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neshama48"Having Crohn's Disease for over 26 years, in the first few years, it lonely and isolating.
Though now my disease is in a near perfect remission, my friends and family are sympathetic to me, but I can not talk to them about this disease. When I stumbled across MD Junction, and met others who had the same disease I was not alone in battling the disease. MD Junction is like a second family, without the judgement or guilt of having Crohn's Disease, but they do give you love and support.
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Dercum's Disease Support Group
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in Adiposis Dolorosa General & Support - 10 hours ago
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DD INFORMATION WEB SITES
Written by grandmasylvia   
30 May 2012
Two very helpful web sites.

Happy reading! Hugs, Grandma Sylvia



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The Three Types of Dercum's Disease
Written by grandmasylvia   
07 March 2012
Here are the three types of DD.

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Tumescent liposuction in lipoedema yields good long-term results
Written by hopefullee   
29 November 2011

I found this today and thought that it may be helpful regarding Liposuction for the tumours .... cheers lee

 

Link   http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2133.2011.10566.x/abstract

 



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Intravenous lidocaine
Written by NavyDiver1   
12 September 2011
Treatment of pain in adiposis dolorosa(Dercum’s disease) with intravenous lidocaine:a case report with a 10-year follow-up

SIR, Adiposis dolorosa (Dercum’s disease) is a rare disorder characterized by painful subcutaneous lipomas. Pain treatment with general analgesics often has little or no effect. Weight loss for patients is difficult and there is no guarantee that the lipomas and the pain will disappear even when normal bodyweight is achieved. Surgery may provide temporary pain relief;1 however, the lipomas may recur quickly and surgery is also not without risk. Liposuction, an analogous procedure to surgery, has been reported to be a successful treatment for eliminating

the lipomas and the associated pain.2 Intravenous administration of lidocaine is a nonsurgical treatment.3–5 We report the first case, in a 60-year-old woman, of 15 repetitive successful interventions with intravenous lidocaine to alleviate pain over a period of more than 10 years.



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Dercums Disease as presented on Discovery Health TV in June 2010
Written by ArtsyAnnie   
04 September 2011
This article is a summary of (top researcher) Dr. Karen Herbst’s discussion of Dercum’s Disease or Adiposis Dolorosa as seen on the TV show, Mystery Diagnosis, June, 2010.  We wrote almost word for word what she said on the show; we are Dercum’s Disease patients not medical professionals: Sylvia Burleson (Ohio) and Anna Hogbin (West Virginia).  We have both suffered this disease for our whole ife and we are in out 60’s. Karen L. Herbst, PhD, MD, is a research endocrinologist at the VA Hospital in San Diego, California USA, and Assistant Professor of Medicine at the University of California at San Diego (UCSD). She is doing research on Lipomatosis Disorders. Since March 2006, she has seen patients with Dercum's Disease (DD)), Madelung's Disease and patients with Familial Multiple Lipomatosis (FML or MFL) at the clinic in the VAMC in San Diego..        More information an be found at her website:  Dr. Herbst’s website:  www.lipomadoc.org  

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Improvement with infliximab
Written by NavyDiver1   
20 July 2011
?2LL 1eEe2t0tTtt0eTer7rE tsoR t Soth TtehO Ee dT EiHtodErit EoDr ITOR Dercum’s disease (adiposis

dolorosa): a report of improvement

with infliximab and methotrexate

Editor

A 50 year-old, Caucasian woman with a history of

ankylosing spondylitis and insulin-dependent diabetes

had a 5-year history of increasingly painful bulky tumours.

Surgical excision of a tumour from her right buttock in

2002 revealed a lipoma. In 2003 she was diagnosed with

Dercum’s disease. In July 2004 the patient weighed 362

lbs, with a body mass index of 54.5. Physical examination

revealed multiple, tender, subcutaneous tumours on her

trunk and extremities.

The patient was started on infliximab infusions in

September 2004 at a dose of 3 mg/kg to control her ankylosing

spondylitis. The intervals between infusions were

gradually increased from 2 to 6 weeks. In November 2004

the patient reported improvement in her polyarthritis, an

incidental improvement in the pain from her tumours,

and an 18-lb weight loss. Methotrexate was added to her

regimen, starting at 10 mg/week and then increasing

to 20 mg/week. A month later, the patient reported an

additional 10-lb weight loss. Over the next 6 months the

redness and size of her lipomas continued to regress, and

there was a decrease in subjective pain and in insulin

requirements.

Infliximab and methotrexate were discontinued in May

2005 because of bilateral cellulitis of the lower extremities.

Since this time her pain has recurred, she has gained

15 lb in weight and there has been an increase in her

insulin requirements.

Treatment options for Dercum’s disease are few, and are

often ineffective. Weight loss and common analgesics

have been tried with little to no benefit. Intravenous lidocaine

and low-dose, daily prednisone have helped in only

some patients.1,2 Surgery and liposuction may temporarily

reduce the number and size of the lipomas as well as

the associated pain, but the tumours usually recur over

time.3

Our patient is the first reported case of improvement in

Dercum’s disease with infliximab therapy. It is unclear

whether the patient’s improvement derived solely from

the infliximab, or if methotrexate played an additive role.

However, we do know her initial improvement occurred

on infliximab alone. TNF-alpha has recently been reported

to play a role in the release of circulating free fatty acids,

leading to a decrease in peripheral insulin sensitivity.4 Infliximab,

as a TNF-alpha inhibitor, may improve Dercum’s

disease by inhibiting this process. Metabolic studies have

shown both alterations in fatty acid metabolism and a

peripheral insulin resistance in Dercum’s patients, suggesting



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