Leprosy
mailing list – October 20th, 2006
Ref.: Treatment
of ENL reaction.
From: Warren G., Sydney,
Australia
October 14, 2006.
Dear Salvatore,
I have been "off line" for a few weeks
but am interested to catch up on the problem of ENL, especially as I have been
dealing with exactly the same problem on the opposite side of the
world- East Asia.
In dealing with ENL we need to remember
that ENL may occur without treatment at all and is often the reason
for the patient coming for treatment in the true LL. This is especially so in
the Lighter skins as in the Chinese in whom there are many diffuse
lepromatous type LL patients who can have an extremely high BI and yet
have No obvious skin lesions and no loss of sensation, so according to
WHO protocol they do not have leprosy and a number have been turned
away without treatment until they come back with obvious ENL, and far
advanced leprosy- which could have been controlled years earlier.
Having worked with Chinese for many years
I know that in most cases there is some other medical abnormality that
triggers the clinical ENL- we know that the vasculitis of ENL is
due to the deposition of the large antigen=antibody-complement
molecule in the small blood vessels. What is fascinating is that many
patients carry dead bacilli and high levels of antigen for years and
never show ENL. Why does
it suddenly start to combine with compliment and produce clinical ENL? When a LL patients presents
with ENL it is urgent that we do find out as Dr Naafs has stated
(LML Oct. 13th, 2006) what intercurrent diseases the
patient has- unless we treat those diseases we are running a loosing
battle with treating ENL and if we give prednisolone we often just
mask the inflammatory response that is the ENL and allow the
intercurrent disease to develop further while the prednisolone
suppresses the bodies ability to cope with inflammatory responses to
other diseases as well as leprosy. Yes I have seen patients
given prednisolone for ENL and that masked the fact that tuberculosis
(TB) was running wild and the TB killed the patient as the
prednisolone of course encouraged it to spread.
It has to be remembered that prednisolone
does not cure the leprosy, it does not remove ENL, it gives the
patient a euphoria and makes him feel better but, unless the immediate
cause of the ENL is dealt with it will return as soon as the
prednisolone is reduced. I feel very strongly on this fact and
after working with hospitalised Chinese patients for over 15 years I
am convinced that the effect of the prednisolone is so strong on the
anti inflammatory ability of the body to cure leprosy that I consider
that we ought not to count the time on prednisolone in the
restricted duration of MDT that WHO recommends.
Yes, prednisolone makes the patient feel
good- he feels better and in many countries of the world the
patient is able to go and buy for himself over the counter more
prednisolone and he often does so.
Yes, I can count a number of deaths because this happened.
I have recently seen an 18 year old who
has literally been on prednisolone, up and down in dose levels for 5
years- since completing 18 months of MDT yet he still has, today, a BI
of 2+ and recurrent ENL when not on prednisolone in a dose of 15-20
mgms daily. What has that
prednisolone down to his whole development system and obviously the
MDT for 18 months some 5 years ago did not cure him- but as he was
given the prednisolone he went on taking it because he felt better on
it! When checking him he has lots of intestinal parasites. What else needs treating.
Yes, I could tell such stories all day! In short I am sorry but
WHO recommendations for prednisolone for ENL are not realistically
helpful to most patients. Yes
the doctor likes it because the patient feels good but, long term will
the patient be better or worse.
Also I agree with Dr Naafs. Please when you first see the
patient check out what else needs treatment and get on with that
initially. Dr Ahmad (LML
Oct. 12th, 2006) also accents looking for concomitant
disease.
For the well advanced LL/BL patient who
comes in with a history suggesting of ENL in the past before
commencing MDT I would be rather radical in that I would Not give a
full dose of MDT first visit as the rifampicin may send him into an
acute bout of ENL and then he may say- as I have heard often: “The
doctors medicine made me worse I am not going back there again.
We need to win his confidence! He
has probably been infectious for months or more likely years - it is
not going to really matter to those he is living with if his
infectivity continues slowly abating over the next few months, instead
of dropping dramatically. I
investigate Hb, parasites, look for TB and other things the
first visit. Check his
diet as many who eat rice as a staple are short of B1 which is all
removed when the rice is polished and is the patient adequately fed
anyhow?
If I can take a skin smear I
do- if not well I can often make an sensible estimate! Then give clofazimine (not
dapsone or rifampicin) iron vitamins, and other treatment
indicated and advice on diet and hydration (lots of patients get
ENL through dehydration as I often see in Ramadan in Muslim
countries).
Note that clofazimine is
bacteriostatic and bacteriocidal- not as dramatic as rifampicin but it
is also anti-inflammatory and if the patient is in a bad way,
give up to 300 mgms daily to commence.
But please explain about the pigmentation and to take it with
food etc. In the
initial trials with clofazimine it was very effective "curing
leprosy" without the other drugs and controlling ENL at the same
time.
I have found that 2-3 months of
"curing other ills and building up the anti-inflammatory level of
clofazimine will often allow the patient to then go onto for MDT
without problems and not require steroids.
The other thing also
mentioned by Dr Naafs is stress.
Any patient diagnosed as leprosy will be living with stress of
what is going to happen. I
have found that the use of "tranquilisers" is a big
help. I like
chlorpromazine best and there are some old articles in the American
Medical journals of the 1960s talking about the steroid like effect of
chlorpromazine. It
certainly helped us to get a lot of patients off steroids in the days
before clofazimine was freely available. Usually 50 mgms noct makes a
lot of difference- but in some of the really severe cases we
gave as much as 100 mgms four times daily. That produced a lovely level
with the patient sleeping most of the day but can feed himself toilet
and bathe himself etc- while we are improving his general health. Yes, check for liver function
if using chlorpromazine- and please remember that clofazimine has
virtually NO toxic side effects except for the pigmentation! Amazing! If you cannot
get chlorpromazine even simple phenobarbital is very helpful, as is
amytriptaline noct and meprobromate, though I personally have
not found diazepam so useful for ENL.
Time I stopped- I could say a lot
more- but please do not use steroids if not really
essential- many countries cannot use thalidomide and cannot
afford it either. I know
WHO may object to what I say but we are here to help the patients not
to stick to WHO criteria. Oh
yes, money is a problem but there are ways round that too, but please
do not kill the patient trying to get the WHO requirement of
elimination of leprosy! ENL
in LL/BL leprosy can last years we ought not encourage bad habits like
self medication with steroids and requiring drugs that are
difficult to get like thalidomide, if we can manage with using more
simple methods. Oh yes, I
use prednisolone for acute Type I reaction (reversal reaction) but
that is a totally different story and we may be able to prevent a
deformity or reverse one with correct use!
Hope this helps some who
are in difficult circumstances and trying to cope of small
budgets and lack of supplies of the more effective drugs.
With Kind regards,
Grace Warren
