Had my rheumy nurse appointment today. Well it went a lot better than i could have expected. My liver result was 120 and has gone down to 90, so it is slowly coming down and she has told me it will sort itself out.
She has advised for me not to be put back on methotrexate at all, as it is not the drug for me. She has given me 2 leaflets for 2 different meds which she thinks the consultant might try next. One being with an L which causes liver problems so will probably be the last one to try. One that begins with an S something Acid i think.
She wants the consultant to see me ASAP, so she's trying to push through an appointment. My one was for January i have currently got a new one for November but the nurse wants me to be seen within 4 weeks really. Otherwise we could be in big trouble without me being medicated to try and help the lupus stuff.
I am hoping to get an appointment sooner and to hopefully discuss new meds. It is funny because when you go to the first appointment the only ones they want to mention is methotrexate or hydroxy. So i never realised there was more drugs out there to help. I thought i was at the end of my meds journey and nothing could be done, but i was clearly wrong !!!
Also I have had lots of hair loss recently, I think it started around the time the liver result went up a month and half ago. So i am hoping when the result goes back to normal the hair loss might stop as well. I have not had hair loss pre diagnosis 3 years ago .
Written by
LouLamb
To view profiles and participate in discussions please or .
Thank goodness for the sense of the rheumatology specialist nurse!
The first is probably leflunomide but I can't think of what the other might be.
The first thing I noticed with mtx was hair falling out in small chunks - it happened in the first week. I took it for 4 weeks and then stopped (I was going to Korea and had told the doctor I wouldn't take it during the trip). The hair loss slowed within a couple of weeks of stopping and is back to normal now. I took extra folic acid even while I was on mtx and kept taking it after I stopped. I think it probably helped (I asked the GP who is rheumy trained and she thought it was a good idea).
There is a way to wash leflunomide out of your body if it does cause problems. But there are lots of things to be tried - mtx and hydroxy are the start of the list. And needless to say - the cheapest!
My Rheumy is super lovely and tells me all the time not to worry if a medicine does not work as we still have other options and various amounts. I hope they'll figure out what works for you X
I’m just waiting for the appointment to find out now. I’m hoping i can fit in even sooner. As I’m starting to find morning more of a struggle now as I’m getting achy. I’ve not had any meds for 5 ish weeks now .
I have been on Methotrexate for nearly 12 years. I saw the Professor at the Lupus clinic today and during my appt took the opportunity to ask about you and he said he wouldn’t be worried at all by a liver reading of 90 unless it was the Bilirubin. Hope you get an appt soon with the doctor. Good luck.
It’s a test related to the liver, everyone has bilirubin but high levels can indicate liver disease among other things. Your liver result may not have related to bilirubin. Ask the doctor to talk you through it but look at a reputable website for more information.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Outrages at appointments 
Update from appointment 
Gastroenterologist Appointment Review 
