will be happy to help you with advice and suggestions whenever you need, so post and ask questions freely.
You may find someone in your area and/or with the same issues you have.
I found an MDS patient in Delhi, India through this forum. Coincidentally, his and my mothers case is almost identical and we now connect and share information regularly.
Wish you and your husband well!!

[Mseth]

Hi Birgitta-A,

Very good that your neck pain disappeared. Was it related to the MDS?

The lab results after 2 weeks of 800 mg asunra(exjade) show creatinine at 0.98(increased from 0.86, 2 weeks earlier). Range 0.5 - 1.3. Ferritin now 2086. I hope the doctor will decrease the dose to 600 mg/day as with this dose, the ferritin was reducing and creatinine increasing very slowly.

[Birgitta-A]

Hi Mseth,
No, I have had problems with my back the latest 50 years but only 4 - 5 days - never one month.

Perhaps you are right and the Exjade dose should be lower.
Kind regards
Birgitta-A

[Caregive]

Thank you to the two of you who seem to be the ones quite knowledgeable about these illnesses. Husband has B12 anemia, IgG kappa MGUS, low grade MDS. And other health situations. He was on aranesp but that didn't help him. Now on Exjade and we have an appt next week to check blood levels. He gets transfused about monthly. His red cells don't mature. His platelets and white cell levels are normal. He is doing well going about his life doing outside activities, yard and garden, farm equipment repair, walking and all. I am so focused on what I can do but feel like I'm swimming in phone calls and paperwork. Also I make our meals super-healthful and encourage him to drink lots of water.

It's fascinating to me that this site includes people from all over the world. I was on another MDS site where a man in Iran was asking questions and I feel for people who live where there is simply less medical care available. Which makes me think conditions of the blood and other things are underdiagnosed so we really don't know true numbers of who has what. How many people are tired and never see someone who recognizes the possible causes. Health care for all. Thanks for listening.

[Birgitta-A]

Hi Caregiver,
Very positive that you try to learn as much as possible about your husband's disease and do so much of the paperwork and phone calls at the same time as you make your meals super-healthful.

You know the first 4 years after my dx MDS Interm-1 I only received supportive therapy since I was afraid of the adverse effects of chemo. My EPO was high so I never reveived Aranesp or similar drugs.

Then I needed txs every week and accepted Thalidomide that has very positive effect during almost 3 years and now I am taking Revlimid with good result.

Hope your husband's disease will continue to low grade!
Kind regards
Birgitta-A

[Mseth]

Hi Caregiver,

Your husband's MDS seems similar to my mother's MDS, with the red cells affected, monthly transfusion, while whites & platelets are normal. I agree with you on the amount of paperwork, appointments, tracking blood counts etc etc, its quite a handful and added to that is the fear of the unknown and progression of the disease.
MDS is a rare and rarely diagnosed problem in India, hence no centers of excellence and limited experience in hospitals here.
Has revlimid been recommended as a treatment option?

[Caregive]

Mseth, thank you. No, revlimid has't been mentioned. What is it supposed to do? I'll have to ask at our next appt. Next event is getting a port put in. Lady at the hospital on the phone was so very nice. Such things do help the situation. Peripheral appointments, for other things, coming up too but April should be a quiet month so we can go visit out of town. And get the garden going. We went to a place of excellence and got a second opinion. Same as first opinion with some slight changes. On we all go.

[Mseth]

Hi Caregiver,

Revlimid is an oral immunomodulatory drug, approved for MDS with del 5q chromosome abnormality. In non del 5q MDS, the response is betwen 20%-25%Some forum members with non del5q are responding to this drug and are transfusion independent.
Since the response rate is low, its a personal choice between trying it or staying with supportive care, i.e. transfusions.
All the Best!!

[Mseth]

After a consistent drop in Ferritin initially, thers negligible decrease in the last month from 2086 to 2045. Does this happen during chelation? Increasing the Asunra(exjade) dose may help but will also increase creatinine.
Wheatgrass juice did not help earlier, can IP6 help in chelation?

[Birgitta-A]

Hi Mseth,
You know the ferritin value can continue to be high because your mother has had an infection lately. One ferritin value does not really tell us much about the chelating effect of Exjade.

IP6 is supposed to have a chelating effect like wheatgrass juice but only some patients response to that drug.
Kind regards
Birgitta-A

[Caregive]

Birgitta, what is IP6?