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?

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

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.

What is the name of the drugs? can tell?

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.

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.

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.

Thanks! i will take note on that

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.

My mum use this shower gel for bath which she claim can ease her itch for temporary:-



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



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



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

the bath gel where to get?
Yes im having lupus. just knew it last year...

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

@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.

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

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?

uglyducking422, mind to tell me which rheumatologists doctor you are referring at sunway and also UM?

Dr Chow Sook Kuan. UM I dunno his name. Its a Professor. Indian...

Thanks! i will run a quick search on that!

No problem. Pls ask yr mum eat more healthy ya..no preservatives things..

Dr Chow is very famous..

This post has been edited by uglyduckling422: Apr 30 2015, 05:35 PM

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.

I saw her 3 times only. First time she ask me do blood test. Second time confirm SLE. Third time for eye test. then I change doctor coz too pricey. She is good for sure. U can try. To understand lupus u can go google. or Join FB group. many SLE patients. Group : Lupus & Autoimmune Disorder Awareness and Support or Lupus and me. If you can understand mandarin go search "hong ban lang chang" group.

@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.

Collodial oatmeal bath lotions help eczema patients, so should
help SLE too.


http://www.rakuten.com.my/shop/caringpharm...SC0002_0116671/



http://www.lef.org/Protocols/Immune-Connec...t/Lupus/Page-02

http://www.lifeextension.com/Protocols/Imm.../Lupus/Page-les

http://www.lef.org//Magazine/2014/3/Safely...iseases/Page-01



Peony.

Clinical study of total glucosides of paeony in patients with
systemic lupus erythematosus.

http://www.ncbi.nlm.nih.gov/m/pubmed/21608216


http://www.iherb.com/Life-Extension-Peony-...ggie-Caps/55657



You could try my schoolmate, Yap Boon Hung, rheumatologist at Tung Shin.

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/

Thanks sah! I will run a quick search on that.

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.



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

@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

@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.

The autoimmune pathways involved in SLE are quite complex, but
SLE is basically an autoimmune disease with inflammatory components.

Initially it was thought that SLE was mainly a Th2-predominant disease,
however, studies showed that Th1 is also upregulated, particularly
in CNS lupus.


What is the Role of Th1 and Th2 in Autoimmune Disease ?

http://autoimmune-paleo.com/what-is-the-ro...immune-disease/



Interferon gamma, produced by CD4 (T-helper cells) and macrophages,
is implicated.


The role of IFN-gamma in systemic lupus erythematosus:
a challenge to the Th1/Th2 paradigm in autoimmunity.

http://arthritis-research.com/content/3/3/136


Th Subset Balance in Lupus Nephritis.

http://www.hindawi.com/journals/bmri/2011/980286/




Effect of rituximab in refractory SLE: inhibition of Th1 ?

http://rheumatology.oxfordjournals.org/con...45/1/121.2.full

Peony, mentioned earlier, looks promising.

I think your mum should try it out.


Anti-Inflammatory and Immunomodulatory Effects of
Paeonia Lactiflora Pall., a Traditional Chinese Herbal Medicine.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108611/



Therapeutic effect of total glucosides of paeony
on lupus nephritis in MRL/lpr mice.

http://www.ncbi.nlm.nih.gov/m/pubmed/21515463


The PDF of the full text of the above study is in Chinese.
Print it out and show your mum.

http://www.j-smu.com/pdf2/201104/201104656.pdf




Total glucosides of paeony induces regulatory CD4(+)CD25(+)
T-cells by increasing Foxp3 demethylation in lupus CD4(+) T-cells.


http://www.ncbi.nlm.nih.gov/m/pubmed/22406048/




Effect of total glucosides of peony on expression and DNA methylation
status of ITGAL gene in CD4(+) T cells of systemic lupus erythematosus.


http://www.ncbi.nlm.nih.gov/m/pubmed/22659657/



The full text here is also in Chinese.

http://www.csumed.org/xbwk/fileup/PDF/201205463.pdf

Peony prevents bone loss in rheumatoid arthritis.

Total glucosides of paeony prevents juxta-articular
bone loss in experimental arthritis.


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3728075/



Peony in inflammatory bowel diseases - ulcerative colitis and Crohn's disease.

Paeoniflorin abrogates DSS-induced
colitis via a TLR4-dependent pathway.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3920084/

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.

http://www.elephantjournal.com/2014/08/how...immune-disease/

Found tis article

Thanks hypermax. Any particular rheumatology doctor should look for at hospital selayang? Not sure if fish oil can help with lupus flare.



This post has been edited by babybb: May 9 2015, 11:47 AM

Sah, any good rheumatologist can recommend at tawakal?

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

@uglyduckling, is this the UM doctor that you are seeing now? Is he good? Dr. Sargunan Sockalingam

Yes. I heard he is good. Fyi I see him twice only....

Dr Abdul Shukor Abu Bakar, I recommend

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?



Thanks sah! I will find more detail on the mentioned doctor!

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

Sorry I dunno the Dr Benjamin. As I say I'm a new patient. Yes u do need a referal letter and u need wait few months only can see the doctor. I'm not sure u can insist seeing Dr Sargunan but I see if sle mostly is seeing him as he is the Prof there in sle Clinic.

Hi, can i know what is the different between "Rheumatology" and "Nephrology" ? if for SLE

Hi sorry I don't really know but from google Rheumatology is study of rheumatism, arthritis, and other disorders of the joints, muscles, and ligaments.
Nephorology is refer to kidney problem.

You may ask your doctor about this two.

Hi my sister diagnose had RA problem,may I know the dr chow in sunway medical it is good?

Yes very good. She have alot of patients.

Hi, after reading your passage, I have similar conditions which in the past few years I have been diagnosed with eczema. I have been asked to apply steroids creams and moisturisers but my skin conditions didn’t get any better. I have not done any proper skin check yet and I am thinking to do a details skin check.You mentioned that you went to HKL and done several tests. Other than Biopsy, may I know what other test you have done? Do you just find general dermatologist for the skin check ?

being a systemic autoimmune disease, kidney problems are the most feared.
there is dr amir azlan zain in sunway.
get treatment soon

SLE is an autoimmune disease, apart from the drugs, you may also try PALEO AIP Diet, it is a proven diet effective for autoimmune patients. Im not asking you to substitute with the drugs, but combine with the drugs will be very useful for your mom.

check out PALEO AIP Diet

This post has been edited by Freemasonry: Sep 5 2018, 02:06 AM

Eczema isn’t a skin problem. Rashes, itchiness, inflamed & dry skin are merely symptoms of eczema. It’s actually an auto immune disorder. Looks at it like an allergy cause it’s very similar.

First step is to heal your leaky gut with pre & probiotics
Second step is to avoid all inflammatory food eg sugar, gluten & processed food
Third is to avoid high histamine food (google for the list)
Fourth is to regulate back your immune system (google immune boosters)
Lastly is to keep your skin moisturized

Also it’ll be very helpful to identify your eczema triggers. Basically identify what you’re allergic to. So allergen test would be great but it’s not 100% accurate. Do a food diary too to help track your food intake to identify your allergen better.

Dr Leong Keng Hong from Mount Elizabeth is a good rheumatologist, in case anyone is still looking for one. He's in SG though.