Thalassemia Patients and Friends

Discussion Forums => Thalassemia Intermedia => Topic started by: Mompooja on January 31, 2022, 04:07:20 PM

Title: Thalodomide
Post by: Mompooja on January 31, 2022, 04:07:20 PM

Our daughter is a thalassemia intermediate and has been on Hydroxyurea for last 10 years and maintaining a haemoglobin of 9 to 9.8
However, for the last 6 months, her Hb level has been between 7.8 to 8.5. So the doctor has told us she will need more support, especially since she is pre puberty.
We have 3 option
1. Regular transfusion
2. Using Thalodomide
3. Using Luspatercept

The doctor has told us that we have to decide which option we would like to choose.
Option 3 is very expensive and not affordable
We need  help and information about the other 2
Especially about Thalodomide,  what we need to know about it, precautions,  side effects, and anything else
Thanks in advance
Grateful 🙏
Pooja

Title: Re: Thalodomide
Post by: Mompooja on February 12, 2022, 04:29:15 PM

Will really appreciate if anyone could guide us
Andy waiting for ur response 🙏

Title: Re: Thalodomide
Post by: nitarora on March 04, 2022, 09:13:57 AM

Hi,

My son is on thalidomide and hydroxy urea since last 7 years.

same case like your daughter

no issues we faced till now

Title: Re: Thalodomide
Post by: Andy Battaglia on March 17, 2022, 10:52:56 PM

MomPooja,
Doctor Vijay Ramanan in Pune is the expert on using thalidomide. He has had good success with many patients, but as is the case with all the drugs listed, some people cannot tolerate the drugs. With all the promise that Luspatercept had, for some people, it has not worked out. Some have good results and others don't and also have side effects they can't tolerate. If you have the opportunity to do it under an experienced doctor, thalidomide is worth trying, but as with all those drugs, the patient should be regularly monitored.

Title: Re: Thalodomide
Post by: Ratri on June 11, 2022, 11:36:19 AM

Hello Andi,

My son is Transfusion Independent Thal Intermedia. Presently Hb 8.1

He is under Dr. Ramanan's medication since Aug, 2021. When we started with the prescribed medicine ( Hydroxyurea, Wheatgrass, Thalidomide etc.)  surprisingly within 20 days HB raised from 6.8 to 9.7. The HB level continues same for 4 months. After next visit  Doctor suggested to stop thalidomide for few moths until DNA analysis done. So we stopped it and after 2 moths HB dropped to 7.4.

After DNA analysis done and spleen check again Thalidomide started. After 3 moths of using all medicines including Thalidomide, his present HB increased to 8.1.

My question is : Why the same medicines can not make the HB level as high as initial? Will it not make my son's HB level again as high as  9.7 again?

Could you please suggest me?

One more thing I wanted to ask, we have an opportunity to travel to Florida, US for few months, Can you please help me to find a good child hematologist who treats Thal patients there? Also if we can use medical insurance for Thal patients in USA?

Thank you so much.
Ratri.

Title: Re: Thalodomide
Post by: Ratri on June 14, 2022, 10:20:23 AM

Hi Andi/Friends ,

Kindly help me about my above query.

Thanks
Ratri

Title: Re: Thalodomide
Post by: Andy Battaglia on September 03, 2022, 08:04:03 PM

Ratri,
Have the other supplements in the routine been continued the same as when the therapy was first begun? Is L-methylfolate part of the program? Magnesium?

To find thalassemia care in the US, it is best to contact the Cooley's Anemia Foundation and ask for recommendations for thal friendly doctors and clinics.

CAF (212) 279-8090, communications@thalassemia.org