Nurse Appointment : Had my rheumy nurse appointment... - LUPUS UK

LUPUS UK

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Nurse Appointment

LouLamb
LouLamb

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 .

18 Replies

Glad that it went better than expected. Best wishes Kevin

LouLamb
LouLamb in reply to Kevin53

Thank you

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).

Looking forward to the continuation of the saga!

LouLamb
LouLamb in reply to PMRpro

Yes that’s the name of the first drug leflunomide. I read that it can stay in your system for up to 12 months after you stop taking it !

I have a very long hair and would like to keep it. Once the hair failing out stops it thinking of getting a little trim to make it easier to wash .

PMRpro
PMRpro in reply to LouLamb

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!

LouLamb
LouLamb in reply to PMRpro

Nurse told me there are many ones to try and there are even more after that. So I’m hopefully that I’ll find the right one for me.

She said that we don’t always get it right the 1st, 2nd or even 3rd time

Hidden
Hidden

The other could be Sulfasalazine perhaps? Used more often for RA but it does start with S.

LouLamb
LouLamb in reply to Hidden

It might be that . I’m just being really lazy and not getting the leaflet out of my bag 😂

Aw Lou! Glad to hear some improvements.

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

LouLamb
LouLamb in reply to Penguintaz

Thanks x

The two drugs were probably Leflunomide & Sulphasalazine.

Both work well for some , but not for others.

Unfortunately with all the drugs we take it's a case of try it & see.

Hope whichever your Rheumy chooses to give you is 'the one' for you.

LouLamb
LouLamb in reply to AgedCrone

Yes that’s them !!

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 .

AgedCrone
AgedCrone in reply to LouLamb

Keep in close touch with your Rheumy nurse LL.

When I was still not settled on drugs that suited me , I'd call every couple of days, & I often picked a Rheumy cancellation.

She who becomes a pest get the appointment!

Keep on it LL.

LouLamb
LouLamb in reply to AgedCrone

Thanks I will ! x

Hi LouLamb

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.

LouLamb
LouLamb in reply to wallock

Hey ,

What is bilirubin ?

Hi

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.

LouLamb
LouLamb in reply to wallock

Oh ok thank you

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