Thalassemia Patients and Friends

Discussion Forums => Thalassemia Intermedia => Topic started by: namitha on October 01, 2006, 12:44:40 PM

Title: Bone Marrow Shutdown in Thal intermedias
Post by: namitha on October 01, 2006, 12:44:40 PM

Hi all,

Please if any of you have information about bone marrow shutdowns in Thal intermedia, please do post it. This case of bone marrow shutdown especially in thal inters is rather worrying. So please please throw some light on this.

Thanks.

Regards,
Namitha

Title: Re: Bone Marrow Shutdown in Thal intermedias
Post by: Mrs. T. on October 07, 2006, 04:58:20 PM

 :(
I agree.  My brother, who is thal inter, is presently experiencing bone marrow shutdown.  Any ideas what is causing this and how we can possibly be proactive and not reactive to this dilemma?  I am assuming it is happening to patients as they become older adults.  Our family hematologist said that his marrow is like that of ann 80 year old man and he is only 43.
Thanks for the input
Mrs. T

Title: Re: Bone Marrow Shutdown in Thal intermedias
Post by: Andy Battaglia on October 07, 2006, 09:43:26 PM

Hi Mrs. T and welcome to our group,

Has your brother ever transfused? Has he taken anything to increase his Hb as you are doing with procrit? (I ask a lot of questions, both to help me answer and also because talking to patients is how I learn much of what I know). If he has not, it may soon come to that point for him. I am wondering if the bone marrow just wears itself out over the year of over production. I plan on researching this issue more and will report if I can find anything.

Title: Re: Bone Marrow Shutdown in Thal intermedias
Post by: namitha on October 12, 2006, 02:15:51 PM

Hi Mrs. T,

I posted this keeping Dominick in mind. Apparently non-transfused thal inters suffer from marrow hyperplasia or excess marrow activity which stresses it out leading to shutdown. I am praying for Dominick's quick recovery.  :pray

Regards,
Namitha

Title: Re: Bone Marrow Shutdown in Thal intermedias
Post by: Hallu on October 12, 2006, 06:36:47 PM

Namitha,
When I read this post, it scared the hell out of me. I'm trying to gather some more information on same. Can you OR anybody else shed more light on same?

Thanks,
Hallu

Title: Re: Bone Marrow Shutdown in Thal intermedias
Post by: namitha on October 14, 2006, 02:28:19 PM

Hi Hallu,

I too got terribly scared when I first came to know about this. Dont worry. I have read that bone marrow hyperplasia or over worked bone marrow activity leads to a kind of shutdown in non transfused patients. That is why my hematologist advises me never to let my Hb dip below 9.0 gms. Just ensure that your Hb remains steady or you could either try the hydroxyurea thing. I've never tried it myself but it works as others have narrated their positive experience.

I am trying to gather more material on this. Will keep you posted.

Take care and dont worrry.

Regards,
Namitha