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Thalassemia Patients and Friends and thalpal © A. Battaglia 2017

53707 Posts in 5641 Topics by 5625 Members
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 on: Today at 08:50:16 AM 
Started by jsbhavsar - Last post by jsbhavsar
Mid-June 2017 a CBC blood work was done with liver and uric acid.

Hb reached 10.4 g/dl now, hematalogist suggested to cut down folic acid dose to 5mg per day instead of 10mg per day
Uric acid is still hovering at 9.3, pain has now started reaching wrist joints, ankle joints, finger joints. Hematalogist suggested taking Allapurinol 100 mg per day, but I have not consumed any uric acid medication since 16th April.

SGOT and SGPT have reached near normal levels of 38 and 35.  What is disturbing is the Indirect Bilirubin continues to remain high at 6.25 (its come down from 6.98). Doctor said hemolysis is part of your cycle and indirect bilirubin will remain high".

Last few days Mumbai weather was excessive humid, my kidneys were not able to flush naturally inspite of water intake.
I feel that my kidneys have been overloaded in last 2 months due to excess hemolysis as I was taking folic acid 10mg per day.

Help on uric acid is hardly forthcoming from ayurveda and homeopathy from last 4 months.
At home I started consuming Flax seeds + sesame seeds mixture to control uric acid.
No major improvement.

As Andy stressed the importance of Vitamin E 400 mg per day, I have started taking the same since few days.

 on: Yesterday at 05:57:24 AM 
Started by sofear - Last post by Pratik
I just received this yesterday. Did a test and it reported 11. I had BT last Thursday. Pre-transfusion Hb was 9 so seems accurate. But we'll see as I will compare during next transfusion with lab reports. Nice little device and very convenient.

Now it is more important than ever for me to monitor my hb as I have started Dr. Ramanan's treatment and as I will need to let my hb drop, I'll have to keep a watchful eye.

Costed Rs 5000 ($78 approx) and Rs 1500 ($23) for 50 test strips.

Will keep you guys updated.

 on: June 19, 2017, 08:29:19 AM 
Started by Lokkhi maa - Last post by Lokkhi maa

Andy please advice...

 on: June 19, 2017, 04:28:14 AM 
Started by TKDgirl7 - Last post by TKDgirl7
Hi Andy,
I found out my son and I are beta-zero by doing 23 and me testing and loading the raw data into Promethease.  I tried looking up beta zero, but beta zero sickle cell kept coming up in my searches.  I'm mainly just wondering if there are any good articles I can read on this, and if there are any implications health wise for me and my son? 


 on: June 18, 2017, 11:26:10 AM 
Started by Pratik - Last post by Pratik
Jadenu is available here too.

 on: June 18, 2017, 06:16:11 AM 
Started by Pratik - Last post by Parin
I think its oral chelator and in India may be called by name Oleptis. Here in USA Novartis called oral chelator as a Jadenu

 on: June 17, 2017, 01:52:36 PM 
Started by dq - Last post by dq
Hello Andy,

I was wondering if you had any news, documents or sites relating to upcoming drugs.
I've looked into Lentiglobin and Luspatercept however do you know of anything else going on abroad and in the UK.  I understand something in the UK is going through phase 3 trials?

Cheers mate.

 on: June 17, 2017, 01:41:00 PM 
Started by dq - Last post by dq
Gwftan, a uric acid level of 504 ummol/l is firmly in gout territory. Not everyone will develop gout so you may be on of those that high uric acid doesn't affect. I hope that is the case as gout attacks are excruciating.

Remember gout takes many many years to develop (20+) so just keep an eye on any major joint pains in your feet and constantly raise the issue with your haematologist to keep him in the loop should you experience anything. Don't let the haematologist force convince you it can only be low hg as that is not true.

 on: June 17, 2017, 01:08:17 PM 
Started by asma - Last post by dq
I agree with Canadian Family.

As Andy asked about Wheat grass because it is must for Intermediate. Even when ur daughter is on hydrea it becomes a must must.
For boosting immunity Vit D & Vit C both are necessary. Coconut water can also boosts. It is tried and tested by me

It is a must for intermediate?  Why is that?

 on: June 17, 2017, 01:03:01 PM 
Started by dq - Last post by dq
Hello Andy,

I saw my haematologist again last week and raised JakaIf with hi again and he reiterated that it's only to be used in transfusion dependant thalassemics. As I have intermedia and do not have transfusions it won't really work. My haemoglobin runs between 7-8 but recently it's dropped and were investigating why. It could be that it was the allopurinol I was taking for gout suppressing the bone marrow as its metabolised in the kidney were EPO is created to stimulate blood production. We will get a clearer picture towards mid-July if things improve as I've been off allopurinol for about 2 weeks and I believe it could take weeks for haemoglobin to recover if it does?

He did mention a new drug in phase 3 trials for non transfusion dependant thalassemics but I can't remember the specifics. I think it's available somewhere on the UK thalasemmia society website in one of their publications.

Do you have any information about these new drugs?

Thanks mate.

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