NITROFURANTOIN INDUCED AUTOIMMUNE HEP AND CIRRHOSIS.

[margaretkirkman]

Hello, I'm new to this site. Diagnosed July 2012 with AIH and C. What a shock. Went through the horrors of Pred treatment, and finally staballised a year or so later. January 2014 I transferred from local Gastro Clinic to Hep at John Radcliffe in Oxford, who were brilliant. They told me, looking at my meds and test history, my disease was possibly Nitrofurantoin induced!! Lots of research since then, shows GP didn't implement close monitoring of LFTs during 4 plus years of meds. How can they get away with this?

The purpose of this post is to try and find others who have been dealt this life changing, life shortening PREVENTABLE diagnosis, following long term prescription meds. Is there anyone out there???

Maggie K

[AyrshireK]

Hi Maggie, welcome to the forum, a place of amazing information and support.

My hubby is now waiting for transplant due to (docs think) AIH. We didn't even know he was seriously poorly till a massive upper GI bleed and cirrhosis diagnosis (tee total and very active and fit). They have never pinned down what the trigger was for his AIH although we strongly suspect it was probably a long term prescription for an anti-biotic his GP just kept dishing out for acne instead of referring him for dermatology appointment - I guess we'll never know!

For some people it is a long term medication use which triggers it, certainly on the AIH support forum and facebook page people have written recently about which meds are suspected of triggering theirs.

A lot of knowledgeable people with AIH who have recently established an AIH support group with its own forum, website and facebook page and this weekend are meeting up at Birmingham for a seminar with presentations by Dr Gideon Hirschfield (leading light in AIH treatment).

Might be worth joining their site too as they are AIH specific.

autoimmunehepatitis.org.uk/

All the best to you, Katie

[margaretkirkman in reply to AyrshireK]

Hi Katie, soooo pleased to hear from you. Really sorry to hear of your husband's situation. You may well be right in thinking long term meds for acne, might have been the inciting agent.

Getting no sense from GP, I have been investigating AIH since early 2014, and have a BNF book here. Have discovered case reports from the 70s through to 2014! Medication induced AIH is not breaking news,the Doctors aren't on the ball!! What was the medication, how long was it prescribed, was your husband monitored???? Please respond, and I will endeavour to clarify this situation.

Regards Maggie K

[AyrshireK in reply to margaretkirkman]

Unfortunately we don't know the name of the specific anti-biotic and hubby's memory isn't too great it was so long ago, initially he was prescribed it for a month but the spots came back immediately the course stopped so doctor then just put him on them for well over a year perhaps more (we don't know the specifics). He was never monitored, his doc was one who liked to deal (not deal as it turned out) with everything in house so he was never referred elsewhere. Very few blood tests ever in his life and he was certainly never informed of any results.

We have no idea if this is the trigger, as I say I guess we will never know. Hubby wasn't a frequent flier patient (hates all things medical) and never drank, never smoked, fit and active, very serious long distance walker. We were completely taken aback by a sudden diagnosis of cirrhosis - only 2 1/4 years ago and now we are awaiting transplant.

I know on the AIH facebook page there was an article about a lass who nearly died of liver failure due to the prescription meds she'd been taking. This is the article I was referring too lep.co.uk/news/antibiotics-...

Worries me that none of us know what we may be walking about with.

All the best, Katie

[margaretkirkman in reply to AyrshireK]

Hello again Katie, you can fill in the blanks by asking for your hubby's GP records. A simple letter requesting these, and a small cheque for their fee - I paid £10 for mine, October 2012, should see the file winging its way to you. From this you can see the name of the drug, period of prescription, and test history. Certainly worth investigating.

From my notes I could see I was prescribed Nitro for 4 plus years, no monitoring or testing, as advised by BNF/NICE, and a deranged LFT in 2010, amidst being treated for so called depression, wasn't advised to me or acted on. Hepatotoxic meds continued to be prescribed for a further 22 months! Some GPs aren't doing their job, and hold their cards close. Having completed my research, and found repeated departures from Safe Prescribing and Good Practice, I requested an investigation into my treatment with GMC and NHS England, and have instructed a top flight firm of Solicitors to sue for medical negligence.

Been in touch with the lass you referred to. Shocking tale. Now in a wheelchair and lives in a 3 floor house. Whilst she knew Nitro was the inciting agent, she had no idea that the GP had failed in repeat prescribing without monitoring. She now has the information to move forward with investigations and claim for negligent harm.

Happy to help you and your man, in any way I can.

Regards, Maggie K

[AyrshireK in reply to margaretkirkman]

Hi Maggie, thanks for that. We'll not be looking to chase matters. It's done now and we need to move on. Daily life, waiting for transplant & battling DWP for benefits is enough to handle just now.

I guess even checking how long it was prescribed for and that is never going to prove that it was 100% the trigger, we don't know when the AIH was triggered or how long it went on for unchecked.

As I say we've enough of a battle on just now. But, all the best with your research & your own condition etc.

Katie

[Bolly]

Hi Margaret, I have AIH, no idea how that came about. What's the C in your first post?

[margaretkirkman in reply to Bolly]

Hello Bolly, the C is for Cirrhosis, boo hoo. I am interested to know your story. Were you on long term medication prior to AIH?

[Bolly in reply to margaretkirkman]

No Margaret I wasnt on any long term meds. The jury is still out as to definite causes of AIH, sometimes it might be genetic or it might be the person is prone to autoimmune conditions. There is a facebook page for AIH patients facebook.com/groups/AIHorgUK/ where many people have other autoimmune conditions like rheumatoid arthritis, psoriasis, etc.

Long term medication can damage the liver without it being an autoimmune condition. AIH is your immune system attacking your liver, nothing to do with medication. But liver damage can be caused by strong medication or high doses of medication taken over a period of time (accidental paracetamol overdose is a not uncommon cause of liver failure).

[Bolly]

PS. Were you taking Nitrofurantoin for repeated UTIs?

[margaretkirkman in reply to Bolly]

Yes.

[Bolly in reply to margaretkirkman]

The it could be the medication which has caused the damage - how many years were you taking this, was it all the time or periodically. The patient leaflet does say the drug can cause jaundice and liver inflammation (along with other side effects). I'm not sure where the responsibility lies with monitoring our health when taking strong meds - should we ask the doctor for blood tests or should the GP periodically call everyone in who is taking regular medication? I dont have an answer I'm afraid.

[Bolly]

PPS I think if you read the patient leaflets of all prescription and non-prescription meds they all warn of potential liver damage. Its a sort of 'cover all eventualities' clause on the paperwork! Of course we cant all be monitored for liver damage every time we take a course of anti-biotics or other meds, but I would have thought if one was seeing the GP or a specialist repeatedly for the same condition and being repeatedly given the same medication it would be appropriate to at least have a FBC and LFTs done perhaps yearly. Interesting Horizon programme on the BBC recently about research into allergies and theory that antibiotics early in life can wipe out certain good bacteria in a persons gut and also damage the development of the immune system.

[ancientadolescent]

I would ask to be referred to a consultant haematologist. Gps are not the best people to attend to problems like yours. I am suffering from itp which ia an autoimmune disease and I am seeing a consultant heptologist and a consultant haematologist.

[ancientadolescent]

Gps are not the best people to attend to a disorder like yours. I am suffering from itp which is an autoimmune disease and am being attended to by a consultant heptologist and also a consultant haematologist. Ask to be referred.

[mrsmerlin]

My AIH I was triggered by a particularly bad bout of glandular fever when I was 19. Pity it didn't show up until thirty years later.

[deeksy]

Hi Maggie. I’ve only just come across your post and wondered how you are getting on?

I’m currently going through treatment for drug induced liver injury from Nitrofurantoin. I was taking the drug for two years prior. Also I’m in between John R & MK.

Look forward to hearing from you 😊