I’ve been wanting to ask for advice and support here but I actually don’t know what the question is other than I am feeling let down and unheard by health professionals and, I am sure like many of you, feeling I have to manage this condition my self and that, after three years, I feel I understand less rather than more.
I was first diagnosed with GCA nearly three years ago and been on prednisone through out. I have tapered, increased, tapered a number of times. The past 4-6 months I have felt increasingly unwell. I saw rheumatologist in September who considered a PET scan but then changed his mind- thought might need to double check my aorta I think. Suggested I increase from 1mg to 3 and see how I got on. I didn’t feel any better but stuck it out for 6 weeks. Had a blood test. CRp normal range ESR 37. Phoned specialist nurse. Went up to 5 on 6th Nov. No improvement. Another blood test last week, markers the same. Spoke to specialist nurse, as I already have an appointment to see rheumatologist 7 th January she said wait until I see her staying on 5 mg. I realise m ESR is not that high and has been much higher but symptoms suggest other wise.
My symptoms- generally feel very unwell, shivery like I’m getting flu, pain/ strange feeling in head right forehead/temple, right jaw pain going back to ear which feels like I have ear ache, fatigue. I know, all GCA symptoms. I feel the same as I did 3 years ago.
I think my question is, what should I be asking my rheumatologist in January. I have really tried to get off steroids, I don’t want to be on them, they are brutal on my body and I feel ill! But what do I ask for?
I was to,d a while ago, probably a year, that once under 10 mg it’s not worth going on methotrexate- has anyone else done this? Did it help?
What about the newer drug TZC? ( that might be wrong initials) I’ve heard you need to be on this for two years but nhs will only fund 1!
Any other advice welcome.
I know while having these symptoms I need to be super invigulent of my sight and any concerns will be straight to A&E.
Sorry this is long, tried to keep it brief!
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susieb627
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Hi and welcome. Never apologise for being long - better we have all the info than something totally out of context so we know nothing.
You were diagnosed in the aftermath of Covid - and a lot of people diagnosed in the last few years really do seem to have drawn a lot of short straws,
The first thing that strikes me is that in the space of 3 years you say you "have tapered, increased, tapered a number of times" - you have been made to taper too fast, caused a flare, increased to get it under control again, and that more than once. You need enough pred to manage the inflammation and that over a period of up to 4, 5 years or longer. What was the last dose at whch you felt well? The ESR is not reliable, especially after you have been on pred for a time, symptoms ALWAYS trump blood results. It is very obvious that you are flaring and you need more pred because the underlying autoimmune disorder is still active. You probably will qualify for TCZ but as I will explain, that isn't a magic answer either.
I know this isn't what you want to hear - but a lot of how you feel is probably not the pred but the illness itself. Pred cures nothing, it is a management strategy to keep the inflammation under control until the underlying autoimmune disorder that causes the inflammation burns out and goes into remission. If that is done well, you are likely to feel considerably better but the autoimmune disorder is chugging along in the background and attacking your body making you feel as if you have flu or something like that and there is no cure.
Not even TCZ (tocilizumab) does that, it is a very effective but VERY expensive steroid sparer, but even it doesn't get everyone off pred. It gets half of patients off pred entirely as long as they are on it - but at least half of patients relapse when they stop after the UK allowance of a year. However, the other half need some pred, 8-10mg is common, ongoing. This is because there are at least 3 different underlying mechanisms which create the inflammation and TCZ only works for the main one - if your GCA involves the others, you will still need some pred. And even 2 years may not be long enough. I know people from the USA who have been on TCZ for 3 or 4 years and still can't get off pred. I don't have GCA, I have a very long-lived version of PMR and I live in Italy so I can have TCZ as long as I need it and tolerate it. I'm just coming up to 3 years and still need 7mg pred. With that I am stable and well. But I had been on up to 19mg of pred before that to be able to function.
Pred is your friend - honestly. Used carefully and well it will make a lot of difference. What you need is ENOUGH pred to get your symptoms under control, then you can try with TCZ - but if the disease hasn't burned out by the end of your allocated TCZ, you will be back to pred unless the policy has changed though there is work going on to address that. But no guarantees.
Thank you so much and to DorsetLady. Although this has made me cry it gives me a better understanding of what I am dealing with. I don’t think there has really been any point that I have felt truly well over the three years but did have the added complication of three meningiomas (non cancerous brain tumours) which were surgically removed followed by 30 radiotherapy treatments in 6 weeks but this was over a year ago.
Neither of you mention methotrexate, is that same reason as TCZ- that I could just end up back on pred anyway?
But basically I need to find a dose of preds I feel well on and stay on it for longer. I have no idea where to start with this. I am so anxious of increasing too much - not sleeping, putting on weight and feeling like a zombie all the time. Although I feel terrible and had to give up work I do sleep and have lost all the weight I gained. Physically I do ok so can run again which helps my mental health, it’s the brain fatigue that wipes me out!
When I see rheumatologist she generally asks what dose I think I should be on and reminds me I need to taper and get off them!
Thank you listening. I should have come here sooner!
I didn’t mention it, because I was on neither…TCZ was only authorised for use in UK after my GCA had gone into remission .. and MTX was never suggested…probably because after the initial few months the GP monitored my illness- and it needs to be prescribed by a consultant.
Have to say after my rocky start - long story if you look at my profile -my journey on Pred was relatively easy compared to many - very conservative tapers, no flares, no particular issues with drug [apart from usual hamster face and weight gain].
I only mentioned TCZ and nothing else because it is the drug that is most likely to get you off pred if you have PMR. The DMARDs are all very hit and miss, they might work but it will take 6 months to be able to say they don't.
A recent study in the USA has shown MTX isn't effective as a steroid-sparer - the 3 previous ones they based its use on were very mixed anyway. It took a year to see any difference in accumulated steroid dose, and the follow-up paper at 5 years found there was no difference in the steroid adverse effects so that begs the question as to why expose a patient to a rather unpleasant drug as well as pred since only a small cohort of patients actually get OFF pred altogether - for them it works brilliantly but it is most likely that they don't have PMR at all anyway! LORA (late onset RA) can have a polymyalgic presentation looking identical to PMR and there is absolutely no way of distinguishing between them for a long time, if ever. But maybe MTX works for them. You have to try it to see if it works for you - but you start with pred to get things under control and add MTX, because MTX very rarely works on its own.
Don't be too hard on yourself - brain surgery and r/t take a LONG time to recover from, with or without PMR.
I think at the moment there are 2 questions - one needs a PET-CT to see if there is inflammation and where it is. And the other is what medication will sort this best. I think with pred you have been messing about so much that your body doesn't know where it is, Creeping up the dose as you have done rarely works because you are always playing catch-up - that is why the initial titration is dose from high to low, get things under control and then go down to find where symptoms reappear. But you have to go slowly or you overshoot. You must clear out any accumulated inflammation before you can taper. Any left-over inflammation just builds up - like a dripping tap fills a bucket and then overflows unless enough is scooped out each day to stop it overflowing.
We know pred has unpleasant adverse effects - but very few are worse than the ultimate adverse effects of GCA or LVV (large vessel vasculitis) which are loss of vision or stroke and they do happen if GCA isn't well managed. Weight gain can be helped by cutting carbs drastically - I lost 35lbs while on 10-15mg pred, I'm still overweight but that has been a lifetime fight and I certainly don't look Cushingoid, just cuddly. Others will say the same, Sleep in another matter - you have to learn to roll with it, maybe sleep alone so you don't disturb others when you get up and do other things and sleep when you can, many catnap when they feel able - and worrying about it makes it worse. And the GP can help with occasional medication to break the patterns.
Where do you start? For a start - I think your rheumy was wrong to not do the PET-CT but you do need to do it at as low a dose of pred as possible as it interferes with the result. And then, a dose that manages the symptoms as well as possible. Get them under control and then taper in small steps and not more than every 3 to 4 weeks. Otherwise you overshoot and have no idea where you are. You have set up a dodgy foundation by the upping and downing in the past, Yoyoing the dose means it becomes harder to get things under control, and then harder to taper again and having done that it often makes sorting it out harder and takes longer. It sounds harsh - but in this game there are no short cuts and you can't cheat, PMR and GCA will always find you out and they always win.
Sorry to hear you are struggling so much -and for the read agree with PMRpro.
Having had GCA myself (now long in remission thankfully) I appreciate your worries -but you do need to look on Pred as your friend and as it sounds as your GCA hasn’t been well controlled over the past -it needs to be now. You may be considered for TCZ as yours may be the relapsing type - but as said it’s not always a magic bullet. But worth considering.
You situation sounds a lot like mine except I have now been on pred for 5 years. The only input from the rheumy has been to urge me to reduce reduce reduce and according to my blood tests I am cured. Except that I'm not. They have never asked about symptoms. I too have suffered several flares caused I believe by rushing to reduce. I have felt very ill the past weeks with a painful bulging temples but the hospital says my bloods are fine and have just moved my expected appointment on 3 Jan to 25 Feb. I was at 3 mg but can't live in pain like that and have taken it upon my self to increase to 8 which seems to have helped a bit. It's symptoms that matter in my opinion and I don't want to lose my eye sight. Happy Christmas 🎄
Honestly - THERE IS NO CURE, there isn't for ANY autoimmune disorder. And pred is only doing its job if you have normal markers, which aren't reliable anyway. I've said before - I thought things were improving but over the last few months I have come to the reluctant conclusion it is worse than ever in places.
So sorry you are going through the same. It’s hard work isn’t it! Thank you for responding. I’m going to increase to 7mg and then see what rheumatologist says in January. I’ll probably get told off but can’t stay like this without doing anything. Hope you can enjoy Christmas xx
Very sorry to hear this. I hit the 3 year mark and was 0.25mg pred when big flare and then another in November. Some days I have felt intolerably ill - it is very disheartening. Rheumy thinks my system is reacting to minor viruses. As Pro says, people diagnosed around covid are having it tough. Ok, so my thoughts.
You are still only on 5mg and been on less for ages, so try not to worry so much because these are said to be non-damaging levels (I know that is easy to say!).
It sounds like GCA to me. The small increases you have made are not enough. You may need to up - in 5mgs - until you squash it. If it were me, I would be going to 10mg - stay there at least a fortnight for things to settle - and if that didn't do it - 15. Tiddling about with a couple of mg here or there prolongs the situation.
Don't worry about going up - you will probably be able to come down quite quickly once settled.
If this feels right to you, let your rheumy know it's your preferred strategy.
But how switched on is your rheumy department? Hmm. Are you able to go private? My rheumy goes by symptoms and gives me parameters for increasing in a flare and the subsequent taper. He accepts people across the UK and all but the first appointment are by telephone.
Going private out of area means that relationships with local rheumys can break down. Mine was advising different treatment to my local team so I went with him. You have complicating factors so may not want to do that. If you can go private, is there a local rheumy you rate? If so worth getting an initial appointment and then they can refer you back to the NHS for, eg, a CT scan or TCZ.
On TCZ, since you have got as low as 3.5 already, they may be reluctant to prescribe - but that would be an option for the future. Good luck.
Thank you so much for taking the time to reply. I have not been impressed with my Rhumatologist from the start and have wondered about a 2nd opinion. I don’t think going private is an option for me but did wonder if I could get to see a rheumatologist at a different local hospital. I think I could probably contact PALs to ask this. I wonder which area you are? I live West Sussex
Hope you have a very happy Christmas and thank you again x
PALS is a good idea for info. I think you can ask to be referred to a different hospital for a second opinion but I don't think you can specify a rheumy. Also, sometimes a single team of rheumys cover a number of hospitals in an integrated care board area (which should be your local referral network from primary care). They do in Somerset where I am based. If an area is large enough to support independent hospital trusts there will be different teams.
Rheumatology doctors are so variable in skill and approach! If you knew a local rheumy with a good rep who does private work, that would be a way in because they are often willing to then pick someone up via NHS. I am going to have to do that to potentially access TCZ. You could start a new strand on forum asking for ideas about a good rheumy in your catchment area. Happy Christmas, hope you feel better soon.
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