Steroid induced diabetes

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Bunty

Joined
Aug 21, 2014
Messages
285
Location
UK
Has anyone been diagnosed with this?
If you have, I'd be very grateful if you could answer a couple of questions for me..
Did it all go away once you were off the steroids?
Was it type 1 (insulin) or type 2?
Did you start tapering down the steroids as soon as you got the diabetes diagnosis?
If it went away, how long did it take once you were off the steroids..immediately, a few weeks, a few months??
Thank you.
Bunty x
 
The pain and the inflammation will go down and you will feel better, but with my case I will feel good for a few weeks or maybe even a month, then my body would need the steroids. Take the least amount of steroids you can, I taper off as I start feeling the swelling going down. They tell me it's no cure but the steroids are a life saver during a flare-up.
 
I was on Pred,for a month early in the summer.40 tapering to 5.I had the worst flare ever,2 weeks in,which lasted for 5weeks.So much blood I had to flush twice to clear it away.
I was also DX'd pre-diabetes,(46.)It came as a shock I can tell you.I was waiting for an OP.to remove my gall bladder (it's out now).So now I'm trying very hard with my diet.Or my diet's very trying,if you like.hahaha.My crohns,GB removal and pre-diabetes all dictate that I don't eat this or that or the other.I hope you get sorted soon Bunty.
 
Dee, thank you for your input. It's the diabetes I'm concerned about at the moment, I know I'll come off the steroids at some point but am anxious about what they've done, and the long term effects, in terms of steroid induced diabetes.
Scottsma, I have a feeling my diet is also going to be very trying too..ha ha 😁 Not easy is it? Hope you're getting back to some kind of normal after your op, thanks for your reply.
Bunty x
 
I father was diagnosed with prednisone-induced diabetes. He was on prednisone due to emphysema and was not able to discontinue the prednisone. His diabetes was controlled with diet alone.
 
Don't be afraid to take medications for the diabetes if you need them.

My husband has diabetes and is now on insulin. He is type 2. The main complications caused by diabetes are due to lack of effective treatment to control the diabetes. I am of believe that his health would be better is his diabetes had been taken more seriously earlier.

Ask to be referred to diabetes specialist.
 
Thank you all very much for your replies, it makes such a difference 😊
It's a relief in one way to know what's been causing me to feel so dreadful these last few weeks, instead of feeling better now that the crohns stuff has just about settled. I'm just annoyed now that having to take steroids has done this...
Thanks again everyone, I really do appreciate it 😍
Bunty x
 
T2 was the mail cause of my dad's problems for the last 10 years of his life. This aint something to ignore. But it can be dealt with.
 
Just as an update on this, and it may help others...
I've just got out after spending two nights in hospital hooked up to an insulin pump and IV fluids in what they called a diabetes crisis....blood sugars through the roof, high level of ketones in urine, some signs of kidneys struggling.
Now on two types of tablets for it, may be able to get rid of one once off the steroids but no guarantee, highly probable it's with me for ever now.
Once I've had a good nights sleep in my own bed I'm sure I'll feel a lot better, at the moment it seems a lot to take in.
Ruddy steroids eh? 😏
Bunty x
 
Sorry to hear that Bunty. Was thinking about asking you how the GP phone call went but obviously things escalated. Glad you are ok now.

Do they know it is definitely Type 2 you have then?

Hope you get a good night's sleep in your own bed and things look a bit brighter in the morning :)
 
Thank you for your kind words and good wishes. I feel a bit brighter but the head is still reeling a bit.
Two good things have happened since this...
Yesterday I had a great GP appointment with a locum GP, was in with her for half an hour and she went through everything, did a medication review, a medical history, put me on statins, gave me strong words about me not taking the alendronic acid for the osteoporosis I was diagnosed with four years ago, and when a tear or two crept down my cheek, put her hand on my knee and said this too will pass. Lovely lady.
Today, GI appointment equally good. Am to be started on infliximab ASAP, and start tapering the steroids from tomorrow...yay! 😊
Whlist still feeling shakey and a bit vulnerable, at least I can see a bit of sun peeking through the gloom ☀️
Thanks for the support which is so readily and generously handed out here, I'm sure I'm not the only one who appreciates it. I wish all of you the very best in your various struggles with IBD.
Bunty x
 
Kat, they won't put a name on it right now.
I may be left as a type 2 if it doesn't go away after coming off the steroids, it depends on how damaged my pancreas is, whether or not it may kick start itself, whether one of the meds might just stimulate the insulin production too much meaning that I may have to inject. Even if that happens, it won't mean I'm type 1 as that's an autoimmune disease and that's not what I have.
It's a waiting game.
Take care,
Bunty x
 
I see. Yes, I wondered if it could be type 1 because sometimes people get more than one autoimmune disease and because of your son having it, but good that not. Hopefully it could still go away or if not, be managed by oral meds. I'm not saying having to inject insulin would be the end of the world, just something I'm sure you could do without!

Really good news re the infliximab, and steroid tapering. Pleased for you. Sending you lots of good thoughts :) x
 
Sorry, only just seen your reply Kat, I've not logged on for a while.
Yes you're right about people having more than one autoimmune disease. I've told my son to ask at his next diabetes review at the hospital, about his chances of developing crohns. Not that it will make much difference really I suppose, either he will or he won't, there's nothing he can do to prevent it.
I start the first infliximab on 2nd November, and whilst I'm pleased to have the go ahead and funding for it, I do feel a tad nervous now it's just on the horizon, wondering how it will go.
The blood sugars are still too high, I'm off to see my GP later today to see what she has to say. I'm a bit confused about who is actually in charge of my diabetes care...the hospital diabetes nurse, the GP, the practice diabetes nurse, me??
Hope all's well with you.
Bunty x
 
Black seed oil can help with type 2 and even type 1 diabetes.

Check for medication interactions before use.

Dan
 
Hi Bunty,

What are the nerves about? Possible side effects or whether it will work? I was super nervous before I started Humira, but in the end I really didn't get any side effects, bar some general tiredness. I really hope you have a good reaction to it.

I'm not sure Humira is working for me at all :( Got MRI of my fistula today and hasn't shown much improvement at all. Have gastro and surgeon appointments next week.

Sorry to hear your blood sugars are still high. I guess it's a case of getting the medication right. Have you got a hopital diabetes doctor? I would have thought you'd have a consultant in charge of your care, but I don't know how diabetes teams are set up. A specialist dietitian may be able to help as well. Ultimately you are in charge, but you need to get the right people on board - easier said than done I know.

Re your son's chances of developing Crohn's - it's probably best to try not to worry about it. As you said, there's very little he can do to reduce his risk. Unless he smokes, in which case he should give up immediately!

x
 
Yes, Kat, on both those counts. I'm sure it will be fine, just can't help worrying a bit 😏
How long have you been on Humira, and have you ever been on infliximab yourself? When I told the consultant that was the one I'd decided on after giving it a lot of thought, he asked why purely out of interest, and then said infliximab was very useful for those with fistulas, which I don't have, but reassured me he was fine with me having it, all down to personal choice. Maybe your appointments next week will come up with a solution for you, hope so, it must be disheartening to have little or no improvement, I am sorry 😕
I saw the diabetes consultant whilst in hospital and he said he was happy for me to be seen in clinic by the specialist nurse, who I have to say is great, but she's on holiday this week hence my GP visit. When the nurse is back she wants to see me, and also a dietician. I am pretty switched on about food but I do think it will be very useful to have some professional input too. It made me smile in hospital, I was offered diabetic marmalade with my toast and when I said diabetics were actually told to avoid diabetic products, and could I have ordinary and just use a tiny amount, she looked very worried and said she'd have to ask the nurse in charge. I gave in and accepted the diabetic stuff. We've never bought special diabetic products for our son having been told right from the start they're not necessary and cost more. Makes me wonder why they're still sold.
Ha, you'd go a fair way to meet anyone as anti smoking as both our sons, they complain loud and long if they're in the slightest sniffing distance of a cigarette, thankfully! 😬
All the very best to you, keep your chin up
Bunty x
 
It's completely understandable you would worry. I'm sure everybody does before starting biologics.

I've been on Humira since March this year so about 7 months. I've heard others say on this forum that Infliximab is supposed to be better for fistulas, but my gastro presented both as equal. One of the things I'm going to ask about is whether it might be a good idea to switch though.

My other thought is I might not even have Crohn's disease. My original diagnosis was ulcerative colitis, which was changed to Crohn's colitis & perianal when I got the fistula. But it's always been a possibility that I have UC and an unrelated fistula of cryptoglandular origin (that's what they call it when it's non-Crohn's but essentially it's idiopathic - they don't know the cause). So if the fistula isn't caused by Crohn's then the biologics can't heal it and it's surgical treatment or nothing - so many permutations to think about...

Thank you for your kind words, it really helps to have people to chat to about it. I think my family and friends are sick of hearing about my bum!

Oh good, I'm glad your hospital are on the ball with the diabetes :) I'm training to be a dietitian so I'm probably a little biased, but hopefully she could help you a bit. I agree the 'diabetic' marmalade in the hospital sounds a bit strange - something to ask the dietitian about!

Good your sons have never smoked! I am a reformed smoker, having given up 10 years ago, but I smoked for 10 years before that. Always wonder if I hadn't would I have developed IBD - but then I'd never heard of IBD before I got it...

x
 
That's really interesting Kat, you training to be a dietician, I know where to come if I need some advice 😉
How's it fitting in with your crohns, etc? Does your training happen in college or at a hospital? What's your ultimate career goal...hospital dietician? I confess I know nothing about it.
I got the impression from my IBD nurse, and the gastro, that they would have preferred me to go on Humira, simply because they get a bit clogged up at the hospital with infliximab infusions and I'm just adding to it. The gastro did say they're addressing the problems though, and didn't try to persuade me either way.
Maybe infliximab will be the next thing for you to try, assuming they still think you have crohns. My cousins daughter is a teacher, she treats her infusions as a guilty pleasure and quite enjoys the few hours she spends having them, chatting to others and having tea and biscuits.
It's such a complicated disease isn't it, like yourself so many people seem to have difficulties getting a definitive diagnosis no matter how many tests they have. I've stopped talking about it in the main now, to friends, it's too long winded to try and explain properly without their eyes glazing over, so I just change the subject. I think most people think it's just like having a bout of diarrhoea..probably what I thought too actually. The only person who truly understands is my husband, he sees it all on a daily basis, and the effect it's had on our lives.
I'll let you into a secret, I too am a reformed smoker, a secret one though, I still don't think my sons are aware I ever smoked! I gave up about fifteen years ago, when I finished work and had my first hip replacement, having smoked on and off since I was eighteen. How I wish I'd never started!
Best wishes to you Kat.
Bunty x
 
Ha! I'd stick with the specialist diabetes dietitian if I were you ;) I'm 2 years into a 4 year degree. It's both university and hospital based, but mainly theory so far. Crohn's hasn't really caused much problems to date, as I am mainly well, but there are some implications for how much time I could take off for any surgery- it's not as easy as taking a leave of sickness absence from work. Also a few concerns re being on immunomodulators and being in hospital environment, and I have to avoid contact with certain infectious diseases.

My plan is to become a hospital dietitian yes, but no idea in which specialism yet.

They never told me you got tea and biscuits with the infliximab infusions! That might have been enough to swing it, I can see why they don't shout about that ;)
 
Kat, I hope you go on OK with your appointments this week. I have my fingers crossed that a solution can be found for you, a definite diagnosis would be a start I suppose but we all know how difficult that can be sometimes.
I hadn't though of someone working in a hospital environment and being on immunomodulators too, I guess vigilance and good hand hygiene are the way to go 😷
Please let us know how you go on 😊
All the best,
Bunty x
 
Thanks Bunty. I've just written 2xA4 pages of things to discuss with the gastro tomorrow. He is going to love me!

Hope you are feeling well and steroid tapering going ok. When does Infliximab start?
 
I always go in to any medical appointment with a list of questions Kat, you only get one chance to ask them don't you, nothing worse than remembering something afterwards... I think they appreciate you taking an interest in your treatment too, especially someone like yourself who seems to have a really good grasp of it all.
I have two more days on 6 steroids then drop down to four, which will be half of what I've been on for a couple of months, past experience has shown that's a significant milestone.
I'm hopeful it will also have an impact on the diabetes, which will have a knock on effect on the blooming oral thrush, just in case that puts a spanner in the works starting infliximab on 2nd November!
Good luck for today.
Bunty x
 
Om3, will do.
So far I'm doing four finger prick blood tests each day, on doctors orders, to keep a close eye on how the blood sugars are going. There's a downward trend but it's not going as quickly as I would like.
I've reduced one of the diabetes meds by half as I've been having some hypo issues early morning, but then it all rises too much over the course of the day.
I guess it will continue to be a bit difficult to really get a handle on until I'm off the steroids completely...only another three weeks two days to go!
Bunty x
 

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