New member.

[Lisa6161]

Hi all, hoping to share and receive advice, as best as I can. My diagnosis has been a shambles, and I feel I have been forgotten again! I suffer with lupus, and since my diagnosis, (2005,) I have taken many meds. Fast forward to 2014, and my constant elevated ALT, was investigated. I had a liver biopsy, which showed damage caused by methotrexate, which was a lupus drug. My GP told me that, and I never had a follow up appt with gastro again! NAFLD was also found. Last year (2019,) my lupus dr demanded gastro see me, as my ALT was 103. It's never normal, but my GP had the opinion that it was, my normal. Finally saw a gastro dr last November. I asked if he had my biopsy results from 2014. He said yes, and that it showed fibrosis stage 2. Being as that was 6 years ago, naturally I am worried. He said on physical exam that he can feel some stiffening of my liver, and that his opinion is advanced liver disease. I am waiting for a fibro scan, and I said I would be willing to have another biopsy. Again, I have heard nothing. Now that NHS are looking at other health issues, do you think I should pester them about it? I no longer take the damaging meds, but take prednisolone everyday, and other prescribed meds. Also, the top area of my stomach, is permanently protruding, and I do get RUQ aches. Alcohol isn't an issue for me. I take too many meds and wouldn't be safe, if I did, because of reaction. Sorry to have 'gone on a bit,' but if I was F2 6 years ago, what am I now? Gastro dr told me only 4 stages then cirrhosis.

[Laura009]

Hi Lisa. While taking methotrexate you should have been having monthly blood tests. One of the side effects of metho is it can reduce liver function. The blood tests would show if it causing this. If it is then you would be taken off it, weekly blood tests carried out until you liver function is back within a normal range at which point you can take it again and resume monthly blood tests. It is better to inject metho than to take it orally as less of it enters the digestive system. My husbands blood tests show metho is no longer affecting his liver. However he is on blood thinners for life as metho can also cause blood clots which he has also had. Unfortunately with any autoimmune disease medication is essential the problems arrise depending on how our bodies react to them and certainly not due to NHS incompetence.

Best wishes

Laura

[Lisa6161 in reply to Laura009]

Thanks for your reply Laura. The shambles I referred to was the fact that, I spent all day in hospital, having the biopsy, and never heard another word. I did have monthly bloods, and these were accepted as my 'normal.'

The biopsy showed that my liver would not accept any immunosuppressants. This info is what my GP found out, and my rheumy consultant. The metho also damaged my lungs. I was left 2 years on that drug, when finally I had a lung function test. It was my phlebotomist who said I should ask for the test. I know we all react differently, and metho did help me, so I was disappointed to stop it. Thanks for your reply.

Stay safe.

[Hidden]

Hi Lisa,

If you are in the UK why don't you call the nurse led helpline on 0800 652 7330 and we can have a chat?

Best wishes

Trust1

[Lisa6161 in reply to Hidden]

Thanks yes I will.

[Hidden in reply to Lisa6161]

great, we are not too busy yet this afternoon....* cue hundreds of calls now*!!

[Lisa6161 in reply to Hidden]

I'm off out to meet my son in a park, in a mo, so will call Monday. Thanks I will call.

[Hidden in reply to Lisa6161]

We are closed for BH Monday but open again on Tuesday

[janeytrace]

Hi might be worth booking a medication review with your pharmacist they are allocated more time than the drs who just go on lab results. There is such a thing as polypharmacy (some word like that) where taking too many medications can cause problems especially when they have a longer half life and metabolise in the liver.

Myalgia is a common side effect. Depending how bad your pain is and whether you can tolerate the side effects of pain killers it might be worth weaning off any medications which aren't totally necessary to keep you alive under medical supervision of course.

I take about 8 medications and pharmacist said I could try just taking the levothyroxine which can't be stopped.

Interestingly I lost weight when I stopped some of them. However I started getting more I'll so had to go back on them as ended up in hospital. But this isn't the case with everyone and it depends how your liver was affected in the first place. Good luck and best wishes with getting the help you need. It may well not have progressed hopefully and could even be reversed still.

Self care and definitely don't worry about whether it's ok or not during these times to contact them you definitely should. They can consult online and will have you in if need be using strict safety measures. You got this, keep persevering, you know if you don't feel right and drs have an oath to help anyone suffering medically. X

[Lisa6161]

Hi and thanks for your reply and suggestions. As you will see in my replies, a trust nurse(I think) replied and I called her today. She has urged me to contact the hospital, and that I shouldn't leave it, so I will on Tuesday.

I read your other advice about meds. Interesting about the weight loss. I too, take thyroxine, and unfortunately, Donald Trumps hydroxychloriquine!!! Because I cannot tolerate other immune suppression meds, I have to have steroids and other anti inflammatory drugs. This helps to dampen my lupus activity. One way or another lupus has caused a lot of damage to my body, and also the meds. Because my ALT has been 101 then 103, and GP didn't even call me in, my rheumy acted on it. Are you on just liver site, or lupus or both. Wasn't sure why your pain meds. Sorry if too nosy. Anyway I will post again with an update ( hopefully) x

[Isabelle2]

Ah but you took it first, for an excellent reason! I hope things get better.

Isabelle xx