Me and Methotrexate

[LouLamb]

Hi all,

So my liver went up again a month ago because of the methotrexate. My result was 117! I was told a result of 26 in considered high so mine was off the charts. The nurse and Guys hospital spoke to consultant and I'm retrying it again for the last time. So I took my 2 dose of 7.5mg tonight. I have bloods scheduled for next Tuesday. If my liver is raised again I will have to stop it indefinitely.

I only had just returned back to work at the beginning of June. I managed 2 whole week and a day. I'm now signed off until end of next week. So 4 weeks in total due to a lupus flare of pain. I believe this is because I had stopped the methotrexate for 3-4 weeks and my steroids are now only 5mg which are ending next week as well. So if all goes well I will be in work for the last 3 days of term. Which I am hoping for as right now I feel like all I've done is stay home this year. It's typical that the time I had to stay at home I was on good steroids and medication. Now that I have to go back into the world it's all slowly falling apart. Got a few plans for the summer holidays and am hoping to be able to do it all.

I'm thinking of going for a short walk tomorrow to the end of the road and back. I need to do some moving I think and slowly try to readjust to pain that I haven't had for 6 months. It's so hard when you've been somewhat pain free for so long to go back to usual daily pains. Shame steroids of 10mg and higher cannot be a forever fix.

Just needed to get some of my thoughts out of my head otherwise I'll be up all night again thinking about it all!

Hope everyone else is doing well.

[PMRpro]

Hi Lou - sorry to hear you're suffering.

However - I have been on pred for 12 years now, at least 2/3 of that at doses above 10mg. I have no identifiable adverse effects - no cataracts, no loss of bone density (and I didn't take a bisphosphonate), no sign of diabetes and although I did gain weight, I lost it again (a low carb diet can work wonders). What I have had is a decent QOL and been able to function for all that time and I couldn't have without pred.

There are plenty of patients on IRO 10mg pred for life, they have no choice.

[LouLamb in reply to PMRpro]

I've seen lots of people online saying they have steroids all the time. For me personally I don't feel like I am at that stage yet. I'm only 21 and haven't tried many different treatments in the last 5 years. This is the first time I'm trying 2 meds at the same time as well. I'm hoping to find the right mix.

[lupie46]

Don't feel too down. I had to stop methotrexate. I'm now on MMF or mycophenolate mofetil and it's really helped.Good luck with the next step

[LouLamb in reply to lupie46]

Thank you.Do you get any side effects with that? I'm currently feeling sick today because of the methotrexate.

[lupie46 in reply to LouLamb]

I seem to be fine on it. That said, I was also fine on methotrexate as long as I had it with food, and never, ever touched alcohol. Hope you find what's right for you

[Sara_A]

Hiya, I have tried several now I'm currently ok on 25mgs methotrexate injection weekly. I had azathioprine which raised my liver enzymes (they can go into the thousands so I shouldn't worry too much!) And once u stop them they come back to normal. I stopped the azathioprine and tried again but it did it the 2nd time so stopped it.Then went onto mycophenolate which worked well for a while less lost its affect so stopped that. Then methotrexate tablets made me feel too sick so am on injections. I am on steroids daily have been for about 15 yrs at least non stop diagnosed aged 21 now 42. Dose 10mgs to 30mgs.

Then needed something more so went onto sulfasalzine and oh my goodness I was so bad on this I spent 2 months in bed with fatigue off the scale!! Couldn't walk to the end of the rd or look after my kids nothing! I've never been so unwell. But I think it did start to help my joints!!

So now I'm waiting to see what's next....biologics or leflunomide we will see x

[LouLamb in reply to Sara_A]

I tried leflunomide but that raised my liver as well. I know there are still quite a few things out there for me to try.

Hope you find something that works for you .