I have had GCA for about three and a half years now and it is getting incredibly 'boring' in terms of even wanting to write about it. But for those who may be as FED UP with this intractable disease as I have been lately might think a wee 'blah' here is acceptable. I tried recently here in OZ to see if I might be eligible on our PBS for Actemra - BUT "NO !!" - I am not - my CRP and ESR levels aren't nearly 'high' enough (and they have never been) and my initial diagnosis was 'clinical' - I never had a TA biopsy as I had already been taking Pred for PMR for several weeks before my GCA symptoms manifested. Both these factors alone strike me off the list of 'approved' candidates here. This is all despite the fact I am still back at 18 mg of Pred after a major 'flare' occurring more or less each year since I have had GCA. I managed once to get my Pred dose down to around 10 mg - then all hell broke loose and I was back at high doses again. (Hence being rather 'bored' with this merry-go-round.)
I had managed the condition since the outset with a good GP but recently relented to see a specialist in the hopes of getting Actemra. She suggested I had a PET scan which I did - but it showed no 'vasculitis' which was no surprise - she agreed given my still highish Pred dose and apparently imaging of the brain is not great with CAT scans anyway due to high glucose in that area. It did however show a tiny cyst in my thyroid apparently - nothing to be concerned about - but I am realising all this imaging is creating lots of work for doctors who then feel obliged to check almost any 'imperfection' (in case) no matter ho common they may be in the general population - and TBH I'd rather not know the minutiae of my general deterioration which is inevitable anyway - isn't it !!! ?? Then in a recent dexascan my bones are still in the 'osteopenic' range and not a lot worse since my last one - but I wouldn't want much more.....
One interesting thing is my new specialist (atypically !??) advises strongly against me reducing at much more than half a mg a month of Pred from now on and suggested I try Methotrexate (which I have always avoided) so that (she says) any increasing inflammation on tapering may at least be partially controlled by it down the track. So I gave in (sigh) and have started on that. Nothing unpleasant so far but I am concerned about anymore 'new' side effects of course. Anyway upshot is from Pred so far that I am a few kgs heavier (slightly 'overweight'), I still have a very round face (which shrinks when I get below 12mg) I had cataracts fixed and my HBA1C has stayed fine - so things aren't absolutely terrible. But given that the average duration for this condition is close to 6 years I am wondering just HOW I can limit any more damage and shorten the duration in any way shape or form. The FATIGUE has been the worst thing and is often still awful. Strangely though I actually had 3 or 4 days last week though when I felt COMPLETELY NORMAL - it was sheer 'magic' and I cannot help wondering what 'caused' THAT !!
Anyway sorry for the general 'whinge' - and I do hope you are all doing as well as you possibly can with your internal and external worlds at present - when often BOTH are 'crazy' !!
Best wishes to you all
PS I recently completed this crocheted 'amoeba' rug from scraps of wool in my stash - it just kept growing and growing and ended up having a 'sea-like' quality I think - and I do live near the ocean.
Rimmy
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Rimmy
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Hi Rimmy, sorry about all your troubles, but as you've identified yourself, some good news.
I had a PET CT to diagnose PMR and it was instrumental in allowing me to accept the treatment (steroids) and removing the immediate worry about GCA (I had jaw claudication at the onset of my symptoms). It also allowed me to feel that nothing else sinister was going on which was extremely helpful.
I hope the new treatment will yeald results and allow you get off the merry-go-round of flares.
Thanks very much - pleased you got some helpful 'mileage' from your scan - they can be very useful for some !
Hi, firstly thanks for sharing. Entering week 9 of possibly GCA - gone from 90% certainty, to the clinicians being unsure.
Your reflection on your experience just confirms my belief that we all suffer from a generic group of diseases, but as individual as we all are, we all respond differently. No surprise there for me.
Good luck. I enjoyed your story and I learned an awful lot from it.
I have GCA and am sorry to read about your problems but I just couldn't scroll by without saying how much I love that beautiful crochet rug. The colours are just lovely and I see what you mean about the Sea.
Good Luck, hope you get more days when you feel 'completely normal'.
Yes I realised that about the average PMR 'timeframe' being longer than for GCA but since I have both I am thinking - knowing my luck it will more likely be 'about then' . The specialist is in Perth in WA and I picked her because she sometimes travels to regional cities like mine. I don't think you'd know her but she seems well-informed, and listens very well and is not at all obsessed with unrealistic tapering - as I mentioned au contraire - so I feel OK with her which is a big relief. Whether Methotrexate helps me will be a long story in itself I guess.
It is - as I said to my rheumy on Friday, it is the potential adverse effects of any of them that terrify me, I have to be able to function without assistance. mtx just made me feel awful. Leflunomide seems to have a lot of gut effects which I don't find in the least appealing! I know where I am with pred!
Spoiler alert.... my comments add nothing useful to the discussion, so feel free to skip read, if you wish.
your amoeba creation is beautiful. I have none to add to your GCA situation, except to say I have been pinging along with PMR since Sept 2013, and I, also, am getting bored with the whole thing. Like maybe this isn't term limited, but lifetime disorder, so put on my big girl panties and get on with it....🤬😱💃💃💃...urrrrrg
Thanks for the update and sharing with us your journey thus far. 2.5 years on with PMR finds me wary at times with lack of progress/flares surrounding my tapering regime. I know, many on here have had an auto immune condition longer, however we all deserve space and time to vent about what is weighing on us.
Hope you find a way to try Actemra if you feel it would be helpful. Good luck with Methotrexate and potential related side effects. In the end you are at least trying ways in which to better manage your condition. Perhaps your new Dr. will open some new doors to healing. Take good care.
Thanks SJ - no I am not 'allowed' Actemra - I don't fit the PBS 'criteria' as I mentioned in my post so now trying methotrexate as a 'sparer' and last resort to try to taper without the inflammation reappearing at even moderate Pred doses.
Sorry, it’s me. In the U.K. Methotrexate is one of the steps towards being authorised for Actemra ie it shouldn’t be the first drug they’ve tried after Pred. I hope it works for you. I am not sure about Tocilizumab for me, I feel pretty rotten.
Hi again SJ - that's interesting re Methotrexate in the UK - I'm not sure that's in the criteria here but could be - either way I still wouldn't 'fit' - mainly crosses and not many 'ticks'. They aren't flexible either - not doctors eyeing off the applications - I've been told more like medical 'bureaucrats'. Sorry you don't sound as if it is doing you much good at present - but if you soldier on maybe things will start to change - isn't that what's MEANT to happen !? I must be a perennial optimist though cos some wee part of me says we WILL get to the end of this bl**dy 'tunnel'-one way or another !XX
From my perspective the most difficult part of having GCA is not dealing with the disease itself, or even the side effects of pred, which thankfully don't bother me on a day to day basis, although there have of course been bumps along the road. But it is the mental aspect of fearing you are in the hands of medics who neither know nor care, and in your case having to accept the stubbornly bureaucratic decision that you don't qualify for actemra when clearly you should. I totally get your frustration. But you are also right in saying that one day the disease will burn itself out. You have pointed out there have been positives for you, and those days when you feel normal are to be appreciated. Methotrexate may not work for everyone, but it must work for some, and could for you, so stay positive. Keep us posted about how things go for you.
I've recently been approved for actemra, after difficulty in reducing pred after a flare. I'd been gearing up to beg for it, but my rheumy offered it during a phone consultation. I've been on no other pred sparing drug, so perhaps the rules here in the UK are loosening? I should say that during a previous FTF consultation I did say I would be reluctant to try methotrexate, so perhaps that had a bearing on her decision.
I did ask her if it had to be formally approved, and she said no. She even reiterated this in a follow up letter to my GP, copied to me. So we shall see.
My rheumy (a consultant) believes my GCA is refractory. My GP bless her also wrote her a letter with a full and accurate account of my struggles and her worries for me. I also provided her with a detailed spreadsheet (downloaded from here) of my daily pred dosage for the past two years since being diagnosed, which has impressed her greatly. I've been sent the bumpf about tocilizumab through the post and have a phone appointment next week with the hospital about it. Your doubts may be well founded as I was frankly surprised at being offered it considering what I had read on this forum. I wonder to what extent the rheumy is the gate keeper in all this, and whether they set their own criteria (not all of which may be required by NICE for GCA) before applying for the drug? If I get it now I will be so grateful, and if I don't I may well get it in the near future. Best to stay positive.
Good morning, being newish to these problems and only with PMR, at the moment, I can't really add any comment to the medical side but I do find it useful and interedting to read other people's experiences and ways of coping with their/our problems. As the others I love the rug.
I'm sorry to read that you're up against the bureaucrats re Actemra. I started it just before lockdown, for GCA-LVV which appeared after 4 years of 'relapsing PMR'. I had a PET-CT scan which did show vasculitis in my aorta and its branches.
I hope the Methotrexate is helpful with your pred reduction. Could it be the MTX that made you feel "normal"?!
Your crocheting is beautiful! My rugs are braided or prodded. I've tried to crochet with little success and prefer knitting.
Hi Rugger - I also prefer knitting and this is about the only large item I have ever crocheted. I am in fact trying at present to upgrade and diversify my knitting skills - I learned as a child to do English flat style knitting so now many decades later I am having a go at in-the-round and some 'top down' and Fair Isles patterns. Re the GCA - unfortunately (or possibly the opposite) the few good days I had in a row last week preceded my first dose of Methotrexate - so who knows WHAT will happen next !? Time will tell ....
that patients with RA are subject to this condition, but it is not required for those with GCA. It is perhaps the case that some rheumies just assume the condition applies to everyone. I do hope I get it, as I have read about such positive outcomes, such as yours. My rheumy knows I am drug averse and have researched the heck out of every drug I have been prescribed with GCA - and refused some - so she probably knows there is no point in offering methotrexate.
I'm not surprised the private health company denied you Actemra. Anyone wherever they are must be mindful that with private health insurance the insurance conpany's priority is always to cut costs. Thankfully we both have access to a national healthcare system with different priorities. Cost effectiveness is still an issue, but not the sole one.
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