Iron overload and Desferal

[cthomas555]

About grinding the Exjade tablet…

The pharmacist said it also ok to use a pill crusher from the drugstore. Just make sure you use nothing aluminum in the process.

Chris

[janeann]

cthomas555 thanks for reply my husband had a very bad infection at the site of the injection a couple of months ago and it has only recently settled. He has his desferal administered via a subcutaneous infusion for a continuous 72 hours every week this is getting him down as it is a constant reminder that he has a “CONDITION” his term for MDS. He also has a 3 unit transfusion every 3 weeks and is also waiting for some results on his liver tests as the iron overload may have caused some damage We both feel very isolated as we do not know of anyone else locally with MDS to talk to.

[cthomas555]

Janeann, the former president of the AA/MDS Foundation who died last wore a Desferal pump 7 days a week for about 12 years(?). He attended all their conferences welcoming and comforting new patients. He also traveled abroad wearing his pump in his breast pocket to international conferences.

I did not like being on the pump at all.

This is another good site I enjoyl

http://www.marrowforums.org/index.html

Chris

[janeann]

Chris the site you directed me to appears to be very good I will have a better look tomorrow as it is now 23.30 here so bedtime.

[cthomas555]

Quote:

Originally posted by cthomas555:
Janeann, The name of the gentlemen I referred to earlier was Bob Carroll who wore the pump 24/7.

posted July 09, 2006 03:28 PM

Bob Carroll the president of the Myelodysplastic/Aplastic Anemia International Foundation died last month. He had MDS for at least 18 years and was on transfusions and desferal almost all of that time. He even traveled to Europe at least once with the MDS and while on the desferal. Professionally, he was an educator. I understand from other patients who met him at the annual conferences that he was a really great guy.

http://www.aplastic.org/aplastic/news/news.php?id=99

In his tribute to Bob, one gentlemen says…
“Bob and I would talk about different treatments and options for him and for myself. . . He helped me adjust to the dreaded Desferal pump, the expert he was since he had already been using it for several years.”

http://www.aplastic.org/aplastic/information__hope/stories_of_inspirati/bob_carroll.php

[**DONOTDELETE**]

Hi All,

I’m here under false pretences. I don’t have MDS but PNH. However I have been taking exjade since November. My ferritin levels jumped around between the 3000 to 5000. I started on a dose of 1500 as I’m transfussion dependant but when my ferritin levels didn’t show a sustained decrease it was upped to 2000. I’ve had symptoms of GI irritation which appear to be the most common side effects of the drug. However there’s also been a persistent increase in my bilirubin and liver enzymes.I withdrew from the drug and two weeks later these levels were still raised. However after 4 weeks they’ve dropped right back down again. Now that they’ve returned to base I’m prepared to give exjade a go again but I am concerned that some permenant liver damage could be done. Has anyone else had a similar experience and if so what did your consultant recommend?

Thanks for listening,

Denise

[cthomas555]

Denise, I would like to suggest that you phone the pharmacist at exjade and see if he can offer you any information, if not your hematologist would probably be the only one to answer that question for you because it seems to me it would be determined on an individual basis.

My best guess is that you have two options…starting exjade at a lower dose and see what happens or going back on Desferal.

I have inflammatory diseases that make my ferritin quite high as well as the tx.

Chris

[**DONOTDELETE**]

Thanks Christine. My hematologist isn’t familiar with exjade as I’m his only patient. He is keen to get me chelated though. I think his eagerness to get me chelated might be affecting his judgement of the seriousness of raised liver enzymes though! The idea is that I take the drug to prevent liver failure not to promote it!!

I felt awful on desferal so that isn’t really an option. Has anyone here tried HBED iron chelation and do you know if it’s an approved drug yet?

Do the inflammatory diseases raise your ferritin levels by much Chris. Oddly my ferritin levels have dropped about 800 since I discontinued exjade.

Thanks again,

Denise

[cthomas555]

Denise, I have not heard of HBED being used in the USA but maybe someone else has. The last study I found for HBED on PubMed was 2004.

I share your concern about the liver damage from chelation with Exjade.

I’m not sure if they can tease out how much of the increased ferritin pertains to the iron overload and how much to the inflammatory diseases. I will ask on my next appointment with the hem/onc, not sure I’ll get a reply.

What so you think is making your numbers bounce around like that?

I’m sorry I can’t be more helpful.

Chris

[helenr]

Denise,

My husband had a similar experience afer only 5 weeks on 1500mg of exjade. The haemotologist believed the drug company info and was quite surprised, even though it is referred to in the literature. When his liver recovered after a month, he tried again and after only 4 days of 500mg the enzymes were rising. The damage is not permanent. He decided to go back to desferal but like you his ferritin kept decreasing after stopping it.

When things settle down in the future he may try again because the liver may have been sensitised from the first high dose. It seems to work very well for some people while others wait for ages to gain an effect.

good luck, Helen

[den-ise]

Hello All,

I’m the same Denise but for some reason I’ve had to re register as there’s no record of me 🙁

Thanks for your replies Chris and Helen. I don’t know why my ferritin levels are bouncing around Chris. I’ve had my C5 checked and there doesn’t seem to be anything inflamatory going on, don’t have rhumatoid arthritis or diabetes……

My consultant hasn’t made a firm decision either way yet but as he put it no chelation therapy is likely to be easy. Am just thankful that the damage isn’t permenant!

All the best,

Denise

[bety]

EXJADE-New warnings.
Please Google article: Facts & Comparisons: Revised Warnings and adverse reactions sections for Exjade.
Those on Exjade should read this article.

[frank]

i just come back from my doctor, and i am sure the Exjade cause my white and plate dropped. since my ferritin levels dropped from 4000 to below 100, my doctor recommanded me stop using it. and after 2 weeks, my white count get back to 4.0(previously is 2.0), and plate get back, too.

Frank

[cthomas555]

I read it was not recommended to reduce the ferritin level lower that 900 on Exjade?

I have an appointment to go in and talk with my hemmatologist next Friday to discuss all my concerns about Exjade and iron overload. He has spent months evading me.

I’m experiencing more and more tachycardia and a general malaise. I believe the persistent diarrhea is caused by the Exjade. I continue to lose weight. Grrrr!

Chris

[frank]

yes, the cause of diarrhea is exjade, i had it in the early stage when i started the medication, but got improvement after a while…

Frank

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