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Suggest Treatment For Xanthoma Disseminatum

Posted on Mon, 3 Nov 2014

Question: Hi,My brother is 32.When he was 18 years old started to get itchy spots(armpits,groin,behind kness,some by eyelids).he lives in Lithuania.About 7 years ago i did bring him to Rush hospital.He was diagnosed with Xanthoma disseminatum.At that time no treatment was known.Hospital looked at him,many doctors came out to take pictures...They asked if he could come back.He or I can't afford treatment in US.Lithuanian doctors said to him,they don't know how to help,started to ignore,instead of research or trying something.I kept reading ...I couldn't give up.(He never had normal life ,never takes his clothes off,swims...He is afraid to be a man,maybe father.He is greatest man i ever known )His lessions kept on growing.5 years or so,he developed thirst ,his lesions filled ,erupted.That is when I found an article showing diabetes insipidus.I asked him to go to his doctor in Lithuania and check for that. He was diagnosed with diabetes insipidus,medicine MINIRIN few times a day spray. Medicine helped with eruption,bleeding lessions.He has XD(biopsy showed CD1a- ,S100- ,CD 68+ 100%) 2012 I found Dr XXXXXXX E.Gibson article about 2-chlorodeoxyadenosine treatment. My brother also started to be on diet. Also send a link : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC0000/ .Doctors gave him 2 medications (3rd is not approved they said in Lithuania)2012 used interferon injections,2013-2014 early Lipanthyl 200mg(Fenofibratum) and Simvacor 10mg(Simvastatinum) .After Interferon injections,or pills blood work showed no changes.

Answered by Dr. Jyothi B L (1 hour later)

Brief Answer:
Specific query/ queries necessary

Detailed Answer:
Hi,
Thanks for asking.

I am Dr. Jyothi BL and I will be answering your query.

I went through your query and I was unable to identify any question.

Can you be specific about what you are expecting?

The third drug has numerous complications, however you can substitute with pioglitazone (you can use any from the group of thiazolidinedione), which has similar action. However, bladder cancer risk persists in it.

Interferon is rarely, if proved to be effective. Its no reduced immunity to be treated by interferon and changes cannot be expected.

Please clarify, how I can help you. Put forward a query.

Any further queries, happy to help again.

Dr. Jyothi BL

Above answer was peer-reviewed by : Dr. Vinay Bhardwaj

Follow up: Dr. Jyothi B L (26 minutes later)

Sorry for not being more specific.
Questions : Is there most effective treatment available? Should my brother try Dr.Soo-chan XXXXXXX treatment :Rosiglitazone/Simvastatin/Fenofibrate? Using just Simvasatin and fenofibrate didn't make lasting diference . Should he try treatment by dr XXXXXXX Gibson 2-chlorodeoxyadenosine ? Is there known info that this disease just goes away? Maybe just keeping a stick diet??? Is there anything you could offer to check or do? Thank you

Answered by Dr. Jyothi B L (8 hours later)

Brief Answer:
Try both Dr. XXXXXXX & Dr. Soo-chan

Detailed Answer:
Hi,
Thanks for asking again.

At present, based on research Dr. XXXXXXX Gibson method of treatment with 2-CdA is the best method available. This method has worked in all the patients being treated.

Diet along would not be helpful in anyway as it is a histiocytes disorder.

At present most of the treatments have been proved ineffective. Dr. XXXXXXX and Dr. Soo-chan study requires further larger studies to substantiate effectively. However, patients with XD are very less and it would take longer time for studies to happen.

I would suggest your take lipid lowering therapy of Dr. Soo-chan along with 2-CdA. Both together should make a difference.
As there are no adverse events, I would suggest you to try both of them for 6 months, before thinking of other things.

Hope it helps.

Any further queries, happy to help again.

Dr. Jyothi BL

Above answer was peer-reviewed by : Dr. Yogesh D

Follow up: Dr. Jyothi B L (12 hours later)

Thank you very much for your time.I will get this info to doctors in Lithuania with a hope they will try to help my little brother.God bless you!

Answered by Dr. Jyothi B L (1 hour later)

Brief Answer:
you are welcome

Detailed Answer:
Hi
You are welcome. If you don't have any further queries You can close the discussion and rate the answer.
Regards

Note: Hope the answers resolves your concerns, however for further guidance of skin related queries consult our Dermatologist.Click here to book a consultation

Above answer was peer-reviewed by : Dr. Ashwin Bhandari