Steroids

[Hallelujah2020]

Currently under investigations for temporal arteritis (autoimmune).

Raised ESR and CRP which on testing again had increased slightly from previous test. Neurologist felt best course was to start steroids.

Started on 50mg for ten days and then reduced to 30mg, plan was to then keep reducing down but as soon as I went to 25mg symptoms returned.

I’m now back on 30mg and back to feeling 90% normal again, temporal pain gone, no stabbing pain in ear and scalp burning also gone. Plus the pelvic pain has reduced also.

Neurologist has advised it’s not good to stay on this dose long term obviously so we are going to try reducing to 27.5mg from next week.

He also wants me to have a lot more blood tests (12 in total) testing for autoimmune markers.

Just wish my body would behave, I’ve also got fibromyalgia and it never does anything quite normally.

He did say about having other options to potentially replace steroids but not sure what they are.

Feeling alone really, nobody seems to have heard of TA in all truth.

My mum had temporal arteritis, it's awful.

Do you know why you are under a neurologist and haven't been referred to rheumatology? It's rheumatology who manage TA. Have you had a biopsy or ultrasound of your temporal artery?

Unfortunately the management of TA is basically massive doses of steroids for ages, I'm not surprised your symptoms came back so quickly as compared to my mum, that is a very rapid reduction.

How long have you had fibromylagia for? If not that long then it's entirely possible you have polymyalgia rheumatica (PMR) and not fibro at all. This happened to my mum and she got ignored as having fibro - she never had it, it was all TA and PMR.

My mum eventually went on to methotrexate instead of the steroids but only after a long time.

The only good news about TA and PMR is that they eventually burn themselves out so treatment should only be for 2-3 years, but it is really shit during that time.

I don’t have GCA but another form of vasculitis. The steroid drop seems really quick. It took me 2 years to taper after taking a high dose for longer than 10 days and eventually replacing with Azathioprene. It might be worth giving the vasculitis helpline a call https://www.vasculitis.org.uk/contact or asking on the vasculitis Facebook group. Are you seeing Rheum? You really need a consultant who is familiar with GCA - Vasculitis UK or the forum could help with this.

So under neurologist because at start symptoms seemed to be neurological. GP basically said it’s facial neuralgia and you’ll never know cause so just accept that.

So I decided to see a neurologist privately. He picked up potential of it being TA on first consultation and has CRP & ESR that day.

These levels were raised but ultrasound was normal but he wasn’t prepared to take risk with symptoms I was showing but he also wasn’t 100% convinced and said would really depend if things improved with steroids

I get totally re rheumatologist but he is also currently treating other people with TA and so far he is being thorough, hence doing all these rheumatology bloods.

To get to see a rheumatologist even privately I’d be waiting for six weeks so going to stick with him at least until bloods are done and reviewed.

You should be able to go back to the NHS via a TA rapid access clinic.

I'd be very nervous of a neurologist treating a serious condition that falls completely into someone else's specialty - even if you wanted to stay private your dr should be referring you on to a private rheum.

This - Vasculitis Uk are upto date with specialist consultants for each type of vasculitis inc GCA/TA. You need to see a specialist Rheum with experience of your condition. I know Bristol has a very quick waiting list - a few days so might be the same in your area? Your GP should be able to refer although the Neurologist really should have already done so.

Going to contact GP today to discuss

Not my normal GP and he was pretty useless

Firstly he can’t count and thinks 27mg of Pred means you take 5x5mg and 3x1mg (which equals = 28mg) 🤦‍♀️🤦‍♀️

Three times I said I need more 5mg and yet he’s not sent that strength to pharmacy

He’s said he’s done blood form with all bloods on it but I’ll be taking consultant letter with me to double check as don’t trust that he has

I asked re referral to rheumatologist and he said that unless I have a confirmed diagnosis (normally by biopsy) then sticking with neurologist is fine for now. Wait to see what bloods show.

That’s a very fast steroid reduction - usual practice is to reduce by no more than 10% every few weeks, or sometimes even slower.

You may well also have PMR - at least 50% of GCA/TA patients do - and you mention pelvic discomfort.

You should also probably be referred to a rheumatologist rather than a neurologist - normally your symptoms + raised inflammatory blood markers + rapid response to steroids would be enough for your GP to do this (there is no direct test other than an arterial biopsy for TA/GCA).

Finally, there is a brilliant website full of super-informed fellow sufferers, tapering plans and other support - highly recommended:

healthunlocked.com/pmrgcauk

Thanks for above

I spoke to my GP yesterday who is very interested in the fact all my joint pain in pelvis and hips has gone since starting steroids.

She is going to put in an advice request to rheumatology now but definitely looks like that’s who I’ll be referred to and in fact I’m debating booking to see someone privately.

Going to get all these bloods done first on NHS as would cost too much privately and at least then will have results to show.

I have it - for just over 3 years, currently on 10mg, 5mg, 5mg of hydrocortisone (changed from prednisolone to try to wean me off them) and have polymyalgia rheumatica to go with it. If your symptoms escalate you must get medical attention quickly - TA/GCA can lead to blindness if not treated promptly. They don't need a positive biopsy or scan, I was diagnosed on a points system. The PMR/GCA organisation is very helpful, they have local support groups that meet every few months with speakers who understand the condition, I find those very useful. Please message me if you like - it takes a bit of getting used to!

I have RA and when I was first diagnosed because of the long wait to be seen by a consultant I was put on steroids. They are little magic pills but unfortunately do have a hefty sting in their tail. Once I was on the appropriate medication to control my RA it proved very difficult to get off them and it wasn't until I moved rheumatologist and was given a proper timetable of reduction that I managed it. Once on this schedule it took me three years but I did manage it in the end. Unfortunately it often seems to me that steroids are the default rather than grasping the nettle and putting patients on the appropriate medication for their condition. The only advice I can give is to push to see the right consultant for your condition then push to start the right medication. Once the condition is under control ask for a formal reduction schedule and don't let them just try and get you to reduce straight off it probably won't work. it needs to be a very slow, planned, long term process to be successful. Unfortunately it means a lot of advocating for yourself which is difficult and tiring when you are also dealing with a chronic condition. Good luck.

Tough week, pain been absolutely awful. GP advised increasing steroids from 27mg back to 30mg.

Had loads of bloods yesterday and interestingly ESR has gone from 29 to 2 now. Not sure how relevant that is.

CRP has also gone down.

Anyway I’ve asked to be referred to a rheumatologist privately and have an upcoming appointment.

Absolutely agree with this. I have been on them nearly 4 years and it’s only through shouting and screaming that I’m now tapering down on a ‘sensible’ regime that hopefully won’t cause a flare. They were truly a lifesaver (literally) at the time, but as above poster has said, they really do have a sting in the tail.

I’m sorry that you’ve had such a tough week OP but it looks like the steroids are bringing the inflammation down, but you really do need that appointment with Rheumatology so good that you have that in place. Just to add what a PP has said; get on Healthunlocked under PMR, they’ve got some really informed posters on there regarding PMR, GCA and all things steroids, I’ve certainly learnt an awful lot by being in there.

Thank you

Now back up to 50mg steroids as looks like I was having a flare (or should never have been reduced so fast) I’m seeing rheumatologist Friday and will feel happier for having seen and spoken to her. Want to get her opinion and input.

Got repeat inflammatory marker bloods tomorrow to get an up to date snapshot of those.

Lets hope that the 50mg makes you feel better and I certainly wouldn’t be worrying too much at the moment about the dose of Pred, as it certainly sounds like you need it.

Hope all goes well with your rheumatology appointment and that you get some answers.

GP has said increase to 60mg if the 50mg doesn’t help. I’m in agreement of not being worried about the high dose currently as the headache and associated ear pain is so debilitating currently so just want some relief