Hi I am new to this site.....but have been on the Liver Trust site for a little while-I am also on the Lupus one.
I was finally diagnosed with Lupus in Jan 13 after many years of suffering and wrong diagnosis of 'Fibromyalgia'-during this time I did take a lot of Ibruprofen/Paracetomal for my joint pain (as the pills I had been given for 'fibro' did nothing for me)...... When first diagnosed with Lupus I was put on Methotrexate-and had to have regular blood tests-to monitor this-after about 8mths I had a phone call from the hospital to stop taking the Metho immediately-which of course I did-due to high Liver Enzymes-I was then put on steroids.......I then started suffering from constipation, (something I have NEVER had-usually I have IBS which I put down to complication of the Lupus)- and had terrible noises coming from my belly!! My GP examined my liver area and said it felt enlarged (I did not have any pain in that area-just sensitive to the touch) sent me for a scan and I went to see a 'gastro' Dr at my local hosp (same hosp as my Rhuemy for Lupus) when I got to this appt the gastro said that although there were signs of damage to my liver (he did not explain what) asked if there was any other 'auto immune in my family' (my mum is type 1 diabetic-also has liver probs-but really does not ask many questions-she just takes all of the tablets given to her-bless her!!) and said that they would monitor me through blood tests done by my Rhuemy.
Fast forward a couple of months and I had to have a large dose of antibiotic due to being stung by an insect.......half way through this course I felt my Lupus rising-and went into a full Lupus flare, also became VERY constipated again, and my urine was and is very dark and smells of liver!!!- I felt absolutely 'wretched' nauseous-could not eat-and had pain all over-could hardly get out of bed - was sent for bloods again-and again all of the tests came back with very high Liver Enzymes ( I keep asking for print outs-but am not given them-my GP (who I DO have a lot of faith in) read some out to me:-
These are just the ones I know-and I believe they have been much higher than this at points!!!! This was the first time I realised how bad the situation was-I came home 'googled' these results and went into shock a bit!!
My GP has now arranged for me to have a liver biospy-but I still have 2 weeks to wait for this-and in the meantime I am not taking any painkillers at all (unless truly desperate - like the other day I took some paracetamol as had a family day out and did not want to spoil for everyone else) For anyone that does not know about Lupus-it causes terrible joint pains-My Lupus does seem to have calmed down now-but I do still have very bad days-My constipation has gone (although I do not feel that it has gone 'back to normal'-or how I was before-My urine is STILL very dark and smelly-esp in the mornings (sorry for the graphic detail!!).....I still do not have any pain in the liver area and now it does not even feel sensitive to the touch.
I have another appt with the 'Gastro' on Thursday 4th Sept (my biopsy is not till the 15th Sept)- this was pre booked thinking that they would have the results from the biopsy-BUT I am still going to go to this appt as I have a LOT of questions, and getting an appointment for the NHS around here is a nightmare........I know that they will not know exactly what is wrong until the results of the biopsy are through, but I do at least want to know what my blood readings are now-and what they have been (my GP said only the hosp can print them off?) But surely I have a right to know this so that I can monitor it myself?? And any advice on what to eat-what to avoid.
I will add that I do not drink ANY alcohol and have not done for about 10years-I had loads of tests done in 2008 when I was hospitalised with pneumonia/pluersy-liver/spleen/kidney scan and nothing was flagged up about my Liver then (which now looking back pneumonia is often a symptom of LUPUS, but all they said at the time was they could not find a 'cause'for it!!)
I feel that I have quite a 'healthy diet'-plenty of fresh fruit and veg-I also take 'Milk Thistle' on a daily basis.
I am sorry about the long post-but there was lots to 'get out' and I am truly worried about what could be going with my liver-if anyone has any advice on what I should ask at my appt on Thurs I would be really gratful!!! Julie