Gca

[JanieBaxter]

I’m back again!!! As posted before I have pmr and living in fear of gca - I even think I’m starting to imagine all the symptoms 😩if I did go on to develop gca my fear is obviously losing my sight I worry that I won’t get treatment quick enough is this something that can happen straight away or would there be time from the warning signs to seek treatment ? I go to bed terrified I’ll lose my sight overnight .Apologies if this sounds stupid but I’m making myself more ill with the worry of gca 😩

[jinasc]

Follow this link and read up the symptoms, which you should have been told by your medics when you were diagnosed with PMR as a warning. The people with PMR who go on to develop GCA is low.

pmr-gca-northeast.org.uk/us... they are under the heading of useful medical information.

You can download and keep them..............then rest easy.

If you get any symptoms and it occurs during the night or weekends, take them with you and off to A&E.

I don't know anyone who has lost vision either totally or partially during the night with out having symptoms either.

[JanieBaxter in reply to jinasc]

My doctor didn’t even mention gca or what to look out for he has given me very little info - I was just happy to have a diagnosis and was trying to take it all in but when back in couple of weeks which will be the 6 week point since diagnosed I will be asking more questions!! I was in and out in 10 minutes told I had pmr and left with prescription for Pred , vitamin c and d and alendronic acid!! Anything else I am finding out for myself 😏x

[Hidden in reply to JanieBaxter]

I am not sure many do mention GCA. Certainly gp nor rheumy told me. I had same worries for a month but stressing gave me mad headaches etc.so you sound normal so far.

But please try and relax as much as possible. Stressing will impact PMR. Talk to Dr about your concerns or see optician and get them to examine eyes and explain why you are doing so.

I no longer think every headache or blurry vision means GCA. Hopefully you can get to just vigilance rather than hypervigilance that impacts on your day to day life. 🌻

[Jamie345 in reply to JanieBaxter]

That happened same as to me, but my first real visit to rheumy was much longer and info given soaringly

[Jamie345 in reply to jinasc]

Relief! Phew !

[SheffieldJane]

Your fears do not sound at all stupid. We all get them from time to time. I certainly do. It seems that you have got yourself into a state where every headache seems sinister. I know that place well too. In addition to your rational fears anxiety appears as a side effect of Prednisalone and probably AA too. It may be that you have a free floating anxiety that is looking for somewhere to fix itself. Ten minutes with your doctor was not really long enough for you to ask questions about your newly diagnosed condition and to learn about what it all means. I would make another doctor’s appointment to talk properly about it.

In the meantime you need to find ways to calm yourself and distract yourself so that you are not fixating on what may happen. I did a course of Mindfulness which I found very useful, there is also gentle yoga that people find helpful too.

It is a comfort to come on to the forum and share your worries. For instance if you have specific symptoms that you are not sure what to do about.

Did you experience relief from your PMR symptoms when you first took Pred?

To me Pred feels like a safety net, dealing with the inflammation. With GCA it would just be more of the same.

Let us know how you are getting on. Never feel that your worries are silly. That is precisely what this forum is for.

[JanieBaxter in reply to SheffieldJane]

Hi yes I started Pred on the Thursday afternoon and by Friday morning pain was gone it was like a miracle pill 🙈 got slightly blurry vision in my right eye and occasional shooting pain in head which had triggered my gca worry but I am a worrier anyway !! This forum is amazing and giving me so much info and reassurance talking to people who are also suffering this illness x

[SheffieldJane in reply to JanieBaxter]

Good Janie.......and breathe. X

[Jamie345 in reply to SheffieldJane]

I felt no relief after a month on 40 pred before that I was on 25mg when all started in the summer, so it's been a long road, I expected to feel better after the first week as my GP said but it did not happen six months down the line and today I was able to rise from bed on my own, I'm so glad I can read the forum as it has lightened my load.

[PMRpro Ambassador in reply to Jamie345]

Have you seen a rheumatologist? Sorry if you have said - but I can't remember everything!

[Jamie345 in reply to PMRpro]

Yes I have he put me on 40mg for four weeks but says the inflammation has not gone down but told me to start going down pred every week by 5, until I reach 20mg, and I'm going for a scan on the 7th January plus new blood already done, don't know results of the blood yet but I go see the rheumy end January so let's hope they can reach a conclusion as think something underlying is causing issues? I have no idea ?

[PMRpro Ambassador in reply to Jamie345]

The ESR/CRP remaining high is often a sign that whatever is causing the symptoms it is unlikely to be PMR/GCA, although it is possible.

I asked because if you didn't get relief at 40mg - the immediate thought should have been that it wasn't PMR/GCA at all and you should have been fast-tracked to a rheumatologist.

[PMRpro Ambassador]

For the vast majority of patients there are fleeting signs for a week or so before.

However, while the PMR level dose of pred would not be enough for complete safety for patients who already have visual symptoms, the local rheumatologist here told me that many doctors feel that 15mg of pred is enough to deal with GCA that hasn't yet got to the stage of causing visual symptoms. So your level of risk is much reduced by already being on pred for the PMR.

[Jamie345]

I have been diagnosed with GCA and I feel exactly the same as you terrified I'll wake up to darkness, I developed cataracts coming on fast and furious, I told rheumy and he said my doctor should send me to eye specialist, my GP says the rheumy must organise it! Phoned my rheumy nurse she said NO! Is my GP responsibility, so I have to wait till after Xmas to sort this out as I'm away from home for the holidays, but it's awful to be up against this as well!

[PMRpro Ambassador]

Have you been to an optician/optometrist? They are easily accessible and in the UK can do almost all the important examinations an eye specialist will do. You should be having regular eye checks when on pred anyway to be sure your eye pressures are OK, if nothing else.

Your GP seems a tad out of touch with NHS rules - referrals are now done from the GP, not sideways by consultants unless there is a very good reason for ongoing joint care.

[Jamie345 in reply to PMRpro]

Im worried about what else this underlining thing! Must be I'm having a scan on the 7th Jan as I've mentioned all my symptoms are GCA/Plm exactly the same but I'm still not well and in pain the patches are a help but what else could it possibly be? Any ideas?

[PMRpro Ambassador in reply to Jamie345]

As Sandy has said - worry wastes energy. The symptoms you experience are the result of some underlying disorder. What we discuss here is just one version - so be grateful that because you aren't responding "typically" for GCA/PMR to pred they are looking further. The fact that pain patches help does reinforce that.

But no-one here is medically qualified - nor have we seen your test results or know the details of what symptoms you have. None of us can hazard a guess as to what it might be. There are various inflammatory arthritides that will cause similar symptoms - but that is just a stab in the dark. One thing that I know can mimic GCA/PMR symptoms is ankylosing spondylitis - I only know that because a friend from the forums was first dx'd with GCA/PMR but eventually a top PMR rheumy had a light-bulb moment when she mentioned her back pain was worst at about 2am, earlier than is usual with PMR.

But even if it is GCA/PMR, many people don't feel well for a very long time. Taking pred is rarely a miraculous path to feeling back to normal. Patience is a commodity that is particularly useful when you have an autoimmune disorder - the average time to diagnosis is long.

I know it is easy to say - but do try to relax and enjoy xmas. You are on the next stage of your journey. That may shed light on the quest.

[Sandy1947]

Worry wastes your energy (good advice I need myself)! Try being grateful you just have PMR! Every day before bed write down one event that you appreciate. Change your mind, change your life!

FYI...Prednisone makes us crazy!

[jinasc]

Headaches, try this:

Spread your fingers through your hair and gently tug. Each hair has a little muscle attached to it at the root, gently tugging relaxes this muscle.

My hairdresser told me this when I was first diagnosed with GCA and it worked for me, I passed it on and it helped others.

I asked him 'how and why' he told me it comes from Shiatsu

Give it a whirl costs nothing.

[Jamie345 in reply to jinasc]

I will def do that

[harrke]

The only thing I would add to the reassuring advice on here is, if you do ever decide to seek medical advice for any symptoms, PLEASE make sure that the GP, or whichever health professional you see, knows that you are being treated for PMR, and that you are worried about the possibility of GCA. Although you'd think the link would be obvious, it isn't always made.

My Father-in-Law did lose his sight after, tragically, being misdiagnosed by the GP as having sinusitis. He developed a bad headache which he'd had for some days and which wouldn't shift, and pain around the eye sockets. Despite already having a previous diagnosis of PMR and having had steroids to treat it, the GP failed to pick it up. I should say he was NOT taking steroids at the time, so I imagine that would have been some protection against GCA, as others have said. He can't remember 3 years on if he'd run out of tablets or if they had been stopped, but if the GP had been able to add 2+2 and had started appropriate treatment immediately, we believe his sight could have been saved. I think NICE guidelines recommend treatment be started if GCA is suspected before a firm diagnosis is made, as time is of the essence.

As it was, the initial misdiagnosis was compounded by a lack of any urgency when my FiL reported a loss of sight in one eye to the surgery the next morning. The receptionist told him he couldn't be seen till later in the day, and being that generation, he waited without complaint! By the time he had waited for another appt. at the GP that afternoon, been referred wrongly to the eye clinic (having to get himself there at the age of 88, instead of being blue lighted to A+E), then finally directed to A+E (where they realised what it was, commenced steroid treatment and admitted him) over 24 hrs after his first GP appt., it was too late to save the sight in the other eye which went the day after, while he was in hospital.

[Jamie345 in reply to harrke]

That is so sad, I feel I have to start pushing for help instead of being oh well there busy or can't help at present etc., in other words look after ourselves as much as possible with the nhs being in such a sorry state as is today.

[SheffieldJane in reply to harrke]

There is a warning to us all to push for attention. A shocking story with a very unhappy outcome. I am so sorry about your father-in-law. This is exactly what we fear. The receptionist truly failed in her duty of care that day. I would be so ashamed, if I were her.

[rbgirl]

I am being treated for PMR 2nd time..it seems less severe..but I keep waiting for the other shoe to drop. I also, am living in fear of GCA--have had a dull throb now/then in my left temple--think I might be imagining it? Could someone chat about symptoms...are they obvious or sneaky?

Thanks

[Purple-Owl]

It's a great help and read this thread. I've had PMR since September and have reduced from 15mg Prednisalone to 10.5mg. I now have occasional slight shoulder and hip aches at this dosage, but nothing extreme. But what causes me worry is that my mother lost her eyesight with GCA, and it may be hereditary. SO. The slightest unusual feeling in my head makes me fear I might be developing GCR! Is it just 'pred head' that causes me to feel slightly dizzy and disorientated from time to time? I have developed tinnitus a faint ringing in my ears. My scalp tingles occasionally. Are these signs that gcr is developing?

[PMRpro Ambassador in reply to Purple-Owl]

I'm afraid that scalp pain/tingling and tinnitus can be signs that arteries in the head are affected.

Strangely, I had the scalp tingles for about 3 or 4 weeks and also jaw pain over a longer period but they both disappeared! I also had tinnitus from the early stages of my PMR symptoms until some time after I was finally put on pred some 5 years later.

There is now thought that some people can have a form of PMR/GCA that involves more arteries where the large vessel component then aborts and the rest of the time is "just" PMR. But there is far more overlap between the 3 forms that many doctors appreciate. Someone posted this link a couple of days ago - but it is probably well worth having a copy (or at the very least the link so they can look it up) to brandish at a doubtful GP or even rheumatologist:

academic.oup.com/rheumatolo...

And at last I have found a reference about untreated PMR being more likely to progress to GCA:

"GCA and PMR commonly overlap. PMR is observed in 40–60% of patients with GCA at diagnosis, and 16–21% of patients with PMR may develop GCA, particularly if left untreated [2]"

which I have quoted in the past and met with some disagreement...

[SheffieldJane in reply to PMRpro]

Thank you for posting this link PMRPro. Claudication is a term I see often and when I look it up it says that it literally means “ to limp”. The references tend to be for the leg. What I am looking for is a definition of what claudication means in relation to the jaw. Is it the difficulty in chewing that we would notice?

Necrosis is another term that confuses me. How would one recognise necrosis of the tongue?

Given the difficulty some of have with the initial PMR diagnosis, it isn’t surprising that GCA feels like the sword of Damocles - waiting to fall.

[PMRpro Ambassador in reply to SheffieldJane]

Claudication is characterised by the problem arising when you are using the part of the body - so in legs, walking, in the jaw chewing/speaking continuously even - which then goes when you stop, only to start again when you resume the activity. It may start as just feeling very tired and uncomfortable, as it progresses it may become real pain and appear much sooner.

If necrosis appears on the tongue I think you would have noticed it sooner as discomfort and swelling and tongue pain. I won't suggest you google images of tongue necrosis - because they are, needless to say, very advanced cases in most of the images and really rather horrible! I know someone who was misdiagnosed as PMR/GCA and it turned out to be ankylosing spondylitis (Sarah got the right answer) and she had tongue problems. Her tongue had dark areas on the underside and the blood vessels were quite knotty - she did post images but it is ages ago and I wouldn't know where to find them.

[SheffieldJane in reply to PMRpro]

That is very clear thank you. I really didn’t want to go on a gruesome google journey tonight.

Happy Christmas! ( PMRPro)

[sondya]

If you have GCA and put on steroids immediately, there is a very good chance your eyesight will be spared. But don't leave it too late. I had visual auras, temporal headaches and jaw claudication which were obvious signs there was lack of blood to those parts. Was put on high dose prednisone immediately and - as I say - my eyesight was not impaired.