Insulin and prednisolone problems

[butterflyfarm]

How do I manage my blood sugars on Prednisolone at 15 mg per day. I am a type 2 diabetic on insulin injections 4 times a day, plus Metformin 2 gms. My blood sugar levels are astronomical in spite of a low carb diet and exercise. Prior to my PMR diagnosis 7 months ago I was attending my gym 3 times per week until it closed due to covid. I bought an exercise bike to compensate but I don't think the diabetic nurse believes I am trying hard enough. I am 5 ft 4 ins and weigh 10 at 5 lbs. I was originally put on 40 mg of Prednisone as GCA was suspected due to agonising headaches and jaw claudication. Before steroids I was only on Metformin. I am very depressed by all of this.

[DorsetLady PMRGCAuk volunteer]

Most people (even diabetics) do find as they reduce their Pred, the blood sugars do come down as well, and hopefully they will be along shortly to advise and commiserate.

Have to say, your diabetic nurse probably doesn’t understand the implications Pred has on your blood sugars, although it is a well known and common side effect....perhaps next time you talk to her you should ask her to read the Patients Information Leaflet for steroids - Common side effects 😉...or email her a copy....

medicines.org.uk/emc/produc...

This is just one brand...but all have virtually the same side effects.

[butterflyfarm in reply to DorsetLady]

In actual fact as a type 2 diabetic just on Metformin I was not warned regarding the consequences of taking 40 mg of Prednisone for suspected GCA. Our GP surgery does not offer blood test kits, only use the hba1c test for type 2s. I ended up in hospital as an emergency with Ketoacidosis and spent 8 days there. I am now under the hospital diabetic team who regularly monitor my bloods and insulin doses and I now have all the testing kits required.

[SnazzyD]

Frustrating! Can you explain what you mean by low carb? Plenty can sneak in under the radar once the usual suspects are cut out. Have you done a food diary?

[butterflyfarm in reply to SnazzyD]

Mostly salads, cottage cheese, eggs, chicken, fish, steamed vegetables and limited fruit, as 1 medium Apple contains 12 carbs. I do have a useful calorie, fats and carbs book I bought years ago for dieting. And yes I do keep a food diary but the sugar spikes don't seem to fit a pattern. When I have a high one I get on my exercise bike for 15 or 20 minutes.

[Koalajane]

When I was first diagnosed type 2 three months after my PMR diagnosis I really cut my carbs down to under 20g. I am now on 4,25mg of prednisolone and my blood sugars are fine and I have been in remission since 6 months after my type 2 diagnosis. I don’t take medication for my type 2 but do eat a few more carbs than I did. I should add I walk a lot (usually over 13,000 steps).

Good luck to you and I hope you get the help you need.

[butterflyfarm in reply to Koalajane]

Yes thank you I am getting a lot of help from the hospital. Prior to my diagnosis of PMR I attended my local gym 3 times a week and shall return when it re-opens fully. Not sure I will go back to a 1 hour circuit each time, but I shall just do what I can. Meanwhile it's the trusty exercise bike in the garage.

[SnazzyD in reply to butterflyfarm]

Sounds like you’re one of those for whom it isn’t quite that simple. That’s a good wheeze getting the large muscle groups to use the glucose.

[butterflyfarm in reply to SnazzyD]

👍👍

[SheffieldJane]

I would just like to add that this is tremendous bad luck and is not your fault. It is a pity that your diabetic nurse does not have the knowledge or people skills to communicate this to you. You have already demonstrated huge willpower and tenacity with your exercise programme and discipline with your diet. You have also been and still are ill with a serious systemic disease. I think you need to cut yourself a break. I think you are doing amazingly well with your focus on future physical fitness. You will get there. Please be kind to yourself whilst trying new approaches and be comforted by the fact that as your Pred dose reduces so will these side effects ( it alters your metabolism). Metformin made me feel awful, perhaps it is not the best drug for you currently. My diabetic nurse is very kind and I am not nearly as compliant as you but my blood sugars have come down.🌼

[butterflyfarm in reply to SheffieldJane]

Before my diagnosis of PMR I was rather cavalier with my attitude to my diabetes and did not follow the rules on diet completely. I thought the gym would even things up. At 74 I am from the age when all our food is home cooked and fresh and eaten at a table. However, biscuits bought for hubby sometimes sneaked in and sometimes toast with marmalade! I do have other autoimmune diseases: Hashimotos thyroid and Vitiligo. You are right, I have to pace myself and housework must take a back seat.

[PMRpro Ambassador]

I wrote a reply - it's disappeared!!!

Someone on another forum who was insulin dependent spent quite a bit of time studying the relationship between his eating and exercise patterns and his BS levels. He found there was a critical period about an hour or so post-prandial when he could make a big difference to the BS level by exercising. The window was quite small though.

But I think you, your diabetic team and your rheumy team need to get together - and this really is something rather above the skills and background knowledge of a diabetic nurse, as evidenced by her lack of sympathy re being on pred. And the teams need to get together to see if there is any chance of you getting tocilizumab to get the pred dose down quickly - because of the effect of pred on your diabetes.

[butterflyfarm in reply to PMRpro]

I have also discovered that when my sugars have soared, usually mid afternoon, a session on the exercise bike lowers it quite rapidly together with a large glass of water. My diabetic and rheumy team at the hospital have got together and are now monitoring me closely, thank goodness.

[PMRpro Ambassador in reply to butterflyfarm]

Good - very relieved to hear that.

[Leilagirl]

I would just like to send an encouraging word to you . The previous advice on this forum I feel is very sound advice. Try to get out and walk in nature as often as possible. Deep breaths all along. Good posture as you walk. Find healthy food choices ... You are strong. !! Take it day by day and know that this will get better!

[butterflyfarm in reply to Leilagirl]

I have been cheered up so much by all of the kind messages of support since joining this group a few weeks ago. I feel a lot more positive now and as they I am on a learning curve. Thank you.

[GrannyJane]

Hi Butterflyfarm, love the name! I am currently on 12mg Pred, can’t advise about diabetis but there are many wise and informed women on the Forum who have done this. I do empathise with your fitness problems as before PMR I was fit and energetic! I have put on some weight although I do try and keep active and do 10,000steps per day + Have you tried the Tom Kerridge Dopamine diet it’s very low carb and balanced. My husband and I are currently on it and the weight is coming down.Good luck with the Pred reduction, I find coming down 1mg every 6 weeks works for me and so far no flares. I do take 5mg around 2am and the balance with my breakfast, but no other health conditions.

Hope you manage to balance things out and start feeling like your old self again.

All the best.

[butterflyfarm in reply to GrannyJane]

I have been completely overwhelmed by all of the kind messages on this forum. I am looking at all of the the different low carb diet books and trying to decide on which to choose.I keep seeing lots of ads regarding Michael Mosely recipes and I think he is also a doctor, so he should know his stuff.

I am making a list of questions to ask the diabetic doctor at the hospital when I have my video consultation in 2 weeks time.

[strawclutching]

I've been insulin dependant for 40 years and diagnosed with GCA last October. My Blood sugars went haywire with the Pred, but didn't follow any pattern such as time of day when the high ones occurred, etc. I have a Libre Sensor on my arm as well as a glucose meter, and readings from both differed sometimes between 7.0 and 16.0! It was mad. I was constantly fighting back with extra insulin jabs just to keep it under control - sometimes during the night too. I found if I left them until the morning I was up in the 20 somethings and feeling very unwell. My diabetes nurse had advised me to do this, but because I live alone I took no notice and still continue by the 'topping up' method, otherwise I would have been back in hospital.

Now I'm down from 40 mgs Pred to 9 mgs, and although my BS's have steadied, they go mad again with every infection. I'm currently into my fifth week of antibiotics for an ongoing UTI, and having trouble controlling my diabetes again. Unfortunately cutting the carbs brought my weight down very quickly, and I say unfortunately because I was only 8 stones to begin with. I'm now 7 and a half stones and relying on carbs to stay there. None of us follow the same pattern. My diabetic nurse suggested upping my dose here, lowering it there, but none of that worked because my ups and downs didn't follow any regular pattern.

I don't believe the doctors fully understand what an unpredictable effect illness and medications can have on our bodies. Occasionally I will get a consultant -wish they didn't keep changing all the time - who will acknowledge and appreciate my own understanding of my diabetes, while others just come across as arrogant. You will probably become more frustrated before you reach complacency, and I do feel for you. But it sounds like you are doing the right thing for you. Keep asking questions, listen to advice and find out what works for YOU. These current times make being ill so much harder and I wish the medics would not come up with what they assume is an 'instant fix' then brush us off so easily.

[butterflyfarm in reply to strawclutching]

I am lucky that the hospital has taken over my treatment now and I have a good consultant and diabetic doctor. I do agree with you that we know our bodies well and one size does not fit all, as they say. My prednisolone was gradually tapered from 40 mg to zero by January this year but symptoms came back and 3 hospital appointments were cancelled before I was put back on 15 mg in April. So it's back to square one.

[strawclutching in reply to butterflyfarm]

That must be so frustrating. Juggling two chronic conditions seems so unfair, and when you start to see a way out of at least one, fate drops you right at the start line again. ☹️

[butterflyfarm in reply to strawclutching]

I am hoping that after 21st June it will be possible to see my rheumy consultant face to face close up. Video meetings are not very satisfactory in my opinion as the patient is not totally seen and observed by the clinician.In the meantime I shall keep calm and carry on! 😑

[GCA1947]

Dear butterflyfarm,I got out of the habit of looking at the forum when I crashed my Campervan at the Doctor's surgery in October 2020, there's a concrete lip runs all the way round it and the back wheels bounced over the lip and I came to rest on the underneath water carrier cradle. No damage to Snail but after 53 years of driving I reckoned it was enough. I wasn't hurt but the caretaker called the Police and a breakdown truck to recover Snail back onto the Car Park. I was given the once over because I was severely shaken and the Police ladies called an ambulance because I was in shock, and they could see that I was suffering from something.

So they got the full chapter and verse of my Giant Cell Arteritis condition plus I have Klinefelters Syndrome and loads of other things Varicose Veins but a heart condition was found as well that I didn't know about by the Ambulance technicians when they were doing their ECG. which meant that I spent eighteen hours in Accident and Emergency whilst they checked to see if anything else was present. There are lots of complications from the Klinefelters , prone to fractured ribs I'd had ten at the time of the accident. Chronic Atrial Fibrulation so I'm now on Digoxin 187mcgrams daily.

Haven't got Diabetes and so don't use insulin, but have been on Prednisolone for seven years for my GCA. I'm a man can't explain how I got GCA as it's usually a woman's condition. I'd suggest you get back onto the Prednisolone as I found it was the only medication that cleared the headaches.

[PMRpro Ambassador in reply to GCA1947]

Not entirely female - about 27% of cases of GCA are in men!

[butterflyfarm in reply to GCA1947]

I commiserate with you, what terrible bad luck and illness you have experienced. At least you discovered the heart condition and are now being treated for it. What drives me to distraction is always having to go through the saga of my initial diagnosis of suspected GCA. I have now made notes of the timeline but the condition has now been discounted. I am currently on 15 mg of Prenisolone for the PMR. Good luck.

[amilou2006]

im afraid i wish i could help but im not diabetic .But i almost became type 2 diabetic with the weight i gained.I just fought the hunger and tried to eat foods that didnt have sugar .but your diet is totally differant , good luck and i hope you find help to your question .

[butterflyfarm in reply to amilou2006]

So many replies and so much help and kindness. I have always struggled with my weight until I was diagnosed with an underactive thyroid and my weight is now stable at last. How I envy people like my hubby who is the same weight as when we married 50 years ago and can eat anything. Yes my question has been answered thank you.