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Thalidomide + Hydroxyurea combination

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POAR:
Hi Andy,
Recently we met Dr Vijay Ramanan in India, we heard that lot of Thalassaemia patients under his treatment became transfusion independent as they are able to maintain Hb around 8 to 9 .

He prescribed combinations to 8-10 medicines which includes Thalidomide, Hydroxyuera , Aspirin, Wheat grass and some more along with Deferasirox.
We are bit confused if it is safe for a 9 year old kid with such a big list of medication.

Our son is under regular blood transfusion since the age of 6 months and current frequency of transfusion- 3 weeks. His Ferritin level is around 2000

below are the list of medicnes:

1. Thalidomide 100 mg Daily
2. Aspirin 75 mg / Thrice a week
3. Wheat Grass
4. Deferasirox 800 mg daily
5. Glutathione 500mg
6. Hydroxyuera 500 mg  / Thrice a week
7. Multivitamin Tablets (C2B plus) Daily
8. Vitamin K2 Capsules (SAP-K2) Daily
9. Thal RV (L-methylfolate 1000 MCG+Resveratrol 100 MG) / once Alternate day
10. Injection - Erythropoietin  (SAP-epoeitin 5000 IU) - 1\once weekly for 8 weeks.

we are very confused , is it safe to start such combinations of medicines and also will it impact any other aspects of health ?

As per our previous doctor it can cause overgrowing of bones causing some facial bone deformation if bone marrow works more to maintain Hb, so we are bit confused.
We were settled with one treatment procedure and now moving into another mode of treatment as we always wanted to get rid of transfusion.

we really need suggestion from your side to help us in decision making.

Keru my angel:
Dear Andy

We too need your advise as the same medicines are advised to my 9 year old daughter when we met the Dr. 2 days back. We are going to start the same from 2nd Jan.
Need your advise/suggestions please. Thank you.

POAR:
Waiting for your suggestion before starting the medication.
Please help.

Andy Battaglia:
First thing I want to say is to correct the misconception about the bones expanding, causing malformation that is obvious in the face. That happens when the bone marrow is overactive, but futile in raising the Hb. The bones do expand, which also makes them weaker. This does not happen when the Hb rises, which is the ultimate goal of this therapy. Once the Hb rises, bone marrow activity reduces.

You have to make the decision to try this therapy. I will say that Dr Ramanan has had excellent results with many patients, but as with all programs that require the use of drugs, some people will have side effects that prevent them from continuing the drugs. The only way you will know is to try. If the children cannot tolerate the therapy, then they should resume transfusion.

I feel that I must also mention that Dr Ramanan's success has led to other doctors using the same or similar therapy. These doctors include Dr Chandy, one of the more prominent thalassemia doctors in India.

POAR:
Thanks Andy. We are planning to start the therapy. As we are moving to new way we were little concerned, your words will help.
:)

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