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Hi Folks!
I've had GCA for three years. Last August I had a huge flare up with double vision. I was given MTX. I got down to 3mg Pred...then it went a bit wrong. Double vision has crept back but not as bad as before. I've been told they are going to change MTX for something else. Has anyone been in the same position and, if so, what were they given and did it work please?
Many thanks xx
Actemra (Tocilizumab)? People are often put on this biologic for stubborn GCA and in the UK it has to be proven to be which yours looks like it wants to be. It goes for a particular inflammatory mediator called Interleukin-6. It’s very expensive which is why it’s harder to get and not prescribed routinely at the start.
Thanks for that Snazzy!
I imagine and hope they mean to try Tocilizumab ( Actemra)that is a Biologic drug that has been effective for GCA in a proportion of patients. Did they increase your Pred during the flare though? I thought that this was the safest thing to do until your vision returned to normal.
When I got PMR symptoms they did increase the pred by 1mg but then GCA jumped in so they've up the Pred to 60mg (again, this is the second major flare up I've had) and will now change the steroid sparer but to what, I shall have to wait and see. Many thanks for taking the time to reply Sheffield Jane x
Tocilizumab worked well for me, but it is limited to 52 weeks' treatment in the UK, so that needs to be discussed with your prescriber. By the time my 'ration' ran out, I had reached zero pred. My Rheumatologist then started me on MTX, which didn't seem to do much for me and the inflammation built up again after 6 months - so back on pred for the last 7 months and now tapering to 3.5mg.
All the best, PP.
Wow Rugger, I didn't know that they allowed people with PMR to have TCZ! I thought it was for GCA only. OK, then I might have a chance. It's such a shame that your symptoms have returned. I know that PMR is more difficult to overcome but, slow though it is, at least you're on your way. Good luck and thanks x
TCZ is for GCA only in UK -and then it’s not easy to get.
But Rugger is in the UK according to her profile.
Yes I know she is, if you read her full profile you’ll see she did start with PMR but it then later developed -
“A PET-CT scan showed GCA-LVV, with aortitis and other large vessels involved.”
..that’s why TCZ was prescribed-not for the original PMR
Yep, you're right, I've been skim reading as I have double vision in one eye. TCZ is being put forward for me which is a relief.
Good news about TCZ - hope it helps...
I've been away from my computer and DL has clarified things. Yes, I started with PMR in 2016 and then developed symptoms of GCA-LVV in 2019, but my Rheumatologist thinks I've probably had GCA from the beginning. The relapses / flares are what made me eligible for TCZ.
If your GCA is relapsing you do have grounds for tocilizumab/Actemra even in the UK. But it will only be for a year at present. It isn't funded for PMR at all.
When your PMR symptoms got worse, your doctor should have suspected the GCA was flaring - they aren't separate illness but PMR can be part of GCA. Increasing the dose by 1mg was never going to achieve anything realistic. You also probably didn'tneed to go back to 60mg, rather less might have been enough but it is a common error made by inesperienced doctors. In GCA, just like PMR, you are looking for the lowest effective dose and they overshot. As soon as that happens, the inflammation builds up again and causes symptoms. A quick clear out and an increase in dose from where the flare occured is usually enough.
Many thanks. I've been to the hospital today and they are going to put me forward for TCZ. According to the leaflet, it will be for one year; according to the junior doctor, it's for as long as I need it as I've experienced 6th nerve palsy three times the diagnosis of which was confirmed by the consultant of the eye department. We shall see. Obviously I've spoken about this with my husband and if I need it for another year then we will fund it ourselves - though we won't be exactly thrilled to do so but, after three years, I've really had enough.
Not sure the junior doctor can overturn NICE's advice, but maybe you'll strike lucky... hope so.
Possibly if the 6th nerve palsy is due to the GCA inflammation they can get it funded as a special case.
That would be good …
Bless you, Dorset Lady, and thank you!
Many thanks for your reply, I shall take those comments onboard.
I have Large Vessel Vasculitis (ie inflammation in some large blood vessels but not the ones to the head) and was able to reduce to 0mg Pred by using Leflunomide. I had to increase my dose to 20mg but have now successfully been on 10 mg for 5 mths. Good luck with whatever you are prescribed.
Smudge, thanks for letting me know how you are coping with your disease. This whole thing is a bit of mystery, isn't it? Good luck.
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