Pretty Angry right now!!! Why was I not warned!!!!!

I was diagnosed with Lupus in Jan2013 and to cut a long story short was put on Methotrexate -was on if for 8mths (I will add at this point that I am totally TEE-TOTAL and have been for about 9/10yrs) - then got an Urgent call from my Rhuemy to STOP immediately, as Liver readings were very high (I had done exactly as Rhuemy asked and had EVERY blood test I was told to!!!)-then been on steroids and different meds for Lupus - around Jan 2014 was feeling really unwell and GP examined me and referred me for a Liver scan,as he said my liver was enlarged - finally saw a Heptologist at same hosp as my Rhuemy-they said there was scarring BUT that it was quite steady-not getting any worse-was probably related to my immune system and did not need any treatment (the letter mentioned smooth cells-which I looked up and can indicate AIH)-and that I did not need to go back as they would monitor me with blood tests through my Rhuemy-I started a new drug for my Lupus that I had sourced myself (LDN) and was doing brilliantly-then about 4 weeks ago I got bitten/stung during the night (not sure by what!!) and my leg really came up bad- I had to go to the walk in centre at local hospital where I was given a really high dose of Antibiotics-one lot of 500mg 4xdaily-and a different lot of 500mg 3xdaily (I had told the nurse about my liver/lupus)-half way through the course I could feel my Lupus rising - then got thrush and was given another antifungal/antibiotic- By last weekend I felt just SO ill (I thought it was a LUPUS flare) could not go to work-on the Monday I had a blood test for my upcoming Rhuemy appt (in August) went back to work last Saturday( I work weekends) and had to be sent home-when I got home there was a letter from the Rhuemy saying that my Liver Enzymes are really high again.....Went to my GP this Monday and have been signed off for 2 weeks- am still feeling really rough-hot sweats-heart racing-joints aching-hard to go to the toilet and wee really dark-feeling nauseous and not at all hungry...And I know that it was the high dose of Antibiotics that set it off, plus, I had taken painkillers for my (what I thought) Lupus flare-which causes aches and pains-WHY did the Heptologist not warn me about painkillers/antibiotics??? Am just so ANGRY!!! I am now really worried that my liver is damaged to the point that it won't heal, and feeling really let down by the NHS-my GP (who is good) is now writing to the Heptology dept to find out what to do next-but they had not even bothered to tell him that they were going to monitor me through the Rhuemy-he has heard nothing. AM VERY ANGRY!

4 Replies

  • Hi bam and sorry to hear of your problems. I'm sorry I dont know much about Lupus but I do know that methotrexate is a pretty harsh drug with side effects. I'm no expert but I think that its normally ok to take painkillers with liver problems as long as you stick to the recommended dose and as long as you dont have cirrhosis (which I assume you dont even though your enzymes are high and you have some inflammation). Generally we are advised to use low doses of paracetamol for pain relief rather than NSAIDS but I dont know what Lupus patients are advised re pain relief. Likewise antibiotics, if you have liver disease you can still take antibiotics, though many people have allergies to some especially those derived from penicillin. You do sound quite poorly and I am concerned you say its difficult to wee and your urine is dark which sounds like either a UTI or kidney issue, have you discussed this with your GP since the symptoms started, a UTI can give you flu like symptoms.

  • I am not a medical expert, but have dealt with my own liver disease for would seem to me the first obvious thing for you to do is find out how damaged your liver actually is. That would require a liver biopsy or a Fibroscan. I would go for a Fibroscan, less invasive and as you have had a very stressful time(keep those cortisone levels down for the lupus and and liver damage) there is little to go wrong with a scan compared to biopsy. Even if you have to pay for the scan, at least it will reveal how much damage there is. Make sure a specialist doctor interpret the readings for you and that you make a follow up appointment as to what action to take next. In the meantime, it is good you are not drinking...look at your diet in relationship to additional stress on your liver...and you are right about painkillers being so bad for a damaged liver, so avoid all medications that put a strain on your liver. When you go to your doctor always write down all your questions ahead of time if you don't do that already...anger can cloud judgement..and no one is going to look out for your best interests better than you...And, what you want is to feel as good as you can for your condition(s) and live well. There is loads of good medical information on Lupus and liver disease worldwide that can keep you informed and give advice to optimise your health. The liver trust uk has a terrific website full of links, helpful advice and diet recommendations, if you haven't already clicked around the And is very useful as well.

    Both are free to join...I hope this helps...obviously your doctor will know more about your condition and advise you best in the future. good luck!

  • Hi the dark urine can also be a sign of liver problems. Also light coloured greyish stools. Things can change very quickly with the liver in my experience so i recommend keeping on top of the situation as much as is possible. Hope things work out well for you.

  • Hi thank you to everyone that has replied, I really do not know what to do now, all I have done is sleep-in bed by 9.30pm last night-I woke quite early and had a bath, but since I just have absolutely no energy, and seem to dose off every so often. I have rang my Lupus nurse and she is sending another blood test for me to have done, to see if the levels have gone down at all-also is going to talk to my Rheumy, I asked for my exact readings from the last blood test-but she said she would not comment as she did not want to get involved-she also said that she understood why I was so worried.......I am still feeling very nauseous, although I have managed to eat something-2 slices of toast this morning-and just some crackers for lunch. I have had stomach pains, my wee is still dark (and I am sure that is down to my Liver) and I am also very constipated. My boyfriend wondered if I should go to A & E (but I know they are likely to know very little about Lupus or Liver disease, but I suppose they would possibly do a scan. I am also feeling quite confused - brain fog-this can be a sign of Lupus but I now know that it can be down to the liver as well. I really do not know what to do ;-(

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