Dr Ramanan in Pune

Dr Ramanan's reply.

Dear Andy,
I would like to clarify that we continue chelation for all children.
the response is variable depending on time of transfusion.
My patients who responded have been hounded. Majority of responders are silent.
i will share a paper once its published at our national conference this year in November.
I have no ulterior motive in making Thalassaemics take hydroxyurea or some cholorophyll filled stuff.
I dont need this as my bread and butter is Bone Marrow and Stem cell Transplant NOT Hydroxyurea +/- Wheatgrass.

Chelation should be continued. I used to ask them to stop for a short period as there were too many tablets to consume. For your kind information 90% of patients DON'T start chelation at Ferritin of 1500 and neither do they continue regularly. It was for practical reasons and COST too that i HAD recommended. I have stopped making recommendation. The Hb of 6 gm% came to me as an idea when i was treating JS. i have some idea but there is no documented paper on my thoughts.

I feel that there is much misunderstanding about Dr Ramanan and that there have been many rumors spread about his work that were based on honest misunderstandings of his methods. I have asked Dr Ramanan to feel free to use me as an intermediary for any messages he wishes to share with us, as he has understandably become wary of social media. I think some things that have been done out of necessity have been misconstrued and that the doctor has been refining his methods as he observes results.

I feel that some confusion has risen due to Dr Ramanan's individual approach and assuming that what he instructs one patient is the same for all. This is not the case, as the doctor tries to manage each patient according to both financial status and the patient's ability to manage compliance. He has to deal with the reality each patient brings to the table and having a one size fits all approach is not productive with individuals, who may or may not be able to afford all that is required or cannot fully comply with treatment at the present. I respect this individual approach , but feel I should point this out so we are aware of how the doctor works with individuals.

I also realize that the doctor's apparent self promotion turns some people off, but I also am quite aware of how important self promotion can be when trying to reach those who need help, so I will not criticize the doctor for marketing techniques that I also use.

Dr Ramanan's reply.

I feel that there is much misunderstanding about Dr Ramanan and that there have been many rumors spread about his work that were based on honest misunderstandings of his methods. I have asked Dr Ramanan to feel free to use me as an intermediary for any messages he wishes to share with us, as he has understandably become wary of social media. I think some things that have been done out of necessity have been misconstrued and that the doctor has been refining his methods as he observes results.

Dear Andy,

I don't know about misunderstanding much - I got the information directly from the parents who spoke with Dr Ramanan. They were both advised what I have outlined. The Medical Director of our TX centre also spoke with him, at the request of one of the parents - and he said exactly the same thing to her.

Why would anyone want to spread rumours about him? And, his patients have been hounded? By whom? And, why? If his treatment works and the provides the same or near same quality of life ex-transfusions, I would be the first to stand in line at his doorstep.

I only got involved in this whole thing because the mother of this thal child called me in shock, asking for advice, since the father was quite keen to try the treatment - and her common sense was telling her not to go for it.

Our goal at our centre on iron chelation is to get Ferritin levels below 1,000 and then below 500. We now have two other people at the centre, besides me, with Ferritin levels in the normal range. He told our medical director that he wanted chelation stopped because he did not know how hydroxy would work in conjunction with exjade/kelfer - hence, stop the latter. Which is a fair comment, if not for the huge risk in stopping chelation.

And, as far as money/treatment is concerned, these two thals are on the best possible treatment currently - transfusions, chelation, supplements and regular tests. The older thal, a youth aged 24 years, has turned his life around completely since he started to comply with this regime over the past 3 years.

So, yes, I was quite peeved with the suggested treatment of Dr Ramanan.

Poirot

He has to deal with the reality each patient brings to the table and having a one size fits all approach is not productive with individuals, who may or may not be able to afford all that is required or cannot fully comply with treatment at the present. I respect this individual approach , but feel I should point this out so we are aware of how the doctor works with individuals.

I also realize that the doctor's apparent self promotion turns some people off, but I also am quite aware of how important self promotion can be when trying to reach those who need help, so I will not criticize the doctor for marketing techniques that I also use.

At our thal centre, which I am confident is now the best in the country with a really caring Medical Director in charge, we do try to counsel and insist on a standardised care protocol for everyone - we try to inculcate compliance with the protocol, instead of trying to modify the protocol because a child is not complying. The success we have had with younger thals and their growth is just heart warming in this respect.

For patients who can not afford the care, in our centre at least, we now have tie ups for free chelation for poorer patients. Supplements still have to be paid for though - so we prescribe the minimum that they can afford. As parents see the difference in their children with the protocol, compliance actually improves and they actually try and do the best they can. Their apathy falls away.  Blood is virtually free at the centre - although that is now causing the centre financial hardships, and we have to figure out a way to fund raise a corpus - and it is safe blood, which is a major concern in India.

I have always been willing to try new stuff for my care/treatment - I would sign up for the new gene trial like a shot, if they would have me - but it should not militate against common sense and the risk-reward ratio has to be really favourable. From what I have heard to date, it is not in the case of Dr Ramanan's treatment with hydroxy.

I look forward to reading his peer reviewed paper on his treatment - hopefully he will publish it soon.

Thanks

Poirot

I would be out of order if I didn't mention this:

Our standardised care protocol borrows heavily from all the information and advice on this group- so, many, many thanks to Andy and all the contributors.

You make a difference far beyond your own worlds!

Cheers

Poirot

Dear Poirot,

I am not agree with the points outlined by you.

I have a different opinion here as i also know two thals who are Ex-transfusion with the help of Hydroxyurea and Wheat grass treatment suggested by Dr Ramanan Sir.

They are chelating, taking supplements.

Hello all members,this is inform you all that i was taking blood tranfusion till 2012 but now i am cured by dr.Ramanan in pune BY USING HYDREA and wheat grass.I have not taken blood tranfusion for last 16 months my hb is around 10gms .before visting dr.ramanan i had visted many doctors in india thsi doctors are top most doctors in india for thalassemia they never told me or advice any other treatment then blood tranfusion and chelation.as i am working wiith with thalassemia society of pune as committee member i know many patients in pune who have benfited by hdrea and wheat grass treatment.In pune there are around 70 patients who are benfited by dr.ramanan treatment of hydrea. this patients are of all ages .My reports of moleular studies show that i am thalassemia major still i am benfited by this treatment.

Hi Jatin,

are you beta zero thal major??
My son is E-beta thal, beta gene IVS 1-5 G-C.He is taking hydrea from 3.5 yrs. now he is 7 yrs old.I dont know whether it is giving any advantage or no but still we are giving.



regards,
Dip

I would very much like to hear from more of Dr Ramanan's patients, whether the reports are positive or negative. I don't think it does a service to any of us to have doubts persist about the doctor, so if anyone has personal experience with Dr R, please either post here or message me if you prefer to keep your comments private. I have heard good reports from Jatin and one other who no longer transfuses, but this is a very small sample. Can we hear more from others? I would also like to hear from others who have experience in his bone marrow transplant program. This is very important, as Dr Ramanan has garnered much attention and obviously, there are still questions about his work. We would love to clear the air so everyone can have full confidence in their choices of doctors.

I will also continue to urge the busy doctor to publish results for both programs. I know it is very time consuming, but it would be a worthwhile endeavor.

I would very much like to hear from more of Dr Ramanan's patients, whether the reports are positive or negative. I don't think it does a service to any of us to have doubts persist about the doctor, so if anyone has personal experience with Dr R, please either post here or message me

I agree entirely with this approach, Andy.

This is the first that we have heard from Jatin here, and this is his very first post, too.  Welcome, Jatin!
So, it would be good if you share your history with us, Jatin - I have never heard of 10gms being maintained even by Intermedia on Hydroxy - so, your results are breath taking.


Maybe, there is a particular genotype that is helped really well by Hydroxy - and we do not know that and these are the first test results.

It would be great if Dr Ramanan would consider presenting his results at the upcoming TIF conference at Abu Dhabi - if he does not have the time to get his paper published shortly.


Dharmesh,

Are these patients based out of Ah'bad/Rajkot?

I do hope that Jatin will post more data.

Thanks

Poirot

Dear Poirot

No.

Both are from Pune. One of them is JS.

I met Dr Vijay r on 2nd August 2014 in a public conference .I personally found him very confident abt hydroxyurea treatment for thallasmia major who recived their first transfusion after 12 months or more
Secondly he is also confident for cbt or bmt with 4/6 hla matching
As I am expecting baby this month and planned to preserve cord blood ,I will meet him for consultation very soon if hla matches
But I want to tell one thing that only  after meeting him ,I became optimistic and made up my mind to plan for cbt  in near future inshallah 
Allah knows the best and everything

he is a great doc!!

I met him personally got an aggrressive and v.much needed treatment.
he also prescribed me chelation (combo of two oral chelator) with hydrea and wheatgrass

We are still awaiting for Dr Ramanan to publish his paper, detailing his success with Hydroxyurea.
I remember him posting that this would be in November, last year.

Meanwhile, there was also a Thal event in Ulhasnagar (an extended suburb of Mumbai) a couple of months back, where both Dr Ramanan and Dr M B Agarwal were part of the panel, advising Thal patients. Dr Ramanan's proposed treatment came under great scrutiny - and he presented his success story, Jatin, in person - on being gently questioned by Dr Agarwal, it came out that Jatin was Thal Intermedia, and not Beta Zero or even E-Beta.

So, pls do be careful about this whole hydroxyurea thing - there is no documented evidence that it helps Thal Majors in any way.

Poirot

One ppt file has been uploaded by Dr Ramanan on his own website with reference to hydroxyurea.