A week or so ago I realised I was having a flare when my nice expensive new glasses with the prism divided between the lenses didn't do the trick as I was coming back from a visit to my mother - did most of the hundred mile drive with one hand on the wheel and the other covering an (any) eye. Sure enough, marker had gone up in a week from 5 to 35, so I was whisked in to my hospital and advised to go back to 60mgs. I'd just got to 2mgs, which I'd been on for a month, after a 3 and a half year period. Because the consultant said "probably" 60mgs would be better than 40mgs, I wrangled him down to 40mgs - but his proposal for reduction is swift : 20 mg in two weeks, then 10 for two weeks... scares me, I've been coming down half a mg every 6 weeks for months, nay years.
Why I'm boring you with this is that he said he's going to put in for another Tocilizumab funding - I pointed out that I've had a year, ending last August, and had been told categorically that I wasn't allowed any more. However, he thinks we have a case, because new research shows that 50% of patients relapse within a year of ending TCZ. So I appear to be another typical statistic.
I'll let you know.
Karen x
PS. as if that wasn't enough, I've just developed Plantar Fasciitis... I expect many are familiar with this? Absolutely instantaneous onset, no fall, accident, damage ... but painful to walk, pain coming from a heel. Came on as quick as a sneeze. Insult to injury, I call it!
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Frewen1
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I hope you are successful in getting more funding for Tocilizumab. I really wouldn’t wrangle my doctor down from his suggested dose for a GCA flare, there really is no way back if it goes wrong. Your symptoms sound terrifying. How ever much we cherish a good steady taper with the end in sight, it does not compare to preserving our vision. In short I would follow the guidance which seeks to knock out this flare robustly and do minimum damage with a large Pred dose. I would seek separate advice for the Plantar Fasciitis. I get it from time to time. Supportive footwear and rest seem to help me the most. Good luck.
I know that's good advice, but I'm hanging on until my next blood test and checkup next week - I've promised if my eyes deteriorate in the meantime, with the new prism on my specs' lens, I'll go straight back to 60mgs. Thanks for reply x
Rheumy's suggested taper is much in line with taper we suggest for a flare - albeit it a lot bigger increase [maybe he wasn't sure all eye issues were glasses related rather than GCA as such] and longer to get back to current dose.
The reductions from 40mg down to 10mg should be okay, but what's the proposal from then? Down to 5mg?
Unfortunately you have to try it to see how it goes.... and hope you can get TCZ for another 12 months.
They have been working hard on that to try and get NICE to change the ridiculous limit of a year - it is blatantly obvious it isn't enough. They can only ask - and they can only say no.
Bad luck - after all that careful reducing! But thanks for telling us about the TCZ research. That sounds a little bit hopeful for the people here who are nonsensically chucked off TCZ, only to have to go back to higher doses of pred again.
Indeed. I'll let you know what happens... certainly my regular consultant, whom I like very much, wouldn't have suggested trying for this - but I saw a different consultant as it was an emergency appointment, and it was his suggestion. We'll see!
Sorry to hear about your flare. Just a small tip that might help about the plantar fascitis...They look goofy, but try a pair of Crocs. I work on my feet, much of the time on a basement floor and they basically fixed the problem for me.
For your plantar fasciitis I recommend ordering a Straussberg sock online (the usual source). I had two at the same time and wore these annoying socks at night and it worked. Nothing else did for me. The sock keeps your foot L shaped at night and not toes drooping (if that makes sense). Good luck with everything.
I wonder if I can ask you more about your double vision and how it presented at the onset? My story is that I have Graves’ disease and thyroid eye diseaseTED . I was diagnosed with PMR a year ago and I am taking 7 mg Prednisolone at the moment.
I have been seeing an ophthalmologist for 3 or more years for the TED but at the moment he tells me TED is in remission . However my main symptom / problem still is double vision . It has occurred to me that the double vision is nothing to do with the TED but is connected with PMR . I just looked back through my PMR diary I had kept for this past year and in the early days I kept mentioning my eyes.
My double vision is causing me a lot of distress , the ophthalmologist doesn’t have very good patient skills and is almost impossible to speak to.
However since the PMR developed he has been asking all the right question to check for GCA and he sees me every 6 weeks to two months. The optometrist did check but didn’t think Prisms would help me , like you I have to shut one eye to look at a screen or read.
I can understand the eye involvement with GCA but wondered about with PMR?
Just wondered if there were others with PMR who have double vision?
Just to reply to you… in August 2020 I was being given daily intravenous antibiotics to squash whatever it was that had my protein markers at 150, but they didn’t know why. On the 5th day as I walked out of the hospital, suddenly I was seeing everyone double. (Apparently 6th nerve palsy). I mentioned this the next day, and was immediately taken to ophthalmology, then a pet scan finally diagnosed GCA. A couple of times the double vision has come back, often in cinema or theatre, and for a year or so have had a prism put over the lens of “bad” eye where the inflammation is. After a period of stability I had new glasses incorporating the correct strength of prism, only a month ago…. And now the flare, so back, to square one with a stronger plastic one stuck over the lens again. That’s the history! Good luck to you
Sorry you've had to go up. How frustrating and disappointing. Perhaps you should query whether it would be better to have a pause at ten and see how things are going.
Just a thought - are you sure your glasses are suitable - those prism varifocal ones aren't suitable for everyone. My optician agreed with me that I wouldn't get away with them. (Have three different sets of glasses.)
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