Treatments that didn't work

Pre-lipodystrophy history

I was diagnosed with DM T1 in 1995. I got started with two daily injections, which was increased to 4 later on. I've been on an insulin pump since march 2006. I've been using Novo Nordisk's Novorapid insulin, and Silhouette 13 mm canulas.


Start of skin problems

Since 2009, a lipodystrophic area started to evolve. It started out with a small depressed spot on my belly, like a scar you may get from surgery for appendicitis. When I showed it to my diabetes nurse, she at first told me that it probably was not a depression of the skin, but that the skin around it was elevated, which probably meant I was overusing the same spots. I tried to vary the places I put my infusion sets even more. The spot did not disappear, but stayed more or less the same for a year.

At the end of 2010, the spot started becoming larger and larger. When I showed it again to my diabetes nurse, she was amazed, and said she hadn't seen this for a long time. We contacted my internist. He referred me to the insulin allergy team at the hospital.


Treatments tried 

I went to the insulin allergy team, consisting of an internist, an endocrinologist and a dermatologist, who was specialized in allergies. They ran several tests (my skin was scratched with solutions of insulin and solvents used in insulin, and after 30 minutes skin reactions were checked). I showed a slight reaction to one of the solvents, but nothing very shocking. I told the team I didn't think this had anything to do with my fatty tissue disappearing, as this process happens over the course of several months, not 30 minutes after injections. They told me that it was an allergic reaction anyhow, that they'd seen it before, and that their advise was hyposensibilisation. This would mean that we would insert a canula near the affected areas, and start with tiny amounts of insuline, and increase the amount every 15 minutes, until normal doses of insuline (>1 unit) could be injected without any skin reaction (though that is hard to tell, when the process takes weeks of months). This type of treatment has proved to be effective in cases of other allergies. However, I have never been convinced that these skin problems are a pure case of allergy. I decided to try it anyway. A few weeks later I had to report to the hospital. I had to stay there for a week, and the treatment was completely useless. No effect whatsoever.

After that, I have tried Cromolyn and Protopic:

Mast cell stabilizer (Cromolyn for oral intake) has proven effective in some cases. It has immunosuppressive properties, but does not have the side-effects of glucocorticoid steroids. Mast cell stabilizers work to prevent allergy cells called mast cells from breaking open and releasing chemicals that help cause inflammation.They work slowly over time, taking two to six weeks to become effective. I've taken it for three months, to no avail.

Protopic cream. I think the dermatologist just wanted to get rid of me for the day by giving me a prescription for it. It's normally used for eczema. I've applied it on the affected areas twice a day for 2 months, to no avail.


Finding a different doctor
 
I discussed the treatments tried and lack of results with my diabetic nurse, and asked whether she knew of anyone in the medical field who may have any experience with these things. She only knew of one MD, a pediatrician at the other side of the country. I contacted the pediatrician by e-mail, and she called me back the next day. I made an appointment, and she suggested a treatment that, finally, proved effective (check out the 'Treatment that did work' post for info).


Treatment not tried 

In other cases of lipodytrophy (or lipoatrophy) due to insulin, treatment with betamethasone (glucocorticoid steroid with anti-inflammatory and immunosuppressive properties) has been found to be effective. However, the side effects may be problematic: increased need for insuline and higher glucose levels, among others.