I recently wrote a post about what I'd learned about how steroids and what and how you eat affects blood sugars from the Zoe programme (link to post below).
Well now I've found out that Abbott are giving free 2 week trials of the Librelink monitor, and after the 2 weeks if you wish to continue it costs £48 per 2 weeks or if you have type 2 diabetes they told me my GP should be able to prescribe it. I'm not sure if that is true as my GP hadn't heard of it a few months ago, but things might have changed.
When I rang up to enquire they asked me if I had type 2 diabetes and I said Yes even though hopefully I'm now in pre-diabetes levels rather than diabetes. They didn't do any checks just took my word for it.
The benefits are that you wear the CGM on your arm and then an App on your phone takes continuous blood sugar readings. So you can see what effect eating different foods has on your blood sugar levels. You don't get all the backup information you get from Zoe, but in my case that and the other tests weren't particularly useful. I'm going to try it for a month and experiment. I've already learned for example that bread and pasta make my blood sugars rocket, but by how much depends on the time of day and what you eat with it eg more veg and protein and whether or not you exercise within 20 or 30 mins of eating.
from what I have read doctors don’t give it on prescription unless you are on insulin and it also depends on your authority. Many type 2s cannot even get a glucose monitor unless they are on medication like gliclazide that can give you hypos
that's what I thought too, but that's what the guy on the Helpline said. I'm just going to get all my results and if by some miracle I can get a GP appointment will educate him/her on blood sugars and diet!
Unfortunately it is a postcode lottery as NICE guidelines are that if you inject insulin twice a day you should be entitled to one on prescription BUT that is what they are guidelines and many cannot get one. I think it is unlikely that unless you are on insulin you will get one prescribed
And if you are in the regions on free prescriptions you get free Libres for Type 2 and to help Prediabetes people too.I believe that they can be funded through the NHS England on the Prepaid Prescription Scheme , which is a set fee for all your prescriptions all year so it be a lot cheaper altogether.
My Aunt got one prescribed in England for her Type 2 as well. Sometimes its more about nudging the GP to know they can sort it out
My sister can’t even get a glucose monitor and strips and lancets on prescription. I know in my area you can only get one if you are on medication that can cause a hypo like gliclazide or on insulin. As I say it is a postcode lottery at the moment
Thanks for highlighting this - it could be very useful for some people. I've been researching and using low carb diets for some time and I avoid obvious sugars like the plague as well as pasta, rice, potatoes etc. It seems to have worked well for me.
I have lost about 1.5 stones and I was pre-diabetic (something my GP neglected to tell me and I had to find out another way). Now my numbers are back in the normal zone and I work to keep them there. I've found that once I got used to low carb (no wheat and very little dairy either) I no longer enjoy the sweet stuff as much or the feeling of being too 'full.' It's changed my tastes as well as my weight and well-being. I also heal more quickly from cuts and wounds. These are just my observations but valuable to me, at least. However, for someone already diabetic it would be great to have a monitor by which you can learn what affects your blood sugars and in what way - a valuable resource.
All very interesting, thank you, good to hear such a positive story. I bought a cake yesterday, having not had anything sugary for about a week. Well, it was so sweet I couldn't finish it, and even half a cake sent the blood levels flying on the monitor. I knew bread and pasta rised blood sugars too, but I was surprised by how much and how quickly when I've been expeimenting. Luckily the monitor shows that my bloods return to normal within a few hours too, but constant ups and downs can't be good for you. I have really cut down on milk and largely switched to oat milk, but I still eat a bit of cheese, for the calcium levels and making meals tastier.
I've told SM about it in my appointments, she is very excited about it. My results change a lot of things she previously believed like before she recommended me being on medication for diabetes. I think it's way down on the big list of things that need to be studied sadly, though that might change if the CGMs are more available and cheaper. I think the Drs would rather prescribe 'a pill for the ill' as you say than trust patients to manage things by diet. I think most diabetes patients would love the monitors, I'm fascinated seeing what happens in real time and the challenge of trying to stay in the 'green zone', it's like an addictive game
Dunno - developing diabetes when on pred is actually one of the major longterm adverse effects and can entail a lot of ill-health as a result. If it were shown that it is possible to bring the diabetes risk and weight gain down during pred treatment, it would be quite significant. Not least because women are a lot more bothered about it than men and WOULD attempt to stick to a diet ...
I totally agree, but what I'm thinking is that so little money goes into PMR research and what does looks at things like methotrexate. CGMs would be money well spent if they reduce the incidence of diabetes in the UK as I keep seeing articles about how it's a time bomb in an obese and ageing population. £100 a month cost to the NHS is a no-brainer, it's really come down in price
There's probably a huge amount of people with T2D, who all take up resources needing nurse and GP monitoring with medication, which according to many studies eg Mosley, taylor et al actually makes things worse, not better.
That is interesting. I have learnt from testing regularly how much exercise (walking for me) can lower my sugars. I have also learnt that we are not all the same and that what spikes my sugars does not necessarily spike others.
I believe all type 2 diabetes should be given a monitor and lancets and test strips on prescription. 50 test strips can cosr over £10 and many type 2 diabetics have to fund it themselves. Then perhaps we can talk about all type 2s getting a CGM!
Same here re spikes and how exercise helps. The timing is also crucial, I can get away with a few carbs at teatime eg a bit of brown rice or granary bread but not lunchtime. You can't get the Libre3 in the UK yet so I'm guessing he got it from the USA. If our NHS gave everybody CGMs I'm sure obesity and T2D levels would plummet in the population, money better spent than promoting the stupid supposedly ideal carb-heavy plate nonsense that they currently spout and even pay organisations to promote as healthy diets. Oops sorry don't get me started, I accidentally climbed on the soapbox there. 😀
It is the way the time of day makes such a difference that seems crucial to me. The whole idea of insisting people need to eat carbs and then need more medications is lunatic and propagates the idea that it is fine to stuff your face with carbs and take a pill as there is no other option.
That is interesting. I have been wondering what effect exercise has on blood sugar levels. I am not very mobile at present, waiting for a new knee, but I do manage a few kilometres on the exercise bike. Can't wait to get mobile again!! Thanks for making this available.
A lot of diabetic type 2 patients would love to get a glucose monitor on prescription. Unfortunately so many nurses and GPs think testing would only worry the patient. Having one helped me find out which food was bad for me, how much exercise can bring my sugars down and exactly when and how long my steroids spike my sugars
I always wonder why they think all patients panic MORE when they KNOW more. There are patients it wouldn't be suitable for but many of us do far better when we know what is going on.
I met a diabetes nurse by chance at an event recently and he said now all new diabetes nurses are being training in how the CGMs work, she was wearing one that she showed me it's partly why I went to find out more
My hubby has had the Libre system on prescription for about a year as a Type 1 Diabetic.It's good to have it just there to check instantly as well as it being linked to the surgery so the Diabetic Nurse can easily check how you are doing.
If you are eligible to get one to try on the NHS which Diabetics and some Prediabetes are it's worth getting one and trying it.
Just a few things worth knowing if you use it and also suffer with hypoglycemic episodes or diabetic events or health problems that affect the skin.
1. The systems results lag behind your blood glucose level by about 5-10 minutes.
This is worth taking into consideration when checking your results during a low , or deciding when to check your general level.
When you are eating or drinking to increase sugar levels in an emergency it is still necessary to use your finger prick monitor to make sure you don't end up having too much sugar and swinging the other way causing thirst, frequent weeing and headaches .
It is best to check your sugar level 15 minutes after waking up to allow for morning upsurge before choosing your breakfast.
If you need to check your sugar level 10 minutes after a main course before choosing a dessert , or 10 minutes after the end of a meal in case you require medication or activity to bring your blood glucose level down.
If you are feeling lightheaded and busy remember that the reading you get off the Libre may be slightly higher than the actual sugar level , if the arrow points down it shows the levels were still dropping so if the count is close to low range don't think you have extra time , stop then and have your snack.
2. The needles patches are not as sticky as they could be so if you have smooth skin, perspire, or are in the shower or put it on straight after they come off easily that can also happen with movement of clothes. At first my husband was finding a patch which should stay in for a week could come off in under a day and they only give you the exact amount of patches they believe you require a month because of expense .
In the first few months my OH only got to rely on it for a few weeks until he found some round waterproof covering patches online which he now puts over the Libre patch to protect it and keep it in place.
3. If you suffer from allergies or hypersensitivity to needles or anything sticking on the skin , it's worth testing but you are likely to find you can't use the Libre. This has happened with a few friends I have with Type2 and Fibro, and one with eczema. Within a short time they had inflammatory swelling around the needle site and contact dermatitis, A friend with EDS also had the needle problem , patch slipping and the problem of it taking off their fragile skin .
That's probably an extra consideration if you are also suffering with fragile skin and rashes while on high dose steroids.
Otherwise , it's a very user friendly system and it does help you keep better track of your daily progress and make better diet choices, especially if you are prone to forget to test regularly through the day or are to busy to do it easily at work,
Many thanks for sharing the info which will be useful for anyone thinking of trying it, whether they have diabetes or not. Type 1 must be very complicated to manage
Believe it or not , it's easier than diet maintained Type 2 to manage because you have the injections to adapt to what you are eating . Although it was harder in the early days learning what to eat and how much. It's hard when the hypos occur though, especially these days because I'm not as physically able as I was to be able to get food into the OH if he is resisting.Type 1 is an autoimmune condition so the mind as well as the body acts against the idea of eating when the person is low and sees something to eat as an attack on itself. On a couple of occasions it's only been threats of calling an ambulance that have convinced him.
Thanks very much for flagging up the Freestyle abbott link because I was refused by Zoe because I was on Pred. I have just applied and looking forward to see if it can help as my weight gain is over 10 kgs since diagnosis even though I am on the same foods as before. I have cut down on refined carbs and sugar and fruit apart from berries but no reduction on the scales!
Was also glad to read about Trochantoric Bursitis and not attempting physio or deep massage until the inflammation has gone or reduced. I perch on a high chair but not for more than 10 mins and it has helped the pain a lot. Oedema in the legs and feet has reduced too. It's all a learning curve and really helped by our sharing on this forum. So thank you everyone.
A few of us have to reduce to a very low carb level before we can lose weight - SnazzyD and I both had to get to almost keto levels to lose and it was VERY slow. But also maintaining weight is a win - and I find that a LOT easier.
Same here, it's frustratingly slow to lose weight, and up and down, but very low carbs seems to work best for me. If I indulge in the carbs like I did in summer on mini-holidays it very quickly piles on again, a week to gain 9lbs on and a month to lose it again. You'd think I'd learn wouldn't you but I clearly lack discipline. It's also got easier now I'm down from 25 to 11mg Pred, I've lost nearly 2 stone since Easter
I've tried to do keto and failed but might give it another go now I'm on 11mg Pred and unless I eat anything daft, blood sugars are within range and no spikes. Can but try eh?
You can try physio but it won't do anything for the bursitis, and it is very unlikely to go away on its own, the best solution is a steroid injection which yor GP should be able to do (mine did, quite a few years ago now). I remember him pressing on various points and saying does it hurt here and on one particular jab I yelped and nearly hit the ceiling, which presumably confirmed the inflammation was what he thought it was! Trochanteric bursitis also seems more common with PMR, in fact I vaguely remember PMR Pro posting something about bursitis in hips and shoulders might be a diagnostic tool for pMR but can't find it now
"Subacromial-subdeltoid bursitis, glenohumeral joint effusion, and hip joint effusion are common findings in patients with PMR. In addition, such patients appear to be highly susceptible to peritendinitis and capsular edema."
Don't think I've seen that one but it's a good 'un, thanks. I think I was getting confused with the Dejaco paper. Amazing what else seems to come as a bonus with PMR, or is it actually all part of PMR and doctors usually just focus and hone in on the stiff hips and shoulders aspects? One day you'll be able to put all the bits that are troubling you into an AI programme and it'll go aha, you've got PMR! Be more reliable than GPs trying to rmember everything.
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Was doing so well now back/hip problem 
