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Coping With NLD (Necrobiosis Lipoidica Diabeticorum)

The top arrow shows the 7-month-old NLD and the bottom arrow shows a new area developing.

The top arrow shows the 7-month-old NLD and the bottom arrow shows a new area developing.

Six Months and Seven Doctors

It took six months and seven doctors before I got the diagnosis that the hard, painful, and discolored section on my leg was necrobiosis lipoidaca diabeticorum (NLD).

Since then, I've been hunting for all the treatments, possible causes, and information I can find about this condition.

It seems that little is known about its causes, its treatment, and how to stop it. I found a support group, also an online study of it, and am working my way through the information there. Join me in my search for dealing with this unpleasant condition.

I have 30 years of experience as a librarian and bring my research skills to this task. I am not a doctor or medical professional of any sort.

My Journey to a Diagnosis

In 2021, a patch of skin on my lower leg started feeling hard and was discolored. Around the edges of that patch, the skin felt lumpy and raised a bit. It felt painful to press my fingers against it. When trying to sleep, I had to carefully arrange my legs so nothing was pressing on that spot.

At first, I assumed I'd banged against something to injure that spot. I bruise easily so don't always note when I hit something. As weeks went by and the supposed bruise did not go away, I started to worry about it.

Seeing the Doctors

At my annual physical, I pointed it out to the physician's assistant. She said to give it time if it was a contusion. A few months later, I showed it to my dermatologist. He said there wasn't anything to do for it and to give it time. Next, I showed it to a different physician's assistant while there for swelling in my lower legs. She also attributed the spot to a contusion and to wait for it to heal.

At the ankle doctor, I asked him to look at it, though my visit was for arthritis pain in my ankle. He said the same as the others. Next, I visited a venous specialist for treatment of my varicose veins and in a by-the-way kind of manner asked "what's happening here?" He examined it and said that scar tissue from an injury could take a long time to go away.

Finally, a Diagnosis

Finally, I visited a different dermatologist who said he knew what it was as he'd had another patient with this condition: necrobiosis lipoidica (NL). He said it's a rare genetic condition that progresses at times into open wounds. He showed me pictures of it online, and they were frightening. The prescription he gave me was for a steroid cream.

Finding Information on NL and NLD

I tried some searches with Google but was only getting the briefest description. A Google image search brought up quite a few photos of it. It is best to spell out the name (necrobiosis lipoidica), so you don't end up with sites on non-verbal learning disabilities or on the NLD uprising in Myanmar.

Look for Support Groups

I checked on Facebook and sure enough, there was a support group of about 2000 people who suffer from this. Actually, there were several groups. They include people from all around the world and they share information and tell about their treatments and setbacks and ask questions. I found it very helpful.

  • NLD support group on Facebook.
  • Search also on Facebook for the group Necrobiosis Lipoidica Warriors.
  • A site called Stuff That Works collects results from questionnaires and presents the findings. They need NL sufferers to participate for the results will be more defined.

Day-By-Day Progression of NLD in One Patient

Flyer for a NL clinical trial at the University of Pittsburgh

Flyer for a NL clinical trial at the University of Pittsburgh

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Read More From Patientslounge

Possible Treatments

As I hear of treatments that people have tried, I'll list those here. You will need to research further on these.

Please note: This is just a list of treatments LD sufferers had tried. This is not a medical doctor's list. Please consult with your doctor before trying any of them.

Possible Treatments

  • Methotrexate
  • Humira
  • Antihistamine
  • Clobetasol ointment - a steroid used for dermatologic purposes
  • Kenalog injections (also available as an aerosol which Web MD calls "a medium- to strong-potency corticosteroid)."
  • Tacrolimus ointment 0.1%
  • Hydrochloride tablets (is this the same as Hydroxychloroquine?)
  • Collagen
  • Cetraben
  • Cetaphil
  • Cold pressed organic sesame oil
  • Tacrolimus ointment
  • Steroid injections in the raised edges around the NL spot
  • Plaquenil for ulcerated NLD. (Several people said it helped them. One said it took 6 to 8 weeks to build up in your system. Two people said it affected their vision.)
  • Vitamin E oil
  • CeraVe cream
  • Wearing compression stockings

NLD Wound Treatments

  • Debridement, compression bandages, skin grafts, steroid injections.
  • Hydrocolloid bandages.
  • Silvex
  • Hyperbaric skin regeneration therapy
  • Maggot therapy
  • ReCell Skin Procedure
  • Cortisone shots
  • Prontosan Soak and Acticoat dressing
  • Apply local raw honey to the sore and wrap the leg in plastic wrap. Look for medical-grade Manuka honey graded UMF 10, UMF 15, or higher. One warning was to have the bandage ready to cover it as the honey was very sticky and will get on everything.

NLD Scar Treatments

  • Ruby laser treatment

I Still Have Many Questions

After some weeks of searching for information, I still have many questions. I'd like to know if other issues I have are related to this illness. I get fluid accumulation in my legs, have varicose veins, and have pain in my legs, feet, and toes that bothers me at night. Are any of those connected to the NL? I have dry skin, arthritis, and am overweight. Do those conditions complicate my NL? Is NL a forewarning that I might be pre-diabetic (my annual blood tests did not show that)?

How can I find a medical professional in my area that is knowledgeable about treating this?

Is ulceration an inevitable part of NL or can I prevent that from happening with care? Already, I feel it is spreading further up my leg. What next?

Questions for My Doctor

  • My NLD is getting worse and is painful and burning throughout the day and making it hard to sleep at night. Seems inflamed. (In the support group, I hear some are getting relief taking Humira?)
  • The swelling in my left leg/ankle/foot is getting painful and causes pulling of the skin around the NLD area. I get some relief from wearing compression stockings, putting my leg up for an hour, and taking over-the-counter water pills). Could this be gout or just edema? Would a prescription diuretic be more effective?
  • Could I have diabetes that isn't showing up in my annual blood tests? I've been very thirsty lately (maybe because of the diuretic), my eyesight seems worse, have craving for sweet drinks.
  • Could a nutritionist or dietician help with approaching this from a nutritional angle? Are there diabetic specialists in the area who have solutions for NLD?

What to Put on a Dry, Painful NLD Spot

Many in the support group use a favorite over-the-counter product for their spot when it is dry and painful. Some felt that salves worked better than creams. Here are some suggestions:

  • Vaseline or Vicks
  • Aloe Vera Gel
  • CeraVe (comes in a tub)
  • Bag Balm or nipple cream with lanolin
  • CDB oil, then cover it
  • Aspercream or similar ones
  • Cetraben
  • Prototopic

Some Reported Negative Reactions to Treatments

People vary and many factors affect how an individual responds to a medication.

  • Punch biopsy for diagnosis triggered ulceration
  • Thinning of skin from corticosteroids

Learn More About NLD

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2022 Virginia Allain

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