Dear all, new to this disease.

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Dear all, new to this disease.

Post by hevealm on Mon Feb 04, 2008 5:21 pm

Dear friends,

I'm a 38y/o Indian male from Seremban n just diagnosed last week. My lesions are on the scalp mainly and 2 smaller lesions on the right thigh. I also have shedding from the ears and around the nose. My derm gave me 2 topical lotions plus polytar shampoo for scalp. Just started using but feel the Beprogel lotion is stinging and makes my scalp dry. I am frustarated with this problem and hope to learn along the way with others in the same predicament.

Hope to hear from u all soon.

Take care,

Raj

hevealm

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Re: Dear all, new to this disease.

Post by Dom on Mon Feb 04, 2008 5:56 pm

Hi Raj,

Great to hear that you have found this forum. My name is Dom and I'm the admin here.

The first thing I'm going to say is that you are not alone. 2-3% of Malaysians have Psoriasis. 10% have the Psoriasis genes tho not activated. You can see that there are alot of Psoriasis patients.

However, not sure how many are on the internet

Very Happy

The 2nd thing I'm going to say is that we can fight this genetic condition of ours - using knowledge and preservation cheers

Before some of us on the forum can give input - please let us know if your dermatologist has diagnosed you as having localized psoriasis or systemic (entire body)?

The next question - do you know if it is plaque, guttate, etc?

Hope to hear from you.
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My type.

Post by hevealm on Tue Feb 05, 2008 5:30 pm

Dear bro,
Mine is on the scalp and at the last count i have 4 plaque type lesions on my body.( Hope the counts stays low!) My eyebrows are affected as well as my ear canal(outer).

Any suggestions for a good topical for the eyebrows n face? I hate to run to the mirror ever so often to remove the scales buildup.

Take care bro,
Raj.

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Re: Dear all, new to this disease.

Post by Dom on Wed Feb 06, 2008 10:23 am

Hi Raj,

Thanks for your email. While I am not a doctor, I suspect that the following should be your "fightpath":

(a) Check if your derm's strategy is to go on topical (outer skin remedy) control for a fix period of time to see if it works
(b) Should it not work - ask your derm if you will put on systemic medicine.

Just to share, I have had bad scalp psoriasis for 4 years or more. It has recently only been in control (1 spot left. 10-15 spots all over the scalp before Acitretin) when I have started soriatane/acitretin/neotigason (please google this for more info)

Systemic medicine is more powerful but also has greater risks and greater side effects. Different people react different to Soriatane/Acitretin


Hope the above helps.
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Scalp P.

Post by hevealm on Thu Feb 07, 2008 2:11 pm

Dear Dom,
Thanks 4 yr info, my next visit to the derm is scheduled on the 15th. Shall keep u posted on the feedback.

My condition is depressing as i am in the service industry and appearance is important.(Irony of it eh!)

Anyway, what do you do? How long have u had P and how did u manage to cope? Also i went to the Malaysian Dermatology website and why is ours not active? Any support groups in Seremban or do u know anyone in Seremban with P?

So long friend and take care.
Raj. (016-2871334)

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Re: Dear all, new to this disease.

Post by Dom on Fri Feb 08, 2008 9:33 am

Raj,

Great to hear from you again. Just a quick note before it slips my mind - with regards to working with derms, my personal point of view is per the following:

(a) Look for a derm that is open to new news and new practices. Some derms are not updated on the latest on Psoriasis. Perhaps they are not linked to the Psoriasis news network or not savvy with internet. Eg. My derm has a PC in front of his doctors desk and I know he checks his emails (from patients) and I also presume he surfs the net for info.
(b) He/She should understand that Psoriasis affects your emotional and physical condition (appearance) socially

I suspect that not all derms are well versed with psoriasis as there are so many skin ailments around. My logic would say that if a particular derm deals with many psoriasis patient and has good knowledge of psoriasis - he/she would also have a wide experience of different treatments he can administer or is even familiar with administering - given what we have in Malaysia compared to the USA for example with more "medicine options".

Example: I was seeing my derm for about 3-4 years before he decided to put me on systemic medicine. I suspect there was a misunderstanding that after he prescribed me topical meds, perhaps in his presumption he though I had gotten well for a period of time and then relapsed. Hence the periodic visits.

Not until one visit where I said "Doctor, I haven't been completely clear for 2-3 years since I started my visits with you" did I see his facial expression change and said - "ok, i think it is worth a shot you try systemic treatment".

With regards to your questions, I have prepared the following pointers (to my own knowledge):

(a) I work in an internet startup. 33 years old at present. Got P at 27.
(b) Coping with P these past years included = generating "hope" by visiting derm often (he allows his patients to drop by anytime, no need to fix appointment), family support, reading alot of internet updates on P including forums (UK/US), going to local Psoriasis Association, wearing long sleeve, avoiding food that triggers P and lastly - praying very hard!). The last 6 months have been very much easier with systemic medicine. Fingers crossed this will last! Eg. I am now wearing shorts sleeves and just joined the gym with my wife.

(c) The website is only active periodically. Dr Allan Yee (consulting derm with the Psoriasis Association) ran a very good awareness campaign called KULIT with a large pharmaceutical company. I suggest you sign up with the Psoriasis Association of Malaysia who has updates via postal mail periodically too. Please email to Eugene Cross (president) at crossec[at]hotmail.com

Since the website is not that active - I think such a forum at this one will act as the support site for Malaysians with Psoriasis. Some benefits include:

- You can be a Malaysian from anywhere in Malaysia geographically and still get to speak with other people
- You may not be able to make the physical face to face meetup for support and can do so from your internet terminal

I will see if Dr Allan will allow a link from the dermatology website to this forum. Will approach him when I see him next at the psoriasis meeting or try to contact him via email.

(c) Support group - to my knowledge, the only "physical" ie meetup via face to face support group

I know of is the Psoriasis Association in Malaysia. For those who know how to use forums and the internet - this is also a support group. I know of people who travel from KLANG to PJ or KL to attend the meetings. Though it will be difficult for people say living in Johor to come all the way for meeting. Maybe one day there will be live video conferences

If you look at the USA http://www.psoriasis.org - their internet forum is also a great support group. Do signup for their forum as it is a great place to learn about P. People on the forum share their treatment experiences ie what had worked for them and what had not worked.

Just for your info - we already have people in Malaysia using biologics but in very small numbers due to the cost. Maybe one day those Malaysians will discover the forum and share their experience with us. sunny sunny Very Happy
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Whew!

Post by hevealm on Fri Feb 08, 2008 7:43 pm

Dear Dom,

Thanks for sharing and i have e-mailed Mr.Eugene for more info on how to become a member.

Life is full of surprises and hopefully we shall all overcome our current condition in time to come.

My sincere CNY wishes to you.

Take care bro.

Raj

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Re: Dear all, new to this disease.

Post by mango on Fri Mar 12, 2010 4:49 pm

Hi dom and everyone ,

this is mango from malaysia. personally i don;t have any Psoriasis but my father have it for more than 22 years. Recently we visit the SKIN DOCTOR that we visit regulary and he gave my father this 2 new cream and oitment ( sorare and sorion ointment). After few day apply the cream and ointment, my father skin problem is getting worst and the ear and eye start swollen. Before that , the skin still under control and not that serious. As a daughter , i really feel horrible and sad that i cant do anything to ease the pain he have. I been checking with lots of doctor in malaysia, singapore, china and even europe. I really hope that you can give some advice or treatment/ cream for suggestion. He got a really serious P, whole body even face and nail. As u know this illness , after few weeks/months he will recover better and not that pain. I really hope you can help me!! I'm really worry about him . U can contact me thru email or phone. thanks juicy_mango@ymail.com

thank you

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Re: Dear all, new to this disease.

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