The Carao Trial - How effective is it & who benefits most etc.

Thanks for your concern guys  We finally got desferal after one week,desferal availability is becoming an issue,i believe i hv told you guys earlier,that we don't buy packed desferal from novartis,the one we buy someone told us comes from Iran,there is a big difference in cost,if we buy through proper channel per vial costs 185 rupees,although the open one costs per vial 80 rupees,and thats a huge difference,there are lot of people who are buying this desferal,because so many of them can't afford packed desferal,i have seen parents with 4 thal kids,just try to figure out how would they even affore desferal let alone Asunra.

The cost of Asunra is another matter,but i assume that my daughter is very young and we won't have to use much larger doses,so we'll manage it.My worst fear is that what would happen if my daughter won't be able to tolerate Asunra,then we'll be bound to use desferal.Lets hope for best.

Zaini.

Hi Zaini,

I feel for parents with four thal major children.

I read your posts, you can start Asunra anytime at any level of ferritin. However, please make sure Zainab drinks lots and lots of water with it (please see my post in iron chelation board).

I do hops she tolerate Asunra well.

Thanks Canadian Family,

I have some concerns i am worried about,she spends almost half her day in school,what if any reaction happens there and she isn't unable to understand what's going on,and who'll remind her to drink lots of water there  .I just keep praying that everything will turn out fine.

Zaini.

Guys,

Not a very good news,my daughter will be tranfused tomorrow after 4 weeks ,and her pre transfusion hb came back 9.1.While last time it was 9.9 after 4 weeks.i know i said last time that we should wait for another transfusion before reaching any conclusion with carao,but i feel like i was expecting more then i should.i'll keep giving her carao,we have ordered 4 more bottles,so i am gonna finish them as they don't have any side effects,but let's see if it can make any difference again.Right now we'll have to go back to three weeks routine,with which my concerns were that if er transfusion requirement kept increasing l,ike that,soon she'll be on two week routine and i don't like the sound of it.Lets hope and pray for best.

A special thanks to Lloyd who gave us the chance to try this new product,it was very kind of you .

Zaini.

Dear Zaini,

I don't think that Zainab's transfusion requirement will be every two weeks, 9.1 is not too bad for 4 weeks.  Sometimes there is an element of error in blood tests.  A few weeks ago, when they were trying to lower little A's hg for a special test - after 6 weeks his first hg came back as 85 and two days later it came back as 90.  There is an element of error, so don't worry I am sure it will be fine:)  Keep doing the great job that you are doing, I honestly don't think that there is too much hemolysis going on or else her hg would be lower.  I hope that her hg is higher next month:)   to you and your lovely children:)

Love,
Sharmin

I too agree Zaini with Sharmin, you have to have an average of the pre transfusion cause sometimes there are many variables that affect the result of the tests

manal

Thanks Sharmin and Manal,

I am not discontinuing carao,i still hope that it might work for my daughter,it's just that i don't want her pre transfusion to be lower then 9.5,doctor has given us three weeks appointment this time.let's see if there is any difference in her levels next time.

Zaini.

Hi-

I was away for sometime and couldn't post. Here is the update on the Carao Use and results for my Daughter

1. Confirmation of delivery of the carao – Yes
2. Date when carao is begun – 9th Sep 2008 ( we had to stop after 2 weeks as she developed some kind of Nausea with Carao, we are planning to start again this month)
3. Dose given – 2 Teaspoon per day ( we tried with Milk, Honey etc but didnt work and she vomitted often)
4. Age and diagnosis of patient – 4 years(Thal Major)
5. Average hb before carao was begun (the last several blood test results, if available) – Between 8.5 and 10
6. Results of all hb tests done during or soon after the period of use of carao. Of course, the date of the test(s) must be included – 8.9 (8th Oct 2008)
7. Whether or not any other treatments were started during the period that carao was given - Hydrauxyurea
8. Any extra observations, such as observations on energy level and effects on the overall health of the patient – Nothing very significant

I think above result are not relevent as she was not on Carao for long, I will publis once we start again.

Regards -
Om

Thank you for the report Opkaram, I hope that carao proves to be helpful for your daughter and that she overcomes the nausea.

Best,

Sharmin

Hi, this is Lloyd, who sponsored the carao trial for thalassemia.

Opkaram, I'm afraid results for only 2 weeks use are not meaningful. 

Zaini, thanks for the detailed posts on results.  Many thanks also to Manal.  And thanks to Narendra, who I think is the only other participant who sent feedback.  I think Sharmin, who started months after the main group, will also post results.

Unfortunately, too few participants sent feedback to make any of the results useful.  I am very discouraged by the lack of cooperation of most of the 11 participants.

Although we do not have enough results to base any conclusions on, I will post my opinion.  I think carao will be be found to give only slight, if any, improvement in hemoglobin for thalasemmia major.  For thalasemmia intermedia, I think results will vary considerably, ranging from mild to moderate improvement.  For thalassemia minor, I still expect results to vary from moderate to dramatic.

We already know that carao fruit is effective for most all "iron deficiency" and "blood loss" anemia.  In the area of genetically-related anemia, my interest is now focused more on sickle cell anemia than on thalassemia.  This is because we have seen consistent, dramatic results for sickle cell disease (with 4 years of continuous clinical use in Nigeria).

PS For an example of what motivates my interest in carao for sickle cell, here is a letter I just received from a woman in Nigeria (16 Dec 2008):

Hi Lloyd,

My son is doing very well, i have no need to visit the hospital since after starting again on carao. His blood level is ok, there is less infection  and crisis.

Thanks very much, if you can still help me get in contact with the woman whom i can use her credit card to order for more because i need to have carao always with me. 

Best regards

Uche

(I have been in contact with Uche since last year.  She has agreed to answer any questions by email. More information: http://anemiaanswer.com/cgi-bin/lgssearch.cgi?query=uche)

The demand for carao has grown to the point that we are barely able to keep up.  My hope is to promote planting of carao trees, and local production of carao extract, in suitable places in the tropics, the primary goal being use for sickle cell disease.  There is already a non-profit project underway in India, with a clinic being built, and carao trees being planted.  Interested parties can write to the project chief, the social worker Rudradevananda (rudradevananda at gmail.com).  Those who are able, please consider sending your donations to Rudradevananda.  His email address (and Paypal account ID) is rudradevananda at gmail.com (spam prevention: replace 'at' with '@' and remove spaces).

Dear Lloyd,

I will have some results by Monday.  Soon after starting Carao my son had the noravirus so there was some interruption in taking carao other than that he has been taking it. 

1. Confirmation of delivery of the carao  -  October 23, 2008
2. Date when carao is begun - October 23, 2008
3. Dose given - 4 tsp with warm milk
4. Age and diagnosis of patient - 10 years, thalassemia major
5. Average hb before carao was begun (the last several blood test results, if available) - pretransfusion hg 90 - 100
6. Results of all hb tests done during or soon after the period of use of carao.
    Blood test results from November 24th
    Hemoglobin   101      110 – 157 g/L
    Hematocrit    0.28      0.34 – 0.46 L/L
    RBC      3.2               3.8 – 5.6 10E12/L
    MCV      87                75 – 91 fL
    MCHC      360
    RDW      16.7             11 – 16 %
    Platelet Count   355     
    WBC      5.9
    Neutrophils   2.8
    Lymphocytes   2.1
    Monocytes   0.5
    Eosinophils   0.0
7. Whether or not any other treatments were started during the period that carao was given - began B complex (50mg) October   
    25th.     
8. Any extra observations, such as observations on energy level and effects on the overall health of the patient - increased energy     
    level and positive mood change. 

My son has gone through some treatment this year that may also influence his results, however I will continue to post my observations and his lab results. 

Sharmin

Hi Lloyd
Sorry for the delay. I had no access to the net for the past three months. I am back now but probably lost too. I did post yesterday but that was probably not the relevant thread.
My son has been on carao for more than a year now. There has been no positive change on his hb. The last two months I was able to give him only half the daily dose as he had so many other meds and was forever throwing tantrums. Now I am back to giving him 2 tsp.
thankyou
maha

Lloyd,

My son had a blood test this morning.  His hg after 3 weeks is 91, a little lower than we had hoped to see it and we are hoping to see it improve for next time. He will be transfused tomorrow.   I will get the details of his blood test once I have them.

Sharmin

1. Confirmation of delivery of the carao  -  October 23, 2008
2. Date when carao is begun - October 23, 2008
3. Dose given - 4 tsp with warm milk
4. Age and diagnosis of patient - 10 years and 4 months, thalassemia major
5. Average hb before carao was begun (the last several blood test results, if available) - pretransfusion hg 90 - 100
6. Results of all hb tests done during or soon after the period of use of carao.
    Blood test results from January 5th, 2009
    hemoglobin 98

7. Whether or not any other treatments were started during the period that carao was given - began B complex (50mg) October   
    25th.     
8. Any extra observations, such as observations on energy level and effects on the overall health of the patient - his energy has been great during the last 3 weeks - but for a cold he got on Saturday.  He also has some fever and headache. 
   
Sharmin

Sharmin and Zaini,
Thanks very much for the feedback.  It is probably too early to come to conclusions, and too few case histories, but I think the results posted tend to support the theory I posted earlier: benefits for thal major from carao will be primarily improved energy level, with little or no improvement in blood values.

Based on results posted on this forum, and many reports I have seen of greatly improved energy levels for sickle cell patients and others long before blood values improve, I think carao may improve the body's transport of oxygen, allowing the body to make better use of its limited blood.

I am hopeful that thal minors and intermediates will see good improvements in blood values from carao.  Maybe someday we will have a real scientific study.