Well it's Official Steroid induced diabetes has got me.

[Tigger6717]

Thought I was doing great loosing weight on the blood sugar diet, but no every day my sugars would rocket and I felt dreadful, so I agreed to treatment, but got put on Metformin which is not recommended or even suggested for SIDM. I made the decision to split my dose of Prednisolone and that seems to have helped so far. Have a new drug to start tomorrow.

I seem to be spending my time looking after side effects, while occaisonally worrying that not everything is as settled as it should be - like when I wake up with jaw pain in the night- does anyone else get this? Also neck and shoulder pain on the side the arteritis was diagnosed on.

[DorsetLady PMRGCAuk volunteer]

Hi,

Don't really understand your comment about Metformin not being recommended for SIDM, I think there are a few patients on here on it. Sure if that's the case they will confirm.

As you've decided to split dose then that may help your night pains, but it is not usually recommended to spilt dose if you have GCA. Have you checked with doctor?

[BonnyQuine in reply to DorsetLady]

Hi Tigger 6717

Yes, I was on Metformin, plus Repaglinide and Alogliptin, for SIDM. It was effective for blood sugar control, and does not promote weight gain. I was lucky to be able to use it for several months - the first few crucial ones - but eventually had to stop as I developed side effects - mainly quite bad gastritis. Now I take an increased dose of Repaglinide, plus Alogliptin and Dapagliflozin. The control is not as effective as the combination with Metformin, but I'm managing - just. This is in addition to a v low-carb diet. As someone else mentioned, am desperately avoiding insulin - ref DVLA etc - esp w the hope that as the Pred dose decreases the blood sugars will gradually improve.

I did try splitting the Pred dose (GCA), and also tried taking it at different times. Now I take it all at once around midnight, which seems most effective for me. Can't say what might suit anyone else. Used to get intermittent jaw pain etc, but tended to regard that as a flare, and would increase Pred dose. Touch wood, haven't had it for quite a while now. Used to get a lot of headaches, neck pain etc, but these are all greatly reduced also. It takes time for things to settle. Pred now down to 13.5mg using DSNS tapering, which seems to be working. Fingers crossed. Pred side effects have been my 'new norm' for months, but I'm beginning to feel as if there's light at the end of the tunnel.

Good luck.

[Tigger6717 in reply to DorsetLady]

Hi Dorsett Lady

No haven't checked but seeing him this afternoon. It certainly helped to cut down the very high blood sugars though, which the Metformin didn't, in fact my sugars stayed higher all day long. and I felt a lot less shaky during the day.

I am a bit confused though my GP seems to think that I am now 'cured' and should be reducing my dosage of Pred as fast as possible, but when I tried that I felt awful, going back up made things worse and I think kicked the high sugars up a notch as I wasn't this bad initially. Nothing ever mentioned about right dose for treatment

Now he's talking about sticking me back on Metformin for three or four weeks until it settles. I really think I will go bonkers if I have to be like this for three or four weeks.

The comments around Metformin and SIDM are from a research paper dated 2014, where is says it is not ideal because of other side effects one that particularly worries me is liver problems as I am already on Methotrexate for Psoriatic Arthritis, and lilving in a small village where I need to rely on my car it's tantamount to bricking me up as I have to make a judgement as to whether or not to drive on a day to day time to time basis - today I couldn't as I can't see very well. If it was possible to attach a copy I would.

[DorsetLady PMRGCAuk volunteer in reply to Tigger6717]

Hi again,

So your GP thinks you're "cured" - where do they get their ideas from! If it wasn't so worrisome it would be laughable. Are you being seen by Rheumy for your GCA?

Didn't realise you were on MTX, you comment re Metformin makes sense now.

Fully appreciate your concerns about ability to drive - in same situation myself. My problem being arthritic knee, so I would struggle to get to bus stop!

Do hope you get some resolution to your problems soon.

Take care.

[Tigger6717 in reply to DorsetLady]

Thanks, GP tells me he knows all about diabetes, am on a waiting list for a new supposedly v good rheumy so hoping for more info/ help guidance, and a little less bullying.

I can get to the bus stop its right outside my front door - unfortunately only two buses a day and in only one direction - not the pop group, and not a lot of use.

Thanks for being there

[PMRpro Ambassador in reply to Tigger6717]

Just to echo DL's post! Where do they come up with some of these ideas?!

[miss-philosopher]

I´ve read that Berberine should be as effective as Metformine. And with almost no side effects. I don´t know if that is true. Has anyone tryed it ?

[PMRpro Ambassador in reply to miss-philosopher]

webmd.com/vitamins-suppleme...

This is a supplement so not subject to the same controls as drugs - and although that is claimed, there is no real evidence yet.

[Hindags in reply to miss-philosopher]

Unless I'm mistaken my cousin takes Thorne Berberine for her cholesterol. I'll have to check.

[Hindags in reply to miss-philosopher]

My cousin told me that in her experience Thorne's Berberine has been the most consistently effective. Just her observation. But she's also pretty good at google research.

[Tigger6717 in reply to Hindags]

Thanks - that sounds interesting I will explore.

[PMRandRA in reply to miss-philosopher]

please don't take " no side effects" claims at face value. I made that mistake with Krill Oil " fabulous for RA PMR any joint disorder.

unless you are over 60, with rheumatoid arthritis and take Magnesium tablets! In which case you will contract a serious bladder infection which nobody in the UK has heard of!

Not you, one. I know you haven't got this infection whatever it is.!

so what I am saying is beware health claims!

[PMRandRA]

That is sad news. My Steroid induced diabetes is in remission due to the 8 week blood sugar diet and I am no longer on Meds for it.

It sounds as if your GCA is still active and you will probably need more Pred. I suggest you see your doc or get to A&E urgently to get a professional opinion and increase your prescription.

[Tigger6717 in reply to PMRandRA]

I was trying the eight week sugar diet from the moment I realised I had an odd high sugar going on, but even using the diet shakes and sticking to the low calories I had highs of 14+ and felt really unwell. Lost quite a bit of weight though. Think I'll stick to that and see what happens. I really don't want any more issues to deal with, I'm feeling kind of swamped right now- sorry for moaning

[PMRandRA in reply to Tigger6717]

no need to apologise.

The diet I did which was so successful does not have shakes, whichbtend to have sugar in them - not good for diabetes. If I may recommend the book called The 8 week blood sugar diet by Dr Michael Mosley, which can be found in most supermarkets and Amazon. Cost about £4.00 and there are no other fees!

If you choisevto do ir there isca support group on facebook called Friends of the 8 week blood sugar diet and 5:2 diet. ( I think! 😆)

[Tigger6717 in reply to PMRandRA]

Hi

I have the book and tracked down the mix recommended, there is some sugar in there but very little. Thanks for the tip about the support group I'll tak a look

[Hidden]

Hi tigger6717

I have been dx with type2 diabetes for 17 years which has been controlled by diet and/or metformin which worked very well albeit with other help of glicazide and injection called Byetta as years progressed and insulin resistance got worse.i went back to just metformin 3 years ago when i lost 2 to 3 stones. Most of which I put back On due to hypothyroidism and latterly steroids from.pmr since June 2016. Steroids pushed me into total loss of control. Like you I felt terrible until I got control back. Via my worse diabetes nightmare insulin (dvla etc)

The metformin has no side effects for me apart from occasional tummy grumbles and is supposed to help with weight management. All the literature says hypo unlikely on metformin but I had close shaves so please invest in glucose meter if you Havent already and get go to put test strips etc on prescription. Lots on market. I use accuchek mobile cos used cartridges instead of fiddly strips. And carry glucose just in case.

I have got a book called carbs and cals by cheyette and balolia. Pictures of food portions with carb counter. Easy to use..recommend

I am hoping that once steroids come down I can come off insulin and there's is no reason to believe you won't get back into normal range. Good luck.

[Tigger6717 in reply to Hidden]

I have got a meter - the worry I have is that my surgery sees Diabetes as a useful funding stream because they claim extra payment for managing diabetics. If I get on their list I'll never get off- so keen they gave me a free meter and test strips and everything. If you go in with a strained wrist they do a diabetic check- as a friend of mine found out. Not good.

[Hidden in reply to Tigger6717]

Yes. It took ages to get them to take put symptoms seriously cos everything for 17 years is because of diabetes....and cos I am fat. The usual go to.. .

[Tigger6717]

Hi Everyone

Sorry I have been a bit quiet, (paused for sighs of relief all round). I did some thinking and having been told that my sugars were not that high really, decided to ignore the tooth suckers who had been saying that they were rather high, and stop taking pills for something I didn't really think I had. My experience with Metformin was highish sugars all day and through into the morning - which was silly as without them I was back down to 6.5 and 7 by Breakfast time. On Glicazide my sugars still went up during the day, but dropped overnight to 4.5 or 5 leaving me to wake up with an awful headache and an urge to go back to sleep which would have been a bad idea. So I gave myself three days just on the diet- I am working out my calories as well as using shakes when convenient, but was still getting highs so I have tried Berberin. So far only good news - daytime highs down to 10 and 11 and back to normal bloods by late evening and through till breakfast. Still getting very tired but happy that I am back in control for now. Hopefully as my pred comes down the need for anything at all will go. That said I have been getting some odd sensations on my scalp and my eyes have been a bit uncomfotable, but fingers crossed. Thank you thank you thank you for the suggestion, its certainly helped me.