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 Rheumatologist for SLE Lupus, Please Help! =(

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TSbabybb
post Apr 29 2015, 04:02 PM, updated 11y ago

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Hi guys, wondering do you guys know any good rheumatologist in KL? My mum diagnose with SLE lupus. Seeing her itch for 24/7 really make me sad and hopeless. We currently seeing skin specialist at HKL but no good progress. Anyone here with SLE Lupus as well? How u guys deal with the terrible itchy? sad.gif

TSbabybb
post Apr 30 2015, 02:51 PM

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QUOTE(uglyduckling422 @ Apr 30 2015, 02:32 PM)
Can try sunway medical or UM.

Try use coconut oil. Or when bath use organic or dun use Any soap or shampoo for while. Just use water
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Thanks for the advice. Now been using shampoo for sensitive scalp and also soap for sensitive skin. All products are organic now. Costs are not little and we are not wealthy but for my mum health i don't mind fork out all my saving.

QUOTE(sah147 @ Apr 30 2015, 02:36 PM)
Please, please quickly go see any rheumatologist, the itchiness is a symptom, treat the underlying reasons first, before it spreads to internal organs.

The one at Tawakkal Hospital is good. The doc may suggest a round of treatment with some fairly strong intravenous drugs to "knock down" the over-active immune system.
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Thanks for the asvice. Actually my mum been having skin allergic for almost 5-6 years now. All this years we been seeing Dr.Chow skin specialist at pudu. He mention that my mum was having eczema and been treated her like other eczema patients but we didn't see any progress until some of our family friend suggested us to see skin specialist at HKL where they will run tons of test to diagnose you. So yr ago we went to HKL and that's only we know that my mum been diagnose with SLE Lupus. Been a yrs now seeing HKL but no good progress too. The medicine are the same every time we return for appointment.

So other family friends was suggested for a Rheumatologist. It's expensive but i have prepare for this. My mum health are more important than anything else in this world. I just wan to see my mum smile again that's all.
TSbabybb
post Apr 30 2015, 02:53 PM

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QUOTE(uglyduckling422 @ Apr 30 2015, 02:45 PM)
oh....@babybb do not simply give your mum eat medicine ya. One medicine good for this patient does not mean is can be taken by your mum. SLE everyone is different so better seek medication from doctor.
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Thanks! i will take note on that smile.gif
TSbabybb
post Apr 30 2015, 03:40 PM

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QUOTE(uglyduckling422 @ Apr 30 2015, 03:04 PM)
Yes pls go see Rheumatologist first to confirm whether she has SLE. Then can change to UM for cheaper and the doctor also quite good.

Can I know the organic shop name? and where to get it? Sunway Medical also Dr Chow but is a female. very famous but also pricey at Sunway Medical.
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My mum use this shower gel for bath which she claim can ease her itch for temporary:-

» Click to show Spoiler - click again to hide... «


While shampoo my mum just use baby shampoo as per advice by doctor:-

» Click to show Spoiler - click again to hide... «


As for lotion my mum use glove in a bottle which was good:-

» Click to show Spoiler - click again to hide... «


Mind if i'm asking are you having lupus as well?



TSbabybb
post Apr 30 2015, 05:23 PM

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QUOTE(uglyduckling422 @ Apr 30 2015, 05:10 PM)
the bath gel where to get?
Yes im having lupus. just knew it last year...
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You can get it at any pharmacy like guardian or watsons. Just use it once in a day when u you bath and leave it like 1-2 minutes before you raise with water. Are your lupus rashes itchy as well? Are you seeing rheumatologist now as well?

This post has been edited by babybb: Apr 30 2015, 05:25 PM
TSbabybb
post Apr 30 2015, 05:28 PM

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QUOTE(sah147 @ Apr 30 2015, 05:25 PM)
@uglyduckling422 the drug is cyclophosphamide (http://en.wikipedia.org/wiki/Cyclophosphamide)

Unfortunately SLE is is not easily diagnosed and most non-rheumatologists ascribe the symptoms to eczema, dengue, a lot of other stuff. There's a DNA test they can do to determine for sure if it's SLE or not.

You can just drop in and see the doc, and ask for the DNA/Anti-DNA test for SLE - they will draw some blood and you will get the results in a few days. Don't delay.
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That's what few years ago the skin specialist doctor told my mum that she was having eczema and prescribe medicine that treat eczema to my mum. Been on and off for few years and finally go to HKL for second opinion where they run few test to diagnose which include skin biopsy only knew it's a lupus.

This post has been edited by babybb: Apr 30 2015, 05:28 PM
TSbabybb
post Apr 30 2015, 05:30 PM

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QUOTE(uglyduckling422 @ Apr 30 2015, 05:28 PM)
Ok thanks
I go for rheumatologists at Sunway oredi. She say Im having SLE. Since its pricey i change to UM and they say the Sunway doc is famous sure not wrong. Im in medication now..thanks

Ru SLE patient also?
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uglyducking422, mind to tell me which rheumatologists doctor you are referring at sunway and also UM?
TSbabybb
post Apr 30 2015, 05:33 PM

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QUOTE(uglyduckling422 @ Apr 30 2015, 05:31 PM)
Dr Chow Sook Kuan. UM I dunno his name. Its a Professor. Indian...
*
Thanks! i will run a quick search on that!
TSbabybb
post Apr 30 2015, 05:39 PM

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QUOTE(uglyduckling422 @ Apr 30 2015, 05:34 PM)
No problem. Pls ask yr mum eat more healthy ya..no preservatives things..

Dr Chow is very famous..
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Thanks alot. She been eating very healthy recently but rashes still itchy like hell made her so frustrated. Is Dr. Chow good and friendly? Many doctor that i meet are not the friendly type. Because to be able to help my mum i tends to ask doctor question to make myself understand this lupus and to help my mum whatever i can.
TSbabybb
post May 2 2015, 09:09 AM

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QUOTE(sah147 @ Apr 30 2015, 05:49 PM)
@babybb you can also get 1st hand support from SLE patients at http://www.lupusmalaysia.org

The skin rashes can probably be helped by steroid-based creams to reduce the inflammation, but see the doctor first. This is a chronic illness (don't think it's curable using current medical tech) so it's important that the patient has a long term trusting relationship with the doctor.
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Thanks sah! I will run a quick search on that. smile.gif

QUOTE(Tham @ May 2 2015, 02:09 AM)
The clinical effect of dietary supplementation with omega-3 fish oils
and/or copper in systemic lupus erythematosus.


http://www.ncbi.nlm.nih.gov/m/pubmed/15290734/
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Thanks Tham! I heard of vitamin D3 are benefit with lupus patients as well. Not sure wanna recommend my mum have it as a supplement anot.

user posted image

This post has been edited by babybb: May 2 2015, 09:13 AM
TSbabybb
post May 2 2015, 10:13 PM

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QUOTE(sah147 @ May 2 2015, 03:19 PM)
@babybb let us know what medication the rheumatologist prescribed once you've seen. Please note that supplements are just that - SUPPLEMENTS and they're not supposed to replace the prescribed medications. I've heard about a lot of SLE patients who went off their medication when they feel that the supplements are helping. They did not survive very long sad.gif
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@sah147, no problem I will share the update at here. Are you having lupus as well? Well we know that lupus are non curable but if there is really a supplements that can help to reduce lupus rashes / itchiness we don't mind trying it even the chances are slim. Who know that miracle do happen sometime. I'm not praying to god to take the lupus away from my mum because I not its not curable but pls at least do take away the itchiness so my mum could have a good night sleep.

Its sad to see a 62yrs old elderly person to scratch them self to sleep and itch non stop for 24/7. Hope I can help my mum as much as I can. My mum follow on time to eat medicine and hope can find a supplement to help with the lupus.
TSbabybb
post May 9 2015, 11:03 AM

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QUOTE(hypermax @ May 3 2015, 08:48 AM)
If your mom has SLE, i would suggest to bring her to hospital selayang for further follow up, as it is the national rheumatology center in Malaysia and it's a government hospital, where treatment fee will be minimal.

However, since it is a referral center, u can't just walk in and get appointment. It's better for u to walk to green zone in A&E hospital selayang first, get a referral letter to rheumatology then get an appointment from rheumatology clinic.

SLE is a multisystem disease, where it can affect most organs in the body. So it's better to act fast.

The mainstay of treatment is immunosuppression. First line drugs will be a combination of hydroxychloroquine and prednisolone. Vitamin D3 itself doesn't help in treating the disease. However, it is usually given along with calcium supplement to counter the effect of osteoporosis caused by long term use of steroid (prednisolone).

Try not to take any supplement especially herbal based product as so far no concrete evidence that it will help in the management of the disease. Also, many of these products in the market right now contain steroid (LCW also kena). Thus it is not recommended as the doctors will be giving u steroid as part of the initial treatment, and excessive steroid consumption can cause unwanted effects such as osteoporosis, cataract, gastritis, obesity, diabetes melitus and hypertension.
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Thanks hypermax. Any particular rheumatology doctor should look for at hospital selayang? Not sure if fish oil can help with lupus flare.

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This post has been edited by babybb: May 9 2015, 11:47 AM
TSbabybb
post May 9 2015, 02:23 PM

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QUOTE(sah147 @ Apr 30 2015, 02:36 PM)
Please, please quickly go see any rheumatologist, the itchiness is a symptom, treat the underlying reasons first, before it spreads to internal organs.

The one at Tawakkal Hospital is good. The doc may suggest a round of treatment with some fairly strong intravenous drugs to "knock down" the over-active immune system.
*
Sah, any good rheumatologist can recommend at tawakal?

This post has been edited by babybb: May 9 2015, 02:23 PM
TSbabybb
post May 9 2015, 02:34 PM

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QUOTE(uglyduckling422 @ Apr 30 2015, 05:31 PM)
Dr Chow Sook Kuan. UM I dunno his name. Its a Professor. Indian...
*
@uglyduckling, is this the UM doctor that you are seeing now? Is he good? Dr. Sargunan Sockalingam

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TSbabybb
post May 10 2015, 12:27 AM

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QUOTE(uglyduckling422 @ May 9 2015, 06:00 PM)
Yes. I heard he is good. Fyi I see him twice only....
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Thanks! I will google about the doc later. Have you heard of Dr. Benjamin Cheah Tien Eang? Which happen to be in UM and currently he was the President of the Malaysian SLE Association. Just 1 more question @uglyduckling, if I want to bring my mum to see Dr. Sargunan, do we need to take referral letter from the outpatient dept of UM & then insist on seeing Dr. Sargunan? Is it the correct procedure?

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QUOTE(sah147 @ May 9 2015, 06:03 PM)
Dr Abdul Shukor Abu Bakar, I recommend  notworthy.gif
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Thanks sah! I will find more detail on the mentioned doctor!

This post has been edited by babybb: May 10 2015, 12:28 AM

 

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