Anyone taking azathrioprine n prednisolone

[Pussycat432]

I have autoimmune hepititis also fatty liver reflux too and suffer from extreme nausea n breathlessness anyone else suffer from nausea esp when taking these horrific tabs. I do realise we take them for a valid reason but the side effects are awful

[AyrshireK]

If azathioprine doesn't suit you or is causing too many side effects there are other immune suppressants that can be used. Your specialist should be able to explore other options.

I don't know whether you do Facebook but you might find it amazingly helpful to join the UK AIH Support Group on there. There are over 1900 other members all of whom are fellow AIH patients or like me loved ones of those with the condition. The group is supported by some of the top doctors in the UK who are working in the field of AIH research and treatment and they even have annual / bi-annual conference style meetings at which some of these top medics come to speak.

Every member has experiences to share with regards to treatments and timing of tablets to reduce side effects.

You'll find the group at :- (It is a closed group so no one else on your Facebook feed will see what is on the AIH group) facebook.com/groups/AIHorgUK/

Best wishes, Katie

[Pussycat432 in reply to AyrshireK]

No I'm not on facebook but thankyou Katie . I have told the pharmacist about this problem he said sometimes when you are taking dif brands of your tabs prescribed the coating could affect your stomach eg sometimes I'm given the teva version other times think it's called a avartis or similar sometimes it's woocart don't know if it would make much difference

[GrandmaDylan in reply to Pussycat432]

I'm waiting to see the specialist pharmacist who will monitor me closely to check for any problems I might have. Don't you have a specialist nurse who will monitor you?

[Hidden in reply to GrandmaDylan]

A specialist nurse Debs - what’s that? Never ever mentioned to me!

[Pussycat432 in reply to Hidden]

Nor me

[GrandmaDylan in reply to Hidden]

I will be monitored by a specialist pharmacist for the AIH to make sure that the medication is appropriate plus I see a specialist gastrointestinal nurse for my bleeding duodenal ulcers etc.

[Hidden in reply to GrandmaDylan]

That’s good stuff Debs. 👍. Hope it helps.

Wish you wouldn’t talk about your ulcers like that.................................................................................................joke - poor one it’s true but please don’t anyone jump down my throat. Debs already knows I’m a daft so and so!

Miles

[Pussycat432 in reply to GrandmaDylan]

Wow I don't have one of those , that would be nice, I have my bloods taken regularly though, I have a great hepatologist though who I see twice a year, i ask questions all the time about my liver levels . I meant to ask if I should be taking multivitamins but forgot to so I will ask in May when I see him. Also need to ask if should be taking milk thistle. Ru in uk

[Hidden in reply to Pussycat432]

Hi 😺 yes Debs is in UK ☹️

Miles

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[GrandmaDylan in reply to Pussycat432]

Yep I'm from Manchester. My hepatologist who was lovely and very pro active after a 22 week wait to see him arranged a liver scan for the following week has now left the hospital. I knew he was a locum but he told me he'd be there for 6 months and now there's no hepatologist at all.

[Hidden in reply to GrandmaDylan]

Like the post but not the fact your hep person did a runner...

(Hey my ipad keyboard is working now - did a reset, sometimes fixes it sometimes doesn’t 🤓)

[Pussycat432 in reply to GrandmaDylan]

Oh nooo, I've had mine cancelled a few times over the years instead of twice year it's been put back and ended up being 9 months annoying when you want to know how you are getting on. And look forward to having a chat and getting advice. But I suppose when you see the volume of the ppl waiting to see him. It gets bigger everytime. So I'm not going to moan

[alfredthegreat]

Hi. At the moment I am on 5mg prednisolone (this has reduced from 20mg over the last 4 months) and 75mg Azathioprine. I take quite a few tablets along with them and I have only just stopped taking a large amount of painkillers. I have no ill affects at all but I do also take a drug called ranitidine that is to protect my stomach lining. Alf

[Pussycat432 in reply to alfredthegreat]

Hi I take 5mg maintenance dose pred and 50mg azathrioprine . I take the levothroxine first as have under active thyroid that's on empty stomach then I have my breakfast half hour after n take aza n pred after food

[alfredthegreat in reply to Pussycat432]

Are you sure its the pred and the aza upsetting your system. I only say this because my brother-in-law takes levothyroxine and he can't take it on an empty stomach. He's had a lot of trouble with it. He needs to take 150mc a day and he has to have it in 50mc doses 3 times a day as he cant do the 150mc in one go and he can't do it on an empty stomach because he said it feels like his insides are being scoured with a brillo pad!

[Pussycat432 in reply to alfredthegreat]

Oh really!! You've got me thinking now. I've been taking them all for same length of time. My dose age of Levo is only 50 micrograms I'm going to try it with food tomorrow morning thankyou so much for that

[alfredthegreat in reply to Pussycat432]

My brother-in-law has to do it that way. Better that way than not at all!

[alfredthegreat in reply to Pussycat432]

If you find it is the levo causing the problem they do make it in 25mc size so you could have a word with your GP with a thought to taking 2 smaller doses.

[Pussycat432 in reply to alfredthegreat]

That's so true, thanks so much,

[Hidden in reply to Pussycat432]

Why do you have levo on empty stomach? I have mine whenever in the morning along with all my other tabs. Some are meant to be taken with food and some not. I just have them as soon as I get up irrespective - otherwise I’d forget - seriously. No probs at all - fortunately 😁

Miles

[Pussycat432 in reply to Hidden]

I take them on empty stomach cos my dr told me to do that, so I just checked to see from the imformation inside the box and it says take on an empty stomach 30 mins or preferably an hour before food. I've been doing this for years, and for blooming years I've had nausea but always put it down to azathriprine n pred that I take

[Hidden in reply to Pussycat432]

Aha OK thanks. Oh well I’ve never been told that or more like I can’t remember being told that 😁

Miles

[smp071266 in reply to Hidden]

Same here Miles - I have taken levothyroxine for over 30 years with no problem. Now just take it with all my other pills as I’m making my breakfast. Best speak to doc for advice though.

[Hidden in reply to smp071266]

Thx smp. Lol as an adult I wouldn’t dream of taking anything said on here as advice otherwise who knows what might happen 😁. Sorry smp - just some “history” behind my comment 😁😁 bit of a personal “in-joke”. I should shut up really 🤫

Miles

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[alfredthegreat]

Just a thought, are you taking these tablets with or after food? I was told to take them that way.

[Pussycat432 in reply to alfredthegreat]

I haven't been prescribed ranitidine

[Pussycat432 in reply to alfredthegreat]

I've just read it's saying you should take Levo at least 30 mins but preferably an HOUR before eating on an empty stomach

[Hidden in reply to Pussycat432]

Oh umm well that’s me blown out of the water then ☹️

[Pussycat432 in reply to Hidden]

😂😂 it has. I'm going to have to ask my dr about this. And when I go to see my hep dr I will ask him too I fact I will ask everyone but not the milkman

[Hidden in reply to Pussycat432]

Pls keep us informed if you can 😼

Miles

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[Hidden in reply to Pussycat432]

PS why - what’s wrong with the milkman? Or might you embarrass yourelf 😁 ( joke) (have to keep saying that cos certain people don’t understand my SOH - could be perhaps that I don’t have a good SOH - good job I’m past dating 😁)

Miles

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[Pussycat432 in reply to Hidden]

😂😂 that made me giggle, do you know what I've never seen him, it was a coin of phrase. No I'm past the dating stage. Very happily married. And also our milkman del between midnight and 130am . So couldn't ask him if I wanted too. Hope you having a great Sunday I'm stepping up water consumption. Finding it hard going but stomach feeling not so bloated with drinking more so must be good

[Hidden in reply to Pussycat432]

If he’s del between midnight and 1.30am what’s his name at other times?

Glad you’re feeling better 😸! Get that down yer 😁

Milo

[Pussycat432 in reply to Hidden]

Oh god 😂😂 I meant del as in delivers 😂 oh I don't have a clue what his name . But I know he's not the milk tray man cos he doesn't leave any chocs I'm struggling drinking this water, but I will get there. Haven't got any blood tests though for another month so be interesting to see the liver levels

[alfredthegreat]

Yes that's correct. Just saying brother in law can't do that because of it causing him stomach problems so it's better him taking it after food than not at all!

[Pussycat432 in reply to alfredthegreat]

Yes that's very true

[GrandmaDylan]

Hi pussycat. I have just been diagnosed with autoimmune hepatitis this week although the cirrhosis diagnosis was several months ago. I am now waiting to start the steroids then AZ. I had unpleasant side effects with prednisolone when I took it for polymyalgia a few years ago. I gained weight, had horrible hot flushes and worst of all became an insulin dependant diabetic. So I am very nervous about taking it again but I don't have much choice.

I have been taking levothyroxine for about 25 years and up until a few weeks ago I took it at night with my amitriptyline. When I saw my hepatologist he told me to take it first thing on an empty stomach. My stomach has been really off for a few weeks but I'm taking beta blockers and iron both of which cause bowel issues. I wonder if the having to take the thyroxine on an empty stomach is a new thing. My mum has been on thyroxine for over 45 years and has never been told to take it on an empty stomach. In fact she has all her tablets dispensed in a doset box by the pharmacy and the thyroxine is in with her morning tablets. The only one she has separately is her calcium tablet which she takes once a week.

[Hidden in reply to GrandmaDylan]

Debs I do exactly as your Mum. Levo for at least 25 years....

[alfredthegreat in reply to Hidden]

Same for my wife Pilo. Levo for last twenty odd years. She was told take on empty stomach and she has no problem with that but her brother has terrible problems taking it. He's on 150mc as his thyroid gland has stopped producing anything. He has to take it in 3 lots 50mc a time with food and plenty of water and he still has problems with it but not as bad as on an empty stomach.

[Pussycat432 in reply to GrandmaDylan]

Oh really! I wonder what percentage take on empty stomach as opposed to with food. Both azathrioprine n pred are awful drugs to cope with but they help the autoimmune hep I have. Yes I've gained weight I'm a big bird now 91kg on Monday but 90kg now I've drastically reduced my diet by cutting out rubbish at 5 7 half that's a lot of weight . I've never thought of taking levo at night.my mum was insulin dependant diabetic dad was type 2. Thankyou for replying n wishing you well love

[Peppy05 in reply to GrandmaDylan]

GrandmaDylan I didn't know you can take Elavil (amtripylin) with cirrhosis

[GrandmaDylan in reply to Peppy05]

I went through all my medication with the liver specialist last week and he didn't say that amitriptyline wasn't appropriate.

[Peppy05 in reply to GrandmaDylan]

Thanks grandmaDylan, my physician prescribed it for sleep and chronic pain at night, I'll ask my liver specialist if it's ok to take, thanks again and Happy New Year

[AyrshireK]

Have you been prescribed a proton pump inhibitor such as Omeprazole, Lansoprazole to protect your stomach lining from the effects of the prednisolone? (you should have been). As I said earlier lots of AIH patients have trouble with azathioprine but it isn't the only available immune suppressant - folks on the AIH group take others such as Tacrolimus, Cyclosporine, Mycophenolate mofetil, Mercaptopurine (6-MP) and others.

Point is you shouldn't be stuck on a drug that isn't suiting you, lots of folks on the AIH page describe similar symptoms as yours and have been swapped over - some have gone through the full range and never find one that suits. Aza is just the first go to drug but there are other options which your specialist should be able to swap you to if you discuss your symptoms.

Katie

As an aside, have you had a DEXA scan to check your bone density whilst on prednisolone? One of it's side effects is calcium stripping leading to bone thinning. It is normal protocol to get a DEXA scan and also often supplement your calcium and vitamin D to prevent bone degredation. My hubby has osteopenia with his cirrhosis together with use of pred.

[Hidden in reply to AyrshireK]

Katie - you often mention tests that you should be offered, but am never ever offered any tests wrt meds at all. Odd this lack of consistency. Or is it that if you don’t say you don’t get?

Miles

[Hidden in reply to Hidden]

I have osteopaenia as well as AIH. I have had a DEXA scan to check on the state of my bones, but this is something that is only done every 3 years I think and is by no means a regular test, unless you count every 3 years regular. The regularity is determined I think by the progress of your osteopenia or otherwise and the amount of steroids you take also. This probably explains the difference in how often these tests are done for different patients. If you are of a certain age and the menopause has kicked in, then there will be the added effect of that too on your bones, so this will also affect how often the tests are done I would guess

[AyrshireK in reply to Hidden]

The tests differ from condition to condition. With cirrhosis for example the NICE guidelines stipulate the 6 monthly ultrasound scans for cancer screening.

Then there are those that should be done due to side effects of meds - with the AIH ones it's been largely due to reading and researching that i've found out about the DEXA scan. Knowledge is power as they say, it pays to research then you can make the most of consultations and ask for appropriate tests, ask appropriate questions etc.

Katie

[Pussycat432 in reply to AyrshireK]

Hi Ayrshire yep I'm on omperazole 30 mg in the morning for gastritis/reflux I also take calcachew which is a supplement and yes I've had two dexas since my AIH to check to see how my bones are doing . To be fair I do have regular checks I've had liver biopsy too I'm trying to remember result think was 6.1 n they have found haemogioma in my liver n I'm now going to have regular ultrasounds to measure it next one bring sept 2019

[alfredthegreat in reply to AyrshireK]

I'm on Pred but have only just had a DEXA scan because of my spinal fractures. I also have ritilin to protect my stomach. I didn't realise about the bone thinning with pred. Glad that mine has been dropped from 20mg to 5mg!

[melanie3592]

NO ONE should have to tolerate extreme nausea and breathlessness! Go back to your GP or gastroenterologist!

The reason for levothyoxine being prescribed an hour before food is because it is absorbed better that way. Some people have more problems than others with fluctuating levels and control of symptoms but it is important for everyone to take it in a similar way each day. As someone had said before splitting the dose may be useful for you to try but make sure your doctor knows first.

Is the nausea/breathlessness worse at any particular time?

Good luck.

[Pussycat432 in reply to melanie3592]

Thanks melanie, I've never known where the nausea came from it was only when someone on here said could it be levothroxine I've always suspected it was aza or pred. I can tell you though I never ever had breathlessness until I was told by gp I have gastritis n reflux . I'm non smoker .

[melanie3592 in reply to Pussycat432]

I have a friend who doesn't drink any alcohol because when he does his GERD makes him wake at night gasping for breath. Everyone is different and it might just be that, BUT any breathlessness should be investigated.

I sometimes feel that if I go back to my GP with yet another symptom then she will put me down as a hypochondriac! But the liver is so complicated and so are autoimmune diseases things cannot be left or ignored.

[Pussycat432 in reply to melanie3592]

I know what you mean melanie no I don't drink at all not even at christmas my breathlessness has been checked the drs don't seem that concerned but I am. I'm non smoker too, oh god yes I only go to the drs when it's last straw . So hard to get into my drs in the first place. Very hard to even get an appointment

[Hidden in reply to melanie3592]

Hi melanie - I worry about being labelled a hypochondriac by medics as well!! So far though I haven’t cried wolf - but my wife still calls me a hypochondriac 😁

Miles

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