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Thalidomide + Hydroxyurea combination

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Andy Battaglia:
It may take some time and some experimentation with when the meds are taken to see if it can be tolerated.

nitarora:
Hi Keru my angel,

My experience I already shared on Dr. Ramannan therapy and Kindly start therapy with your kid along with extremely good diet plan along with pranayama & yoga..

It will work ..

If any further info reqd you can mark mail to me on nitin.28.arora@gmail.com, will discuss too if reqd..

BR//
Nitin

sanjuna:
Hi I am using this medicine for last 1.5 years, can good response also. my kid three years old, initial stage of treatment within 1st 6months, he got many times sick fever which makes me to stop medicine for couple of days, during that time his hb fall down to 4, take transfusion. once again continue with medicine his hd leads morethan 9. appx 9 to 10 months he was fine, no transfusion. once again continuesoly 2 months he was sick due to 3-4 times fever. which makes him so week hb dall down to 6.

but I cont... with medicine , feels good result.


I like to know any faced this type experience in between the treatment/ thereaphy reuires to take blood transfusion?

Andy Battaglia:
One bit of advice. If the child becomes sick or develops a fever, stop the meds until the illness is gone.

Eagle:
Hello Everyone!

I've been using Hydroxyurea for 3 months along with multivitamins, L carnitine, wheatgrass and kalonji. Pre Hydrea I was transfusing 3 washed packed cells every three weeks at a pre TX hb of approx 9. Ferritin was at 4k and I was using Asunra which was stopped as my sgpt level was 3x higher than normal. Hydrea was started when lfts came to normal ranges.

After using hydrea for a little over 2 months my hb started showing signs of improvement. But at the same time I started feeling overly weak and fatigued even at the hb of 8.5. To the extent that I start gagging when I walk and getting tired while brushing teeth. So I had my lfts and ferritin done. Lfts were 3 times higher than normal again and ferritin rose to 15000  :-\. My ferritin has never gone this high and it was quite surprising as I have had half the number of transfusions than i would normally have.

My doctor thought it could be a passing infection so he told me to get urine tests done which came back normal. Also during this time I was quite weak so had two packed cells transfused at an hb of 8.2 which should have brought my hb to around 10.2
 However when we checked HB after 4 days hb was 8.9 :-\. 1 whole bag of blood gone missing somehow. At which point the doctor tested for antibodies which came back negative.

Sorry for such a long story. But to conclude it.
1. Unexplained rise in ferritin
2. Unexplained drop in hb
3. Unexplained weakness even at hb of 9. Tachycardia. Muscle weakness. Lower back pain.

I've stopped hydrea for now and am waiting to get lfts done in a few days. In the meantime I have no idea what's going on. And I've stopped all supplements except wheatgrass and kalonji.

What should I do.

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