GCA/PMR since Dec 2018. Referred to rheumatologist in Feb 2020 because of repeated flares on prednisolone. Initially I resisted the offer of methotrexate and tried to reduce prednisolone gradually, however after more flares and unable to get below 12 mg prednisolone I opted to add Methotrexate as a steroid sparing agent in August 2021.
This seemed to have little effect on inflammatory markers and made me feel nauseous so it was stopped in March 2022.
In May 2022 I started taking Leflunomide as the steroid sparing agent . This did improve things and I managed to get to 7 mg before another flare in December 2022. This I managed by adding 5 mg for a week and coming down to 8mg and then continued to try and reduce slowly. A telephone consultation with rheumatologist did not approve of my actions and arranged to see me face to face in March 2023. I continued to reduce and was on 5 mg going down to 4 but experiencing another flare when I saw her. Following a blood test showing high inflammatory markers she told me to increase to 20 mg until she had the results of a CT scan she would arrange. There was no plan to reduce this dose until she had the CT scan results. I thought the 20 mg was unnecessarily high so after 2 weeks on 10 mg and feeling much improved I started to slowly reduce again. When I had the CT scan and another blood test in mid April by inflammatory markers were in the normal range again. I then had a letter telling me to reduce to 17.5 mg (She did not know at this stage that I was on 9 mg!). Today I had another face to face meeting when I told her what I had done and that I was currently on 8 mg. She went on at some length about the repeated flares and the need to get the steroids down and has started to say that perhaps the leflunomide should be replaced with Tocilizumab. I am to stay on 8 mg for 2 weeks, have another blood test and she will then review the result.
My question is should I try yet another steroid sparing agent. Will there be a benefit in swapping leflunomide for Tocilizumab? Any advice very welcome.
A discussion with the rheumatologist indicated that she was not a fan of Health unlocked and that I should follow her instructions to the letter!