Temporary closure of LML

Dear All,

I am sorry to communicate that the leprosy mailing list will be temporarily closed. It will be operating again by the next August or September.

Thank you very much to all of you,

Salvatore

Reactions after stopping Multi-drug Therapy

Leprosy Mailing List – May 16^th, 2010

Ref.: Reactions after stopping Multi-drug Therapy
From: R Ganapati, V V Pai and M Shinde, Mumbai , India

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Dear Dr Noto,

We invite the attention of LML readers on the exchange of views on the role of clofazimine in preventing leprosy reactions after completion of fixed duration multi-drug therapy (FDT) with 24 and 12 months. An analysis on a large scale on the pattern of reactions in 2.307 leprosy patients attending Bombay Leprosy Project since 1981 is in progress.

We present our preliminary observations focused only on reactions after termination of treatment with FDT-24 months and FDT-12 months. Those who presented with reactions before treatment were excluded. The statistics relating to the reactions encountered during the course of treatment were not considered for this particular analysis, as the object was to see if there is an advantage of clofazimine, if administered for a longer period.

Reactions after termination of treatment

FDT- 24 Months

No. of pts	Reactions
	No.	%
493	5	1.0

FDT- 12 Months

No. of pts	Reactions
	No.	%
1757	60	3.4

The greater proportion of reactions in the group not receiving clofazimine for a longer period may be ascribable to the non-availability of the reaction-suppressing effect of this drug. Most of the reactions were observed within a year of stopping treatment.

Regards,

Dr R Ganapati, Dr VV Pai and Mahendra Shinde,

Bombay Leprosy Project

Mid Term Conference of Indian Association of Leprologists, 2nd & 3rd October, 2010, Guwahati Assam India

Leprosy Mailing List – May 16th, 2010

Ref.: Mid Term Conference of Indian Association of Leprologists, 2nd & 3rd October, 2010, Guwahati , Assam , India .
From: K S Swapan, New Delhi , India

Dear Dr. Salvatore Noto,

Please be kind enough to circulate the First Information Brochure of the ensuing Mid Term Conference of Indian Association of Leprologists to be held in Guwahati , Assam , India on 2nd & 3rd. October, 2010.

Regards,

Swapan K Samanta

Hon Secretary, Indian Association of Leprologists

“Diagnosis of leprosy” also available on line in the “Portal da Hanseniase”

Leprosy Mailing List – May 17^th, 2010

Ref.: “Diagnosis of leprosy” also available on line in the “Portal da Hanseniase”
From: Carlos A. F. Rodrigues, Passos, MG, Brazil

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Dear Salvatore and Pieter,

Your paper “Diagnosis of leprosy” is now freely available (text and slides) on line in our website: “Portal da hanseniase”. Its internet address is www.fespmg.edu.br/hanseniase

Link: ”biblioteca digital” and inside that click on the link “Manuais”.

Thank you very much for making available such a rich material.

Carlos A. F. Rodrigues

Portal da Hanseníase

Dr. Carlos Alberto Faria Rodrigues

Núcleo de Assistência Ensino e Pesquisas em Hanseníase

Portal da Hanseníase

www.fespmg.edu.br/hanseniase

Loose clofazimine availability in The Philippines and in Gabon

Leprosy Mailing List – May 11^th, 2010

Ref.: Loose clofazimine availability in The Philippines and in Gabon .
From: 1. F. C. Gajete, Manila, The Philippines. 2. A . Mondjo, Libreville , Gabon

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Dear Dr Noto,

Philippines have been receiving loose Clofazimine (100mg and 50mg capsules) for the past years from WHO Geneva free of charge for the treatment of ENL reaction. However, it is not a regular allocation and distribution depends upon the availability of the drug from the donor, Novartis. We were informed we will soon receive our request from the fund of Neglected Tropical Diseases by Mr Steve Lyons, NTD, WHO, Geneva .

Dr Francesca C. Gajete, MHA
National Programme Manager
Leprosy Programme
Philippines

______________________________________________________________

Dear Dr Noto,

Loose Clofazimine is available in Gabon for the treatment of ENL reaction. The programme receives it from WHO free of cost since 2007. Usually our official annual command of Clofazimine is send by Ministry of Health to the local office of WHO that handed it over to Mr Lyons in Geneva .

Best regards,

Annick Mondjo
National Leprosy Programme
BP 50 Libreville
Gabon

Clofazimine for ENL in pregnancy

Leprosy Mailing List – May 10^th , 2010

Ref.: Clofazimine for ENL in pregnancy
From: E. Duncan, Peebles , Scotland , UK

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Dear Dr de Koning,

I refer to your LML message dated 02/05/2010. Thank you for your concern. I too have been very concerned about the availability of Clofazimine.

I have been working in Ethiopia [ALERT] for many years initially with the Medical Research Council (MRC) in 1975-8, and up to 1991 and more recently under AHRI with the cohort study [A9] of mothers with leprosy and their babies [now aged mid-thirties]. With the MRC we used a lot of Clofazimine not just for erythema nodosum leprosum (ENL) reaction, but for people who had dapsone resistance, and for those with severe and prolonged nerve damage/neuritis.

On one of the last follow up assessments of the mothers I saw one of the mothers who at age 16 was one of the youngest admitted to the study who had very severe ENL with neuritis during pregnancy, who for the sake of the unborn baby could not be treated with high dose steroids, and instead had long term clofazimine. She had the most wonderful long term results with beautiful hands and feet and no nerve function deficit.

I will be interested to hear of how you get on in your searches ...

Best wishes,

Elizabeth Duncan

Feeding 25 mg dose of clofazimine daily to a 2 year baby

Leprosy Mailing List – May 10^th , 2010

Ref.: Feeding 25 mg dose of clofazimine daily to a 2 year baby
From: H K Kar, New Delhi , India

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Dear Dr Saba,

I refer to your message dated May 9^th, 2010. Your problem of feeding 25 mg dose of clofazimine daily to a 2 year baby is a genuine concern due to non availability of 25mg capsule as well as liquid preparation. The drug is not water-soluble, hence micronised crystals are suspended in an oil-max base and encapsulated in soft gelatin for oral administration. The absorption in this form is even only 30% to 50%.

As suggested by other LML members, you can feed 50 mg weekly twice. The soft gelatine capsule can be punctured and the oil-wax based clofazimine can be expressed from the capsule into a half teaspoon full of honey which can easily be fed to the baby twice a week, same way the monthly pulse dose also.

Regards,

Dr (Prof.) H K Kar
Consultant & HOD
Department of Dermatology, STD & Leprosy
P.G.I.M.E.R. and Dr Ram Manohar Lohia Hospital
Baba Kharag Singh Marg
New Delhi-110001

Multi-drug therapy (MDT) dosages in Ethiopian guidelines

Leprosy Mailing List – May 10^th , 2010

Ref.: Multi-drug therapy (MDT) dosages in Ethiopian guidelines
From: E. Kebede, Addis-Ababa , Ethiopia

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Dear Dr Naafs,

Thank you for the clarification (your message dated LML May 9^th, 2010). I have attached, herewith a PDF file from the National (Ethiopian) guidelines on leprosy management in adults and children. In the document are reported the dosages we recommend.

Best regards,

Dr. Eshetu Kebede

Director of Training Division

ALERT

E-mail: leprosytb(at)ethionet.et

Tel. +251 11 321 13 41/51

Fax: +251 11 321 13 51

Clofazimine availability and distribution

Leprosy Mailing List – May 10^th, 2010

Ref.: Clofazimine availability and distribution.
From: E. Post, Amsterdam , The Netherlands

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Dear all,

I have been following this discussion for many years now, and with growing irritation. As we all know loose clofazimine is available from the WHO when ordered by the national leprosy control programme manager, or whatever person responsible for leprosy control at the national level.

It is more than clear (for at least for about 7 years clear for me!) that the distribution system as it is organised by WHO is not functioning and not reaching the field and above all not reaching the patients who need it. In effect, differences of opinion between high placed burocrats in the leprosy world leaves the leprosy patient with recurrent ENL in the cold. Often it is because WHO does not take orders from the field seriously and only a fraction of what was ordered is then delivered. From my own experience in Indonesia I know that for some provinces a meticulous registration system for ENL reactions was in place, realistic orders were made by the national unit to WHO, but then in the end this was not honoured by WHO. Very frustrating. Other experiences are that one or the other ILEP member is ordering clofazimine, and has given up hope for supplies through government-WHO.

It is commendable that ILEP organisations fill this gap. But... at the same time I find it very disappointing that WHO has in all those years not been able to organise this distribution system appropriately. ENL can have very disabling effects. With the current global policy being geared towards prevention of disabilities, I think it should be a matter of honour for WHO to get clofazimine distribution well organised within a short time, without too many expensive consultations.

I would challenge the global leprosy programme to react constructively on this issue on the Noto list, and not keep silent again. For the good order: this mail was copied to those responsible.

Many regards to all,

Erik Post

Royal Tropical Institute, Amsterdam

PHARE BELGIUM is planning to produce loose clofazimine very soon

Leprosy Mailing List – May 9^th , 2010

Ref.: PHARE BELGIUM is planning to produce loose clofazimine very soon.
From: E Declercq, Brussels , Belgium

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Dear Salvatore,

I refer to Dr de Koning’s request about availability of loose clofazimine for the treatment of erythema nodosum leprosum (ENL) reaction.

PHARE (Patrick Swolfs; e-mail: ps@phare.be ; tel: 00 32 3 880 87 70) is planning to produce loose clofazimine very soon from now. They had produced it in the past, but had stopped their production due to lack of orders. Now that a number of requests has come, they have decided to start the production again. Although this production might not be on a continuous basis, it is probably still possible to send them orders in the coming days.

Best regards,

Etienne Declercq

Damien Foundation Belgium

MDT in a 2 year old child

Leprosy Mailing List – May 9^th , 2010

Ref.: MDT in a 2 year old child
From: I. Kahawita , Sri Lanka

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Dear Saba ,

ILEP Guidelines advise to give daily dapsone 25mg (the halved 50mg tablet as Dr Naafs has suggested) and clofazimine 50 mg twice weekly. I Hope this will be of use.

Yours sincerely,

Indira Kahawita

MDT in a 2 year old child

Leprosy Mailing List – May 9^th , 2010

Ref.: MDT in a 2 year old child
From: B. Naafs, Munnekeburen, The Netherlands

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Dear Dr Saba,

The dapsone tablet can be halved, if each halve contains slightly less it does not matter. Clofazimine is '"stored" in the adipose tissues. I would give each alternate day a clofazimine capsule.

With kind regards,

Dr Ben Naafs

ex-ALERT

Small child MDT - please advise

Leprosy Mailing List – May 9^th , 2010

Ref.: Small child MDT - please advise
From: Saba Lambert, Addis Ababa , Ethiopia

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Dear LML members,

I would be grateful if you could advice me on a case I have come across at ALERTHospital in Addis Ababa , Ethiopia .

The patient is a 2 year old child, weight 9kg, brought it for a check up by family. The father was diagnosed as a lepromatous case 7 months ago at our clinic with BI: 5,5,5. He is on his 7th month of MDT. They live in a rural environment about 8 hours travel from Addis.

The child was found to have a few nodules on the face, arms and buttocks. Her BI is 3,2,1.

The problem I have is with the treatment to give her. We have no low does medication inEthiopia and depend on the WHO packs of MDT (adult and child 10-14). For her 9kg she would need a monthly dose of Rifampicin 150mg, Clofazimine 25 mg and Dapsone 25mg, and a daily dose of dapsone 25mg and every other day dose of clofazimine 25mg. Form the child MDT pack, we have Rifampicin 150mg available but the dapsone and clofazimine come only in 50 mg tablets and blisters respectively.

Would you have any suggestions of how I can adjust her treatment?

I am grateful for you suggestions.

Dr Saba Lambert

Diagnosis of leprosy - Part III. Text and slides

Leprosy Mailing List – May 7th , 2010

Ref.: Diagnosis of leprosy - Part III. Text and slides
From: S. Noto, P. A. M. Schreuder



Dear LML readers,

Please find herewith enclosed Part III of “Diagnosis of leprosy”.

Best regards,

Salvatore Noto and Pieter Schreuder



Salvatore Noto, Genoa, Italy: salvatore.noto(at)hsanmartino.it
Pieter AM Schreuder, Maastricht, The Netherlands: impieter(at)hotmail.com


Diagnosis of leprosy - Part III. Text - in PDF - in Word
Diagnosis of leprosy - Part III. slides - in PDF - in Powerpoint

Diagnosis of leprosy - Part II. Cardinal signs – SLIDES -3

Leprosy Mailing List – May 6th , 2010

Ref.: Diagnosis of leprosy - Part II. Cardinal signs – SLIDES -3
From: S. Noto, P. A. M. Schreuder



Dear LML readers,

Please find herewith enclosed the slides related to the 3rd cardinal sign.

Best regards,

Salvatore Noto and Pieter Schreuder



Salvatore Noto, Genoa, Italy: salvatore.noto(at)hsanmartino.it
Pieter AM Schreuder, Maastricht, The Netherlands: impieter(at)hotmail.com


Diagnosis of leprosy - Part II. Cardinal signs – SLIDES -3 - in PDF - in Powerpoint

Diagnosis of leprosy - Part II

Leprosy Mailing List – May 5th , 2010

Ref.: Diagnosis of leprosy - Part II
From: S. Noto, P. A. M. Schreuder



Dear LML readers,

Please find herewith enclosed Part II. of “Diagnosis of leprosy”. Some of the slides related to this section (those regarding the 3rd cardinal sign) will follow with the next LML message. All comments and contributions will be appreciated.

Best regards,

Salvatore Noto and Pieter Schreuder



Salvatore Noto, Genoa, Italy: salvatore.noto(at)hsanmartino.it
Pieter AM Schreuder, Maastricht, The Netherlands: impieter(at)hotmail.com



Part 2 slides 1 - in PDF - in Powerpoint

Part 2 slides 2 - in PDF - in Powerpoint

Part 2 text - in PDF - In Word

Loose clofazimine available for the treatment of erythema nodosum leprosum (ENL) reaction via WHO

Leprosy Mailing List – May 3rd, 2010

Ref.: Loose clofazimine available for the treatment of erythema nodosum leprosum (ENL) reaction via WHO
From: Chris Schmotzer, Rawalpindi , Pakistan



Dear Dr. Noto,

This is in reply to Dr. Pieter de Koning's letter (LML May 2nd, 2010). The NLCP of Pakistan is getting loose Clofazimine for the treatment of ENL reaction from WHO free of cost since a number of years.

I would like to suggest to contact Dr. Steve Lyons at WHO Geneva (e-mail address: lyonss(at)who.int) and discuss the matter with him.

Kind regards,

Dr. Chris Schmotzer
Rawalpindi , Pakistan

Can loose clofazimine be made available for the treatment of erythema nodosum leprosum (ENL) reaction?

Leprosy Mailing List – May 2^nd, 2010

Ref.: Can loose clofazimine be made available for the treatment of erythema nodosum leprosum (ENL) reaction?
From: Pieter de Koning, Würzburg, Germany

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Dear Sirs,

We regularly get questions from our staff in the field regarding the availability of loose clofazimine (or lamprene 100 mg caps and 50 mg caps) for the treatment of ENL reaction in leprosy. Clofazimine in high dosage (sometimes in combination with prednisolone) is recommended by WHO for those cases not responding to prednisolone alone or those cases where prednisolone is contra-indicated.

There used to be a time when loose clofazimine was available for this use (from CIBA GEIGY, now NOVARTIS) and provided free of charge by WHO. Nowadays it seems it is no longer available, although still recommended in (inter-)national guidelines. Field workers therefore revert to not using clofazimine for ENL at all or misusing MDT blister-packs by extracting the 50 mg clofazimine capsules from the MB blister-packs and discarding the DDS and rifampicine or using it for other purposes. Surely this cannot be an acceptable state of affairs.

Therefore my question is whether loose clofazimine can be made available again and what are the steps to be taken (who to approach?) in order to procure it.

Kind regards,

Dr. Pieter de Koning, MD, MPH

Medical Advisor

Deutsche Lepra- und Tuberkulosehilfe e.V (DAHW)

Mariannhillstraße 1c, 97074 Würzburg

Telefon: ++49 (0)931 7948-113, Fax: -160

E-mail: pieter.de-koning(at)dahw.de

Diagnosis of leprosy - Part I

Leprosy Mailing List – April 30th , 2010

Ref.: Diagnosis of leprosy - Part I.
From: S. Noto, P. A. M. Schreuder



Dear LML readers,

Please find herewith enclosed Part I. of “Diagnosis of leprosy”. All comments and contributions will be appreciated.

Best regards,

Salvatore Noto and Pieter Schreuder



Salvatore Noto, Genoa, Italy: salvatore.noto(at)hsanmartino.it

Pieter AM Schreuder, Maastricht, The Netherlands: impieter(at)hotmail.com

ATTACHMENTS

attachment 1 Text - in Word format - in PDF format

attachment 2 - slides - in Powerpoint format - in PDF format

Diagnosis of leprosy

Leprosy Mailing List – April 29^th , 2010

Ref.: Diagnosis of leprosy
From: S. Deepak, Bologna , Italy

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Dear LML readers,

I have the pleasure to introduce you to a joint effort by Bernard Naafs, Salvatore Noto, Enrico Nunzi, Pieter Schreuder and with an important input from Grace Warren, about "Diagnosis of Leprosy". This work will be presented through the Leprosy Mailing List (LML) in the coming days. It will also be freely accessible through the archives of LML on internet.

Over the last two decades, the global leprosy situation has changed significantly. During this period, there has been a lot of attention directed towards the public health aspects of leprosy control and relatively less attention towards the clinical aspects of the disease. At the same time, clinical expertise about leprosy is slowly declining, and many young clinicians find difficulty in attaining access to reliable information about the clinical aspects of the disease. Hopefully this initiative will help in supplementing the role already played by LML in sharing information and knowledge about leprosy.

Today e-mail and internet based information has changed the way of collecting, disseminating and sharing information. Persons who read the texts have the possibility to intervene, comment and share their own experiences. Thus your reactions to the text and slides will play a vital role in enriching and improving them.

With this message, you will find the index of different chapters that will be circulated through LML.

With best wishes,

Sunil Deepak

Disability and Development

Leprosy Mailing List – April 18th, 2010

Ref.: Disability and Development (D&D) course
From: Huib Cornielje, Alphen aan den Rijn, The Netherlands



Dear Salvatore,

Could you please be so kind to publish the attached information.

With kind regards,

Huib

Huib Cornielje
Enablement
Langenhorst 36
2402PX Alphen aan den Rijn
The Netherlands
Tel: 0031-172-436953
Mobile : 0031-6-28485083
Fax: 0031-172-244976
e-mail: h.cornielje(at)enablement.nl
internet: www.enablement.nl and www.cbrtraining.com

Indeterminate (I) leprosy

Leprosy Mailing List – March 28^th, 2010

Ref.: Indeterminate (I) leprosy

From: Grace Warren, Sidney , Australia

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Dear Salvatore,

Indeterminate leprosy is the very earliest form of leprosy in which the first signs of inflammation are evident but, the disease is only just becoming established. By the time the first indefinite vague edged lesions can be seen there is still only mild inflammation in the tissues and many good pathologists are even hesitant to make a diagnosis on the pathology. Which from the name is still INDETERMINED as to which type of disease is developing. In fact a number of senior pathologists will only make a positive diagnosis if they detect some acid fast bacilli (AFB) in the biopsy.

A slit skin smear examination rarely shows the bacilli which are relatively rare. If bacilli are easily found in a slit skin smear it is already determined.

In Indeterminate leprosy the earliest lesions are merely dyschromic. They can be pinkish is a true light skin or light in colour on a pigmented skin. They do not hurt and there is no detectable sensory abnormality or pain or itch. There may be one only or many lesions.

Diagnosis is often a result of suspicion and every dyschromic lesion in an endemic area should be looked at carefully. The whole body must be examined and all nerves palpated; though if any nerve is enlarged it would probably cancel indeterminate.

A biopsy may show some inflammation but, as said before, if AFB cannot be found a positive diagnosis of leprosy cannot be made.

Grace