This blog is a report on my experiences with lipodystrophy, a.k.a. lipoatrophy, due to continuous subcutaneous insulin infusion (CSII), a.k.a. insulin pump therapy. Since I discovered the first signs of subcutaneous fatty tissue disappearing, it's been a long and stressful search for finding the right treatment. After trying several treatments to no avail (hyposensibilisation, cream, mast cell stabilizer), I've finally found a treatment that works! I hope others can benefit from my experience through this blog.
Lipodystrophy, or -atrophy, was seen more often in the early days of insulin, when animal insulins were still used. It seems to occur more and more often with the use of CSII. The processes leading to liopodystrophy are not well known, and neither is there consensus about the right treatment. When lipodystrophic or -atrophic areas are starting to develop, they are often misidentified as thickening of the skin around the area, instead of depression of the skin in the area itself. When you start the right treatment (see the 'treatment that does work' and 'treatments that didn't work' posts), the problem can be resolved. When you haven't found the right treatment yet, the process of fatty tissue disappearing is really worrysome (you'll start wondering if you'll have any skin left to inject insulin in, within 5 years or so).
In my experience, there are very little medical professionals who understand and recognize the problem. Dermatologists will treat it as an allergy, but that's not the whole story. The damage is caused by putting needles, canulas, and insulin into your skin everyday for years and years and years. (If you think about it, it's actually a miracle your skin only started to protest just now.) So, you need to find an expert in both diabetes treatment, and skin reactions. And most of all, you need to become an expert yourself! Maybe this blog will be of some help in providing info and experiences.
If you want to contact me about anything on this blog, feel free to e-mail me at moc.liamg@golbortsydopil (spelled backwards for spam prevention).
Disclaimer: I am not a medical expert. Everything on this blog is a report of my personal experiences.
vrijdag 8 juni 2012
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.
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.
Treatment results
Start
The lipodystrophic spot in december 2011. It measured about 10x8 cm (hxw). In most parts of the spot, I could feel abdominal muscles directly beneath the skin. In addition, a blue vein was clearly visible. The difference between the left and right parts of my belly were clearly noticable when I was wearing a t-shirt or dress.
I started daily injections with Apidra insulin, using 4 mm needles. I started out at the region marked with blue inkt spots. I carefully injected the insulin into the fatty tissue, as close to the lipodystrophic spot I could get. I did this as often as possible, before every meal, mostly 2-3 times a day
Two and a half months later
This was the lipodystrophic spot in januari 2012. As can be seen in the picture, the edges of the lipodystrophic spot are starting to fill up. The vein is still visible, and I could still feel abdominal muscles just beneath the skin.
Six months later
The lipodystrophic spot in june 2012. Not there yet, but still improving! The vein is no longer visible, abdominal muscles can no longer be felt directly beneath the skin. The difference between the left and right parts of my belly are no longer noticable when I'm wearing a t-shirt or dress.
The lipodystrophic spot in december 2011. It measured about 10x8 cm (hxw). In most parts of the spot, I could feel abdominal muscles directly beneath the skin. In addition, a blue vein was clearly visible. The difference between the left and right parts of my belly were clearly noticable when I was wearing a t-shirt or dress.
I started daily injections with Apidra insulin, using 4 mm needles. I started out at the region marked with blue inkt spots. I carefully injected the insulin into the fatty tissue, as close to the lipodystrophic spot I could get. I did this as often as possible, before every meal, mostly 2-3 times a day
Two and a half months later
This was the lipodystrophic spot in januari 2012. As can be seen in the picture, the edges of the lipodystrophic spot are starting to fill up. The vein is still visible, and I could still feel abdominal muscles just beneath the skin.
Six months later
The lipodystrophic spot in june 2012. Not there yet, but still improving! The vein is no longer visible, abdominal muscles can no longer be felt directly beneath the skin. The difference between the left and right parts of my belly are no longer noticable when I'm wearing a t-shirt or dress.
donderdag 7 juni 2012
Treatment that does work!
The treatment that did work, consists of two basic parts
1) FIXING PAST DAMAGE: Carefully filling up depressed skin areas with injections of apidra insulin and 4mm needles (3-8 units before every meal).
My hypothesis on how lipodystrophy, or lipoatrophy, is caused in case of CSII, is that skin just doesn't like to be hurt by needles, infusions sets, adhesives, and insulin (solvents!) for years and years on end. At some point, skin is likely to protest. This may be an allergic reaction, or scarring, or what not. If you want to prevent this from happening in other places, you have to be very careful in placing your infusion sets. Not that you're very sloppy, and that other people with diabetes who do not develop skin problems are much more careful and clean etc. If you've started to develop depressions in your skin, it just means you have a sensitive skin. You may not always have had such sensitive skin, or shown these reactions, but this can come up at any moment, and from then, you'll have to learn to deal with it.
So, the main message for prevention is: be very very nice and careful with your skin! Use a different infusion set (I changed from 13 mm Silhouette to 6 mm Sure-T's), change the set more often (I went from every 3 days to every 2 days), use something for skin protection (apply Cavilon), and apply something to the skin after removing infusion sets (Bepanthen for example).
The main message for getting rid of the lipodystrophy (or lipoatrophy) places that already exist: insulin is a great filler! Where it is injected, fat cells are likely to develop. This will help you to fill up the holes. Use small needles (4mm!) to inject small amounts (3-8 units) of insulin (with as little solvent as possible, for example Apidra by Sanofi-Aventis). Cosmetic surgery may not be necessary, and maybe you'll be able to put infusion sets at the affected area's again, after a year (I hope so. Haven't tried it yet, I'll post my experiences on this blog when I have.)
Check out the 'Treatment results" post to see a report on the results.
1) FIXING PAST DAMAGE: Carefully filling up depressed skin areas with injections of apidra insulin and 4mm needles (3-8 units before every meal).
2) FUTURE DAMAGE CONTROL: Apidra insulin in my pump, changing canula every two days, using Sure-T's instead of Silhouettes, use Cavilon spray for skin protection.
After that, it was a matter of time (be patient, it's been 7 months since I'm doing this, no more new skin depressions, and the old one is filling up slowly). I hated it at the start, using injections and an insulin pump seemed like the worst case scenario. However, it's only temporary, and you get used to it.
My hypothesis on how lipodystrophy, or lipoatrophy, is caused in case of CSII, is that skin just doesn't like to be hurt by needles, infusions sets, adhesives, and insulin (solvents!) for years and years on end. At some point, skin is likely to protest. This may be an allergic reaction, or scarring, or what not. If you want to prevent this from happening in other places, you have to be very careful in placing your infusion sets. Not that you're very sloppy, and that other people with diabetes who do not develop skin problems are much more careful and clean etc. If you've started to develop depressions in your skin, it just means you have a sensitive skin. You may not always have had such sensitive skin, or shown these reactions, but this can come up at any moment, and from then, you'll have to learn to deal with it.
So, the main message for prevention is: be very very nice and careful with your skin! Use a different infusion set (I changed from 13 mm Silhouette to 6 mm Sure-T's), change the set more often (I went from every 3 days to every 2 days), use something for skin protection (apply Cavilon), and apply something to the skin after removing infusion sets (Bepanthen for example).
The main message for getting rid of the lipodystrophy (or lipoatrophy) places that already exist: insulin is a great filler! Where it is injected, fat cells are likely to develop. This will help you to fill up the holes. Use small needles (4mm!) to inject small amounts (3-8 units) of insulin (with as little solvent as possible, for example Apidra by Sanofi-Aventis). Cosmetic surgery may not be necessary, and maybe you'll be able to put infusion sets at the affected area's again, after a year (I hope so. Haven't tried it yet, I'll post my experiences on this blog when I have.)
Check out the 'Treatment results" post to see a report on the results.
Bibliography
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