Steriods - any experiences please?

[samroboli]

Hi, I am a Type 1 diabetic, for 19 years, fairly experienced as you would imagine but that doesn't always mean perfect - I have a sweet tooth!! Anyway, I experienced high sugars due to pregnancy and somehow dealt with them but now I have been (a week ago) diagnosed with Acquired Hemophilia which is a very rare blood disorder, hopefully treatable by Steriods, a large dose!!

I have been told that the steriods could make my sugar levels very high, they are but only in the evening, 19+ is a standard one I am doing trial and error increase in my Novorapid and thats the only advice the diabetes nurses can give me as everyone is different. But its quite daunting, not knowing what to expect or how bad/better things are going to get.

I would love to hear from anyone who is or has been on steriods and your experiences. Thank you.

 

[Northerner]

Hi Sam, welcome to the forum 🙂 Sorry to hear about the new diagnosis - are the steroids a permanent fixture? We do have other members who have to take steroids regularly, so hopefully they will be along to share their experiences 🙂 Any possibility of a pump to give you finer control?

 

[trophywench]

Hiya Sam

That sounds rather tricky .... cos the high BGs won't help the healing process at all.

Have you done a carb-counting course? If so, you should know your correction rate.

For instance, I know for me that 1u Novorapid 'deals' with 10g of carb, and that 10g Carb increases my BG by 3.0 on my meter. And to be honest, those are actually more or less the numbers that they tell us all to start from when testing to see what our own treatment should be, it just so happens that I'm apparently bog-standard !

So if my BG is 19.0 and I want it to be 6.0, I need to inject enough Novo to deal with the extra 13.0. 13 divide by 3 is 4 (and a bit) so I'd inject 4units.

 

[samroboli]

Hi, thank you both for your replies.

I did type out a lengthy reply and thought I had clicked send but when I logged on yesterday my reply had gone.

I will do again when I have more time, but mostly I want to know how many people on steriods didn't have raised sugar levels until the evening when taking their steriods in the morning? My diabetes nurse does not seem to know if it will stay this way for me all along the treatment or will eventually be so I get highs from morning to mid-afternoon also. I'm glad my sugars are good in the day, but at night I am really struggling keeping them down (even with corrections, thank you I do the same - 1 unit to bring down by 3) but am thinking of going 1 to 2 as it took 4 hours to come down from 25.6 to 17 the other night!!! But i'm also scared of doing too much correction as my hypo awareness isn't great, I can get to 2.0 before any symptoms.

The thing that gets me too is that the steriods raise my sugars regardless of what I eat, so I will have x amount of insulin for the food I am having (I don't carb count - briefly tried it when pregnant and wasn't sure) so I can predict whats going to happen there, but the steriods just do there own thing to me anyway. My diabetes nurse has just told me trial and error, but I don't like running so high every night all night, feel like I should be up every hour checking my sugars but hey at least I don't have my daughter inside me to be responsible for anymore, just me 🙂 and hopefully this will be over in 2-6 months otherwise chemo tablets.

 

[Caroline]

My only experience of steroids is about 18 months ago when I had Bells Palsy. I only took them for about a week and was too busy worrying about other things to be testing. The doctor at the time did say I'd be OK as it was a low dose for a short time bt there was reluctance to prescribe steroids to diabetics unless really needed

 

[Pumper_Sue]

Hi Sam, you need to look at your basal for increases whilst on steroids.
No idea how you treat your diabetes as in MDI or pump.
You can probably count on having almost double the amount of insulin in places where the steroid peaks.
So perhaps have a good look at your basal and then perhaps increase that and any other help needed correct with bolus if on MDI. If on a pump then whack up your basal.
How much steroid are you on?

 

[AnnW]

I am type two but I had a very bad chest infection 3 weeks ago, now cleared 🙂
I was put on steroids for 10 days as I have asthma too and it all got complicated !
My sugar levels were very high , especially in the evening, I reached 26 twice and I was eating well, and exercising. I was also put on gliclazide .

I had a reading of 6.1 tonight and I am thrilled ! It has taken time but hopefully I will stabilise soon.

How long will you have to be on steroids? What I am saying is, it helped me a lot to have the steroids, but I am now off them .. I hope this helps a little

Good luck . 🙂

 

[Andrew]

Steroids

My mother has been on steroids for years -- main effect paper thin skin -- which tears for a pass time !!!! much blood letting so need to cover up all the time to prevent injury

Hi, I am a Type 1 diabetic, for 19 years, fairly experienced as you would imagine but that doesn't always mean perfect - I have a sweet tooth!! Anyway, I experienced high sugars due to pregnancy and somehow dealt with them but now I have been (a week ago) diagnosed with Acquired Hemophilia which is a very rare blood disorder, hopefully treatable by Steriods, a large dose!!

I have been told that the steriods could make my sugar levels very high, they are but only in the evening, 19+ is a standard one I am doing trial and error increase in my Novorapid and thats the only advice the diabetes nurses can give me as everyone is different. But its quite daunting, not knowing what to expect or how bad/better things are going to get.

I would love to hear from anyone who is or has been on steriods and your experiences. Thank you.

 

[AlisonM]

I recently had a cortisone injection for the Rheumatoid Arthritis and it did send my numbers way up for a couple of days, I'm normally in singe figures now, so being in the high teens scared me but they did come down again fairly quickly. I'm not sure but I think if you're going to be on it long term, your body may acclimate itself and the numbers should come back down.

 

[samroboli]

hi, thank you for the replies. I will be on steriods for at least 2 months - 6 months, I've been told different things but it depends how fast it corrects my immune system really. I am having blood taken and consultants appointments every two weeks to monitor if its helping.

I was initially put on a 60mg dose, the highest I think, as what I have can be dangerous so best to be aggressive with it, but its been reduced to 50mg as I only weigh 52kg.

My diabetes nurse has advised leaving my lantus at the moment and just adjusting my novo rapid, so far I've only increased my lantus by 2 units and thats okay.

I may of cracked it for now I think : ) the last 2 nights I've had good sugars, thats from having 20 - 24 units of novorapid with my evening meal as opposed to my old 12-14. I find when I eat pastries or pies (which I seem to be craving - steriods making me hungry) they go higher though!!

The frustrating thing for me is that they just rise while I'm asleep, its exhausting getting up all the time to test and for the loo and whenever my 5 month old wakes up, but again I am so glad that I'm not getting my highs from the steriods until early evening instead of all day like some people can.

Thanks again for the replies. Mostly I miss eating puddings by the way 😛 thats really the issue here!!!

 

[Lauras87]

I've had 4 lots of steroid injections & they did push my bloods up, so instead of being my usual 5/6/7 I was around 18.

I hope the steroids work for you.

 

[Pumper_Sue]

hi, thank you for the replies. I will be on steriods for at least 2 months - 6 months, I've been told different things but it depends how fast it corrects my immune system really. I am having blood taken and consultants appointments every two weeks to monitor if its helping.

I was initially put on a 60mg dose, the highest I think, as what I have can be dangerous so best to be aggressive with it, but its been reduced to 50mg as I only weigh 52kg.

My diabetes nurse has advised leaving my lantus at the moment and just adjusting my novo rapid, so far I've only increased my lantus by 2 units and thats okay.

I may of cracked it for now I think : ) the last 2 nights I've had good sugars, thats from having 20 - 24 units of novorapid with my evening meal as opposed to my old 12-14. I find when I eat pastries or pies (which I seem to be craving - steriods making me hungry) they go higher though!!

The frustrating thing for me is that they just rise while I'm asleep, its exhausting getting up all the time to test and for the loo and whenever my 5 month old wakes up, but again I am so glad that I'm not getting my highs from the steriods until early evening instead of all day like some people can.

Thanks again for the replies. Mostly I miss eating puddings by the way 😛 thats really the issue here!!!

Hi again Sam, as you are on the same dose of steroid for the next couple of months it seems daft to me to increase your bolus by so much where as adjusting your basal will probably only take a few units.
Steroids will make you hungry esp., the amount you are taking so again make sure your weight doesn't balloon. I do so hope you were told to take the steroid in the morning as they also tend to starve you of sleep and make you hyper active. The fact your sugars rise whilst you sleep is a sure indicator it's the basal and not bolus that needs adjusting.
I've been on steroids for about 12 years but not the quantity you are on.

 

[samroboli]

Thank you again for the replies.

Hi Sue, I seem to have cracked it, still get the occasional highs at night but I am no longer afraid to have the extra insulin depending what I eat. I have started upping my insulin on my lunch time meal too, as I think the highs have started happening mid afternoon / early evening and that brings me down nicely for my evening meal too.

More good news is that my blood is clotting 50% better than it was a month ago when I was diagnosed so next week I go down to 40mg of steriods 🙂 but I have been told my sugar levels won't decrease until I am able to go down to about 20mg and that will probably be another month.

Light at the end of the tunnel

 

[samroboli]

also yes I am very very hungry because of the steriods, and the seem to be making me crave bread and pastries and cookies!!! I didn't have any cravings at all when pregnant, but now I could eat nothing but pies and naan breads etc, I am actually hoping to put a bit of weight on (I was sad to lose nearly all my baby weight) but this doesn't seem to be happening yet according to the scales, however I'm sure I can see it in my face. I know this does happen after high doses over a long period, it happened to my Mum.

 

[Northerner]

That's great to hear samroboli 🙂 Hope your recovery continues well 🙂

 

[LeeLee]

Glad it's working, and that your dose is coming down. 🙂

I only ever have short high-dose courses for asthma crises every 3-4 years, and CRAVE carbs - with constant aching hunger whether I give in or not. I always put on loads of weight, even in a short time - but then again I only have to look at naughty foods to pile it on. I hope you achieve a happy balance!

 

[Pumper_Sue]

Thank you again for the replies.

Hi Sue, I seem to have cracked it, still get the occasional highs at night but I am no longer afraid to have the extra insulin depending what I eat. I have started upping my insulin on my lunch time meal too, as I think the highs have started happening mid afternoon / early evening and that brings me down nicely for my evening meal too.

More good news is that my blood is clotting 50% better than it was a month ago when I was diagnosed so next week I go down to 40mg of steriods 🙂 but I have been told my sugar levels won't decrease until I am able to go down to about 20mg and that will probably be another month.

Light at the end of the tunnel

Hi Sam, so pleased things are improving for you and there's light at the end of the tunnel.
I would take with a pinch of salt the no reduction in insulin after a 10 mg drop 😱 Make sure you have hypo treatment at the ready and adjust your insulin as soon as the slightest drop is seen. Which I would expect to see within a couple of days from the decrease in steroids.