Autoimmune hepatitis/corticosteroids

[randomange]

Apparently, my immune system is not content with trying to destroy my pancreas, and so it has now decided that my liver must die and I'm currently in the process of being diagnosed with autoimmune hepatitis. 🙄

My blood glucose levels went through the roof when the whole thing started, as a result of which I'm now on about double the insulin I was on before. The diabetic clinic aren't hugely surprised (apparently liver inflammation will do that to you), and have generally recommended testing lots, using corrections and temp basals where necessary, and getting in touch if/when I feel like I need help. This is what I've been doing for the last couple of months, and my BGs in general haven't been too bad. However, I'm now about to start on the treatment, which is corticosteroids, and I've been told that this is likely to be a long term thing, although hopefully on a decreasing dose.

Autoimmune hepatitis is one of those rare things that's kinda less rare in people who already have an autoimmune disease, so I was wondering if anyone on here had any experience of it and would have any advice? Or anyone who's been on steroids and can offer some thoughts? My main concern is that they're going to send my BGs sky-rocketing, but is there anything else that might affect my diabetes?

I have to say, though, I've been massively impressed with my GP and my diabetic clinic, who have been really on the ball and helpful, chasing things up, explaining what's going on and generally offering lots of support.

 

[Twitchy]

Really sorry to hear that! Sounds like a nightmare!! But as you say, at least they have spotted it & are treating you.

Afraid I can't help re the steroids, as the last time I had any I was pregnant (they were for baby who was due to put in an extra early appearance!!) so I'm not entirely sure what effect they individually had on my sugar levels, but I suspect you're right to expect an increase! Best of luck, & I really hope the treatment helps you quickly.

Twitchy xxx

 

[Copepod]

I'm sure the clinic will be far more helpful than anything I can say. However, steroid treatment is usually started at a low level, and doses gradually increase, under medical control (and may eventually be decreased, also under medical control), so you'll be able to monitor blood glucose and adjust insulin doses as required.
Guess alcohol is off the plan for a while, or only very small amounts?

 

[Robster65]

Likewise, can't offer any first hand advice, but you sound like youre being really positive and strong, which is a wonderful inspiration to the rest of us. It could happen to any of us by the sound of it. But seriously hope it doesn't !

I hope you continue to get first class care from your team.

Rob

 

[Caroline]

I can't offer any help or advice either, but at least you are getting help. Knowing what is wrong is a step towards getting the right treatment and you doctors and health care professionals sound brilliant.

 

[AlisonM]

I've had to take cortisol (hyrdocortisone) for an adrenal insufficiency for many years and I'm told this may be the root cause of my diabetes. Steroids can raise BGs, especially when taken over a long period of time which is why I was recently moved over to a non-steroidal anti-inflammatory (Ibuprofen) for rheumatoid arthitis as the burden of so many steroids was raising my numbers to dangerous levels, that's what all that fun I had a few weeks ago was abount it seems. Unfortunately, I need the cortisol to replace what my body no longer makes for itself so I'm stuck with that forever. We've reduced the dosages as far as possible and are watching my progress closely. My new doctor tells me it's going to be a juggling act between the two requirements from now on. Another reason he is using to justify to the PCT the test strips he's given me, and one which just might work.

Sorry I can't be more encouraging.

Keep testing. It might be valuable to test about two or three hours after you take your steroid to see what effect it's having and if there's a spike. You may find your numbers are elevated and staying that way though.

 

[randomange]

Thanks for the lovely replies everyone! I don't know what I'd do without this forum. 🙂 I'm trying to stay positive about the whole thing, and I think living with diabetes has helped that (I have a had a strop or two though, I will admit! 😛)

I'm fairly sure I was on steroids many moons ago to treat rheumatoid arthritis, but that was when I was but a wee Ange and home blood glucose testing wasn't as common as it is now, so I have no idea what kind of effects they may have had on my levels. I suspect it's going to be much the same situation as you Alison, in that it's going to be a juggling act trying to balance everything, so it's helpful to read someone else's experiences. 🙂

I think I can safely say the steroids have kicked in though - I ran a bit high most of yesterday, and then woke up this morning to a very stubborn level of 17.8, which really doesn't want to come down. I think testing and adjusting my insulin to suit is going to really be the only way forward, I'm just hoping that things stabilise a bit and I can take it from there. The way I'm heading I'm going to be going through an insulin cartridge a day!