Hello everyone, although I have been a member of British Liver Trust for a few years and find all of the threads helpful, I am only just starting to get more worried about my condition.
I have multiple diagnoses AIH diagnosed 2018 along with hypothyroidism, sjorens, rheumatoid arthritis and fibromyalgia. I also have a pituitary adenoma which isn't cancerous, and an ovarian cyst with fibroids , I was scheduled to have a full hysterectomy early last year but due to covid and being told that I may need a high dependancy bed and 2 surgeons due to liver ,I am still waiting. Oh yes.. I have what I think is IBS too, colonoscopy came back saying clear apart from ' cat scratches ' ,I'm in a lot of pain with this though, I get awful contraction like cramps and dreadful diarrhoea, wondering if it could be because I have a retroverted uterus.
I had the biopsy of my liver 2018 ,my gastrology haven't told me of any stages and I didn't even know about fibroscans until I read about it here ,I've not had one. Gastrologist says that my body can't take azathioprine, something to do with my genetics . Sorry I don't know more. I have only just recently started to have pain in my right side and to middle of my back , also my liver sometimes feels like it spasms ( I can't quite describe it).
I am currently having a sjorens flare , had repeat bloods and an ecg with a view to go on hydroxechlorequine. Feeling poorly with this 5 occular migraines in 2 weeks light, smell ,noise sensitivity , muscles ache and fever like chills.
I don't know what to do about my liver and am worried as the discomfort ( not actual pain) isn't going away. I have left message for gastro Dr but he just sent an appointment for May?!
Also I just found a pack of Atorvastatin in my medicine cupboard dated last year that I have overlooked and have not been taking. Reading the precautions I read not to take with liver condition, does anyone else take them and if so had any adverse effects please?
Long story short I feel like I have so much going on with my body that I can't keep up and I'm worried that I should be on medication for AIH.
Please would anyone be able to give me some advice I'd be so grateful.
Ps. I also have a mental illness...just for the cherry on the cake!
Best wishes to everyone
Rachel
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Ilovemydog7
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Hello Rachel, I have AIH and I must admit I don't understand all of what you said, so I'll answer the best I can. Firstly, Atorvastatin (one type of statin) is a medication for cholesterol and would not be used to treat your AIH. Secondly, the usual medication for AIH is prednisolone (steroid) to bring down the inflammation (when you first get diagnosed) and then once you respond to that, they decrease this (slowly usually) and add in azathioprine. If you cannot tolerate azathioprine, then they will prescribe other alternatives, although some people are treated with prednisolone alone.
It is important that you get onto your Consultant about the treatment that you are being prescribed for the AIH, since if you ever need the hospital or go to the docs or A & E, then they will need to know what meds you are taking for each condition. Also, it is important that you are receeiving treatment for this disease. AIH as you probably already know is an autoimmune condition and once you have one, there is a chance that you can develop others, which is what seems to be going on with you- since rheumatoid arthritis and sjogrens are also autoimmune. I honestly have no idea how these are treated and how these conditions overlap in terms of treatments, so I can't comment on these.
I know it doesn't help, but many people with all sorts of liver conditions experience pain in the right side (going into the back), so this is usually nothing to be alarmed about. However, you will be told that the pain does not have any nerve receptors, so you can't feel pain in the liver. The pain is likely to be due to the other organs pressing on the liver (especially if they are inflamed) or the the thin sac stretching over the liver being stretched. It is vitally important that you make an appointment with your GP (assuming you are in the UK) and tell him what you have written here, as clearly you need help managing it all and they should be able to explain all of your concerns.
WIth regard to the uterus being retroverted, this is a common occurrence and never have I had it mentioned to me that this would cause cramps & or diarrhoea, so you need to get them to investigate this. Here I would start with the GP. Not wishing to sound glib, but fibroids and cysts are common on the ovary and they usually remove the uterus at the same time as the ovaries (I'm guessing as a preventative measure), if they feel that the cysts have developed abnormal cells.
I can totally sympathesise with so many things going on that you feel overwhelmed, so here's what I would do.
1. Book face to face with GP.
2. Ask what meds you are taking for AIH- if none, get them to schedule an appointment with gastro straightaway.
3. Get GP to check what meds you hsould be taking for all your conditions and then chuck anything that isn't needed any more (return to pharmacy for safe disposal)
4. Contact Gynae unit that initially scheduled the hysterectomy and ask what has happened to the surgery date.
5. Ask GP to get bloods done for a full liver panel (LFTs ) as well as kidneys and also ask for a CA 125 test (this can be indicator for ovarian problems, but can also be raised with liver disease)
5. Currently, don't worry about the statin, but do ask why you were prescribed it. Most medications will say do not take if you have liver disease, but many of us take those meds. You would find it very difficult to find many meds that don't say that on the leaflet.
6. Don't worry about the fibroscan. Most people with AIH don't get one- they aren't needed and don't really tell the docs anything they don't already know.
There is a Facebook group that specialises in AIH. If Katie doesn't post, then I will do it later.
Sorry that you have so much going on and I do hope that the advice was of some help. Good luck and get the AIH meds sorted pronto!!! Wishing you well.
Well, I think CarpeDiem11 has answered your worries wonderfully.
All I would say to add I questioned my meds (I am on atorvastatin) and was told the benefits of taking outweigh the benefits of not taking it!
O, and I get that pain, a pinchy stabby pain that doesn't last too long. No answers, I just press/hold it until it goes away.
Oh, and it looks like you have a medical team like mine. I see everyone on here discussing all these numbers and diagnosis - all I got was stage 3 fibrosis, lose weight.
Hi Ilovemydog7 - I can see that you have received lots of great advice and support (looking at you CarpeDiem11!). If you want a supportive chat with one of our nurses, our helpline is open Monday to Friday 10am to 3pm on 0800 652 7330.
I hope that you get some answers soon - it certainly seems that you need some clarification around your disease and its staging.
Only one thing to add to CarpeDiems excellent advice: pharmacists are also excellent at reviewing your medication, telling you what it’s all for, how it interacts etc, and it can be easier to pop in and see them than getting a GP appointment.
Don’t worry about the liver pain, we all get it on here and it’s not an indicator of how well or poorly your liver is. I just give it a rub, change position and it tends to go away.
I too have AIH and I agree with what has been said by the others here. Just want to say that you should go ahead and have your liver examined for fibrosis. Stage 1, 2 and 3 of fibrosis are not as worrisome as stage 4 (also known as cirrhosis). The reasons can be explained by your doctor once you have your Fibroscan. It's worth knowing. Once you know, you can better understand the correct protocol in your case. Without knowing, you and your doctors will be in the dark about the best course to take. You had biopsy in 2018 and no one said anything about Fibrosis to you so maybe you had no fibrosis. But that was 4 years ago. Things can change with this disease, especially if the autoimmunity is attacking your liver quietly. Best to know. Then act.
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