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lipoatrophy dx what do you know?

Discussion in 'Parents of Children with Type 1' started by Ivan's Mum, Oct 1, 2009.

  1. Ivan's Mum

    Ivan's Mum Approved members

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    My son got DX'ed with lipoatrophy today. I did search through previous posts and saw one Ellen posted with a pick of a 10 year old girl and that's nothing on my son's. I've attached a photo but you can't really see it in all its glory. In real life you see all the veins on his stomach and we've not injected in to it for over a year now. There is no improvement from leaving it alone. We now put sites in to his butt and the same thing is happening there. We're looking at moving to his arms to rest up his backside.

    I've been through the last 3 years notes, and I think this started since we moved to lantus. Has anyone had a similar problem and solved it by changing out insulins?

    Any help on this would be good because, lucky us, he's the first person that his hospital has seen with it.
     
  2. 4MyBoys

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    I do not know anything about it, but I'm very sorry it is happening. -Allison
     
  3. gboysmom

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    Oh my goodness...I'm sorry about this. I've never heard of it, so I am going to read on it from my big box of information.
     
  4. Ellen

    Ellen Senior Member

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    You can find quite a few abstracts and some full text articles on the subject at Pubmed: http://preview.ncbi.nlm.nih.gov/pubmed/ . My suggestion would be to search lipoatrophy and insulin, and lipodystrophy and insulin and then write to each of the authors/researchers and give them the information you have and ask for their suggestions and find out what has worked for their patients. You may be surprised at how forthcoming they are with willingness to respond. Additionally, your pediatric endocrinologist can join the pediatric endocrine listserve and ask colleagues for ideas, and you can write to CWD Ask the Team and see what the team may suggest. And please contact the insulin companies as this is clearly an adverse effect. Wishing you the best of luck finding a solution soon.

    Here are some articles:

    Human Insulin Analog–Induced Lipoatrophy : http://care.diabetesjournals.org/content/31/3/442.long


    Human Insulin–Induced Lipoatrophy A successful treatment with glucocorticoid : http://care.diabetesjournals.org/content/29/4/926.full

    LIPOATROPHIC DIABETES MELLITUS TREATED BY CONTINUOUS SUBCUTANEOUS INSULIN INFUSION : http://www.em-consulte.com/article/79770

    Insulin Allergy and Extensive Lipoatrophy in Child with Type 1 Diabetes : http://content.karger.com/ProdukteD...tikelNr=92515&Ausgabe=231794&ProduktNr=224036


    Lipoatrophy Associated With Lispro Insulin in Insulin Pump Therapy
    An old complication, a new cause? http://care.diabetesjournals.org/content/24/1/174.full

    Lispro insulin-induced lipoatrophy: a new case http://www3.interscience.wiley.com/journal/118545705/abstract?CRETRY=1&SRETRY=0

    A Case of Lipoatrophy With Insulin Glargine
    Long-acting insulin analogs are not exempt from this complication http://care.diabetesjournals.org/content/28/12/2983.1.full
     
    Last edited: Oct 1, 2009
  5. Judith

    Judith Neonatal Diabetes Registry

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    Lipoatrophy

    There are no guaranteed solutions to this problem, but sometimes switching to a different insulin will help prevent atrophy in new areas. Sometimes steroids are injected into the dystrophic areas, to help them fill in.
     
  6. Janimal

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    My friend's son had it iagnosed about 1 year ago, her doctor researched & found a cream compound called Cromolyn. They applied to the messed up area and to the area where he puts a new set in. IT HAS BEEN A TOTAL, MIRACULOUS CURE!!!! His butt is totally normal looking now--the concave area has regenerated fat and he is having no new problems! It took several months for the fat to regenerate so need to be patient with it.
     
  7. wilf

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    I suspect it's a pump site issue, not a Lantus issue. Who determines where his sites and injections go?
     
  8. Ivan's Mum

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    we decide where the sites go. We stopped the tummy after a year due to lack of fat (he has to have the 90 degree metal ones due to teflon allergy) so we are fairly limited on areas to use them on. We've gone back to the arm but basically I went through all my old notes and this wasn't a problem prior to lantus. In fact we had the opposite where he was storing fat and the doctor said to stop using his stomach or he'd have to wear a bra in a few years:p. It seems very gradual which is why it's taken so long to notice it. We are splitting the lantus now (we were injecting down the site tail) so we can see if it stops happening in the areas we use a site, sadly we've only got the arms left and summer is upon us. Then we'll have to change insulin. The next option isn't funded by government so it will all be out of pocket (NZ insurance doesn't cover rx's, pumps and the like). I'm hoping it's not to late to fix his butt, have a feeling the tummy won't improve but will look in to the Cromolyn as an option.
    The doctors are surprised that it could happen on the insulins we're using as they think it tends to happen on the older insulins but we like to be different in New Zealand.:D
     
  9. wilf

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    I still don't see it being the Lantus, but if it seems to be maybe try some totally new location for it (eg. legs?)..

    Who gives the Lantus shots? could they be the problem?
     
    Last edited: Oct 3, 2009
  10. Adinsmom

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    Francesca: Is the lipoatrophy where the pump sites are or where the lantus is injected?

    *Edited to ask* Are you considering dumping the Lantus because of it?
     
    Last edited: Oct 3, 2009
  11. StillMamamia

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    I echo what Wilf said - can you try the legs?
     
  12. frizzyrazzy

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    oh no.. poor kid.

    how high up are you putting the tummy sites??
     
  13. Ivan's Mum

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    Frizzy, we've not used the tummy for a year.... it's not coming back
    Wilf - I give the shots, but used to down the site tail, stopped now and are moving them around we've done both legs and top of one hip and are just keeping on moving so as not to use more than one place. We're avoiding arms because that's where the sites currently are. Guess if the arms start doing this we'll not it's novorapid.

    Adinsmom - It's where the sites have been.Everything went down the same tube. I would love to dump the lantus because I feel that it's the problem, time will tell but I think now that we're moving it around will we ever know? The other option isn't funded so we're a little stuck but it's not undooable. Where there's a will there's a way.

    Doctors are going to talk about it for a few weeks and look in to options. I just wish we could get some fat back. Am going to ask for some Cromolyn like Janimal suggested because from looking it up, it looks great!

    There's really only two options, it's the lantus or the short acting pump insulin so it's 50% chance that we pick the right thing to change out. That's pretty good odds really.
     
  14. frizzyrazzy

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    ooh...that just looks...bad. I wish I had something to tell you. yikes.
     
  15. Judith

    Judith Neonatal Diabetes Registry

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    Lipoatrophy

    Lantus manufacturer says it is not to be mixed with any other insulin. Some docs have ok'd mixing with a fast-acting, if it's done in a syringe and given right away. Injecting Lantus into pump tubing, thereby mixing with fast-acting and allowing them to combine for a relatively long period of time, may be at least part of the problem. Giving the Lantus by injection, in a separate area (as you are now doing?), may help.

    This, from the journal Diabetes Care, supports the above anecdotal report re: the efficacy of cromolyn cream:

    Cromolyn Reverses Insulin Analog-Induced Lipoatrophy
    Mast cell stabilizing therapy with topical cromolyn can reverse early injection-site lipoatrophy induced by human insulin analogs, and prevent further lesions.
    Dr. Allison B. Goldfine from the Joslin Diabetes Center, Boston, Massachusetts states that, ?The problem of local lipoatrophy is uncommon, "and the kinetic advantages of insulin analogs to patients with diabetes outweigh this small risk." "However, we would be pleased if our therapy provided a means to treat the lesions in those that develop this rare complication."
    Dr. Goldfine and colleagues described the pathophysiology of recombinant human insulin-induced lipoatrophy and its response to treatment with topical cromolyn in three women and two men with severe local atrophy.

    Subcutaneous biopsies from acute and chronic injection sites showed increased numbers of interstitial and perivascular mast cells with active degranulation in all cases and prominent eosinophils in three cases, the investigators report.

    "Topical cromolyn sodium was applied twice a day to atrophic areas and prophylactically to new sites of insulin administration," they explain.

    None of the patients developed new lipoatrophic lesions after using topical cromolyn, the researchers note, and four of the five showed significant improvement of lipoatrophy, with complete resolution after only 4 weeks in one patient.
    The only patient whose lesions did not improve showed progression of her lesions. She had the longest time interval from initial appearance of lipoatrophy.

    "Based on our findings, we hypothesize that mast cells found abundantly in areas of local insulin-induced lipoatrophy contribute pathologically to the destructive inflammatory process. These were tryptase-positive/chymase-positive mast cells, a subtype known to be sensitive to cromolyn but resistant to glucocorticoids," the investigators conclude.
    "Physicians are choosing to use our findings and treat empirically with the cromolyn without biopsy," Dr. Goldfine said. "This is not an unreasonable approach."

    Future long-term studies, Dr. Goldfine concluded, "will help determine whether these patients will need to use topical cromolyn permanently to prevent lipoatrophy lesions, or whether after some period of treatment with cromolyn, discontinuation with or without an additional form of intervention may halt the process."
    Diabetes Care 2008;31:442-444.
     
  16. Seans Mom

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    OK, after seeing the picture and reading a couple of Ellens links, this looks (sounds) like what we have recently noticed on one side of Seans bottom. He has developed a caved in spot, not lumpy or anything just caved in. We had planned on talking to the endo about it at next appt. thinking it may be from using his bottom exclusively for sites. Now I think I will call them and explain what appears to be going on and see what they say. I'm sorry I have no info. to share or help, if this is what is going on with Sean and they give me any helpful info I will pass it on.
    Thanks for posting this.

    edit: Well nothing useful to give, all I was told is to change site placement and it will go away. :rolleyes:
     
    Last edited: Oct 6, 2009
  17. Ivan's Mum

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    hi all, just an update, we've changed the short acting insulin and are waiting to see how it goes. The doctors were talking about the pharmacist combining the insulin with steroids and other options and I said let's just change the insulin and see how it goes.

    WHat is interesting is that now we seem to have slightly better control. I've even changed him to a teflon site last night (those of you who kinda know me may remember that we thought he had a teflon allergy and now I'm wondering if it was the insulin not the teflon) and are waiting to see how that goes.

    Because it's such a gradual thing it's going to take some time to see if there are changes but I am going to ask about the cream mentioned. So it's a long journey but we've started it. But thanks for all the help.
     
  18. Ivan's Mum

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    from what I understand it can take a really long time, so it won't be a case of blink and miss it.
     
  19. Ivan's Mum

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    With his high insulin use, it's never been a problem as it's completely out of the tube within minutes.

    I've not noticed any difference with his background insulin. He's happy injecting himself which is half the stress avoided and to be honest, makes life a little easier because he doesn't have to eat when it's time to have it. He can only reach a few places on his body so we are just a little limited about where he can inject - mainly the legs.
     

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