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!
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Talyfan
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The advantage of tocilizumab is that it definitely does work for GCA whereas there is only anecdotal evidence that MTX and LEF work - for half of patients it gets them entirely off pred, for the other half it gets them to a lower dose. Whether it will get you to zero can only be found out by trying, You are already at a fairly low dose for GCA and the half who don't get off pred altogether have a version of GCA that has mixed mechanisms for creating the inflammation: there are 3, only one of them responds to tocilizumab. If your GCA embodies the other 2, you continue to require pred to manage the inflammation they create until the GCA goes into natural remission. TCZ is also not a cure.
In the UK TCZ is only available for a year, after that you have to stop whether the GCA is burned out or not and they usually start you on MTX in an attempt to keep you off pred. It doesn't always work.
I'm on TCZ, I have been lucky and have no adverse effects I can identify. Others are not so lucky. You can only try it.
Thank you. I shall quiz her a bit more when I next hear from her. I am really grateful for the information on this site which provides me with the information to discuss my condition and not just do as I am told.
As far as following her instructions to the letter you would be at 17.5mgs of pred had you done so. You seem to listen to your body well and your inflammation markers seem to be accurate when you’re flaring, and when you’re not.
My first rheumatologist was unprofessional in many ways and insisted that I do exactly as she instructed, to the point where she accused me of lying and upping my pred dose “without her permission” (despite me flaring due to her tapering plan, increased inflammatory markers from bloodwork ordered by her, and following her recommendation to up my pred dose accordingly). Later, after checking the computerized patient file, she called to apologize, but too little to late.
Through that doctor/patient relationship I learned it was not too much to expect a team approach with my medical professionals. You are an expert in your body/symptoms and (hopefully) they can put their scientific expertise to use generating a good outcome. My GP modelled this wonderfully and I was an active participant in my own care. He is compassionate, a good listener, and intelligent.
You have tried a few steroid sparers and others on here have shared insight about Actemra. You managed to get down to 5mg on Lefl so you know you’ve had success with that medication. Even if you explore Actemra, you have Lefl. to fall back on.
Whatever you decide going forward, it really should be in part YOUR decision informed by a rheumy that wants to work WITH you. Sometimes we must advocate for our health.
Thank you for your supportive comments. Your experience is very similar to mine with the rheumatologist. I am trying to get a good relationship but feel she is struggling with ‘someone who doesn’t do as she is told’. Will keep trying. I wish she was not so dismissive about a forum of fellow sufferers!
I have had my 'ration' of Tocilizumab during the early part of the pandemic. In fact, some of us were 'lucky' to have the 52 weeks extended because the NHS didn't want us going to & fro hospitals to be established on other regimes, at that time.
I felt really well on TCZ, so my type of GCA-LVV must respond well to it. It enabled me to reach zero pred. Since stopping TCZ, I had almost a year on MTX alone, but the inflammation built up, so I'm back on 5mg pred for a while and hoping to start to taper soon.
From my experience, I would say "try it" if you're offered it. I would go back on it tomorrow, if I could! All the best.
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An update on my tocilizumab experience.
Post Leflunomide Update
Can you 'demand' Tocilizumab for GCA?
