NHS and the dreaded libre allergy

EllieM

Moderator
Staff Member
Messages
9,208
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
forum bugs
Well, I've just officially given up on the libre after my last attempt (after a break) not only left my skin red and raw (even though it wasn't as itchy as it's been in the past) but also gave me results that were anything between 2 to 6 mmol/L under the true reading.

Now Abbott have always been in denial when I've asked them about the allergy situation - "it's very rare, speak to a dermatologist and we'll send you anew sensor as the one you are using is obviously faulty."

But my online researches suggest that this is very common, up to 40% of people have skin reactions to cgms and/or pump insertions. So, now that libre prescriptions have become much more standard on the NHS, presumably libre allergies are now a known phenomena? What are doctors saying about it (mine in NZ are clueless but the libre is still fairly rare here and I think everyone self funds)? What are doctors doing about patients who can't cope with it? (Stop the libre prescription, offer them dexcom???)

Am contemplating self funding a dexcom for myself, but am really discouraged by the thought that I may then become allergic to that. And honestly, this is a major reason why I've never got a pump, even though I've been asked if I'd like to try one.

So what do countries with large numbers of diabetics using invasive technology do about the allergic factor? (Pumpers and dexcom users feel free to speak). Anyone know if there is treatment to desensitise you once your body no longer copes with a treatment?
 
  • Like
Reactions: Medusa41
D

Deleted member 308541

Guest
Anyone know if there is treatment to desensitise you once your body no longer copes with a treatment?
I get dermatitis from surgical tape adhesive, also the adhesive on a vacuum pump dressing that I had on my right leg for about twelve hours before I ripped it of.

My dermatitis problem started with zinc creme ointment, when my skin got sensitised to it about twenty years ago.

Wish you luck finding a cure for the adhesive problem.
 
  • Like
Reactions: EllieM

Juicyj

Expert
Retired Moderator
Messages
9,016
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Hypos, rude people, ignorance and grey days.
Hi @EllieM I had the same issue too, mine looked awful sometimes when I removed the sensor and the redness would last for up to a week, I did use Cavilon which helped alot - which is a skin barrier spray.
 

EllieM

Moderator
Staff Member
Messages
9,208
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
forum bugs
Hi @EllieM I had the same issue too, mine looked awful sometimes when I removed the sensor and the redness would last for up to a week, I did use Cavilon which helped alot - which is a skin barrier spray.
Are you still using it? I'm not trying it again because the results were so erratic as to be useless ( a reading of LO meant that my blood sugar was anything between LO and 7, higher readings could sometimes just have a 2mmol/L under read), and I'm worried that repeated exposure to an allergen may result in a far worse reaction.

Though I'm guessing that the poor results were caused by the irritation?
 

JMK1954

Well-Known Member
Messages
520
Type of diabetes
Type 1
Treatment type
Insulin
The skin reaction lasted over three weeks in my case. That was the length of time I could not put my arm under a warm shower. It reacted the same way as a burn from an iron or oven.
 

JohnEGreen

Master
Messages
13,188
Type of diabetes
Other
Treatment type
Diet only
Dislikes
Tripe and Onions
I believe there are some CGM devices that use surgically implanted subcutaneous sensors but they are very expensive and the sensor has to be implanted by a doctor the sensors I believe stay in for several months before needing to be replaced.
 

EllieM

Moderator
Staff Member
Messages
9,208
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
forum bugs
Well, the US site has a safety information section that tells you to stop using the sensor and consult a dermatologist if you get a skin reaction (to the glue, no mention of the filament). But I can't find anything on the UK site.... Hmm. Could this be something about litigation in the US?
 

EllieM

Moderator
Staff Member
Messages
9,208
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
forum bugs
Any medication that you take has a long list of possible side effects - shouldn't the UK libre site have some mention of an issue that clearly affects a lot of people?
 

Marie 2

Well-Known Member
Messages
2,394
Type of diabetes
LADA
Treatment type
Pump
Eversense is the name of the one that's implanted under the skin. It has a removable transmitter. Each sensor is good for 3 months and it vibrates so you feel the alerts. The sensors themselves are fairly cheap.

However a doctor or someone on staff has to be "trained" to be able to implant each sensor.

I just can't see wanting, even if it's small, to have my skin cut open to insert a sensor every 3 months. A person that is testing it seems to be happy with it though.

UPDATE The Eversense has a European version that the sensor is good for 6 months. Plus it might only be the US that requires a certified physician to implant it. Unknown about the European version but the American one HAS to be calibrated twice a day within a certain time, You also have to charge it I believe daily..
 
Last edited:

ChrissiStar

Well-Known Member
Messages
90
Type of diabetes
Type 1
Treatment type
Insulin
I haven’t had a skin reaction (yet) but I am working with the doctors and other professionals to try to figure out if I am completely allergic to it as two weeks after I started using it I got pretty unwell. I didn’t think anything of it at the time as there was plenty of bugs doing the rounds at work, so just fired another sensor in and carried on. Last week I was due to change sensors on Thursday, but as I was unwell with erratic sugars I left it out for a few days and weirdly I was feeling better, Saturday night I felt back to normal, managed a full meal and snacks while watching Strictly, so thought I was over whatever I was fighting, so fired the sensor into my arm on Saturday evening, activated it on Sunday morning, then spent Sunday feeling absolutely horrible again and haven’t felt right since. I’m just waiting for a call from the diabetic nurses before I take this one out of my arm.
 

Juicyj

Expert
Retired Moderator
Messages
9,016
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Hypos, rude people, ignorance and grey days.
Are you still using it? I'm not trying it again because the results were so erratic as to be useless ( a reading of LO meant that my blood sugar was anything between LO and 7, higher readings could sometimes just have a 2mmol/L under read), and I'm worried that repeated exposure to an allergen may result in a far worse reaction.

Though I'm guessing that the poor results were caused by the irritation?

No I stopped using the libre as I wanted to be alerted to highs/lows so went over to the G6, but when I used Cavilon it worked, for me it was the adhesive, the filament was fine, except the odd one that hit a blood vessel so it didn't affect my BG readings, there could be a combo of a dodgy sensor and allergy to the adhesive so if I were you i'd try the cavilon first to rule this out.
 

Lampman

Well-Known Member
Messages
163
Type of diabetes
Type 2
Treatment type
Diet only
I do not use any of these sensors or pumps, but I have seen many people with allergic reactions to adhesive plasters. That would be my first thought. Also some people react badly to certain metals, especially nickel. Having worked in laboratories many years ago, dermatitis was a well known problem with many chemical compounds. In the main, where I worked, epoxy resins. My wife is allergic to those. The unfortunate affect of allergic reactions is that they tend to get worse, as the body tries to reject whatever is causing the problem. If the adhesive used or the metal in the filament are the causes here, then only changing the composition of those will offer any hope to the sufferers. A manufacturing issue. It may be that there is only a certain range of adhesives available at present, in which case more research or some novel thinking will be required. That is once they accept they have to do something!