So a lot has happened in the last few months for me.
I retried methotrexate again and it had to be stopped due to raised liver enzymes again. So this med for me has been ruled out now. I then tried in August sulfasalazine. I managed to get up to 2 tablets 2 weeks into it. Sadly that raised my liver enzymes to 342!! So that was then stopped.
I was then put back onto steroids whilst I waited for an in person appointment at Guys. I went to that appointment last week Tuesday. He has recommend I now try azathioprine. He wants to do it very slowly. So 25mg for 4 weeks, 50mg for 4 weeks then 75mg. Has anyone else tried this med and has any advice on it?I have to wait for his letter to see if I have an enzyme that he did a blood test for. I also have to wait and see if my GP will do my blood monitoring. As I have no faith in my local hospital being able to monitor me properly as it took me making 2 phone calls for them to tell me that my enzymes were 342 in the summer. The consultant at Guys said if this one doesn't work then we might be looking at infusions. He also gave me reducing steroids for about another 18 weeks. So hopefully I will have started the new med and be seeing some benefit from it by the time my steroids end. I'm hopeful that I will eventually find something that works. I also had an ultrasound of the abdomen last week to see if there is anything wrong from with my liver and why I keep getting raised enzymes on such small doses of these medications.
I've been back to work for nearly 4 weeks now in a new classroom. It is currently going very well. I put this down to the benefits on the steroids. I've also started an open university course. I'm super excited and interested about it. On Saturday I had a DSA interview to see what extra help I might get because of my lupus and arthritis and the results were very promising from it.
I just wanted to say thanks to all of you over the last 7 years. I never thought I'd be where I am now and I know that largely has to do with all the lovely people on here who have with me since the start. I hope you are all doing well!
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LouLamb
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Oh geez Lou, you’ve gone through a few meds. My liver is also sensitive. I couldn’t even take meloxicam. Unfortunately, azathioprine also caused liver toxicity for me. I felt great on it. Didn’t know there was a problem until I got my labs back so I had to stop it. Had virtually no side effects from it, not even GI problems. Maybe headaches when I got to 100mg.
Thanks for sharing this. The more I read both on here and in the academic press it seems to me that it is alot of trying things out and seeing what works. My own Rheumatologist said we have a plan, see if that works and if not we create a different plan. Key to all of this is we are the experts of our own Lupus. Just because someone else has benefited doesn't mean we will and vice versa. Where you have a clinician that listens this can work, but is evident on the forum not everyone has that support. I hope this new regime works for you and good luck with your course
Hi LouLamb, I haven’t tried that med, but it sounds like you’ve been having a frustrating time with all the complications—and now having to gradually build up your dosage over a period of months! I feel for you! I hope your efforts yield some results, and if they don’t, I hope it helps you and your doctors get closer to a treatment that is actually going to work for you. Here’s hoping 🤞🌈🌈🌈
Good to see an update from you, LouLamb. You've made so much progress of the years!
I have tried azathioprine but my liver enzymes were raised so I was switched to mycophenolate mofetil. It suites me very well! Everyone reacts differently. I hope you find the right meds soon. It is trial and error for many of us.
Yes, it is in tablet form. The brand name is CellCept. I thought maybe you had mentioned previously that you had also tried CellCept. Hopefull the Aza will work for you without any issues!
Hello LouLamb. It’s so nice to hear from you again. I’ve been wondering how you were doing as it’s a long time since I’ve seen anything from you and you started on this forum about the same time as I did. I’m delighted your life/career is going so well . You have done amazing things over the last seven years. But I’m sorry you can’t find a medication to suit you. I’m on methotrexate by injection and I’m pleased to say I’m tolerating it well so it is such a shame it’s not the same story for you. I really hope azathioprine works for you . Good luck with the Open University, with your track record I’m sure you’ll do well. You go, girl!
Hi loulamb, so sorry that you've been having liver enzyme probs with meds. Fingers crossed that Aza is better and for your ultrasound results. They're so right to try to find cause.
I love it Lou that your back at work and doing an OU course. You are such an inspiration to us and I just hope it all goes well for you. Keep us posted and keep safe. Xx
You deserve it loulamb for your enthusiasm and hard work and not wanting to let lupus get in the way of your life. Its so inspiring!. Keep safe and posting. Xx
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