Hello. I have ust been diagnosed with GCA three days ago on 21 Feb 2018. I'm 58 and male. Usually in good health.
My apologies if this is a bit long and nerdy: I'm just finding it useful to write all down somewhere.
My symptoms started on Christmas Day with very sensitive scalp and shooting pains in jaw and neck.
I'd recently had blood tests related to hypothyroidism so when I saw the doctor on 8 January these tests were repeated but he didn't pick up on the symptoms I'd described although he listened to my chest and commented that my aorta didn't sound quite normal.
Ever since Christmas I'd also been having muscle pain and stiffness like I'd never known before, lack of energy and depression.
I felt like I'd aged thirty years over night and couldn't do basic things like put on my pants and socks, or even bend my neck far enough to see if those pants were on the right way. there were several days I just didn't make it out of bed. Oh, and the night sweats!!! I once woke up in the morning to a pile of 8 soaking wet T shirts and pyjama bottoms!
This became the new normal. The doctor considered sending me to a rheumatologist but wanted to eliminate other possibilities first, with CT scan and x ray. She didn't put me on steroids in case these masked symptoms which actually indicated other illnesses, I guess things like lymphoma.
Friends soon started saying they had older relatives with similar symptoms which had been identified as PMR and that they'd had Prednisone for long periods. I was pretty averse to the idea of long term steroid use and was happy to go along with the doctor's softly softly approach
Blood tests on 16 January included a bone profile and showed slightly low serum albumen and plasma viscosity of 2.16. and doctor ordered more tests on 23 January, 29 January and 12 February
These showed high but falling levels of
CReactiveProten: 64, 36 and 25 and
Plasma viscosity of 2.1 1.88
By then I'd also had the chest x-ray and CT results both clear although (I now regret) I'd asked for the CT scan to be without contrast. This seemed to signal that whatever I'd had was getting better and the next blood test will be next Friday 2 March.
But on Tuesday 20 Feb I had strange visual sensations, only in bright light and when outdoors, like I'd picked up the wrong spectacles. Not exactly double vision but I think that that's because one is so dominant that my brain was able to force the images together but it was hard work.
I'd also had difficulty opening my jaw fully to eat an admittedly humungous cup cake (left over from my birthday!) and had noticed that the sound of blood pulsing in my ears was much louder than normal so, even though I didn't have the scalp sensitivity I called the doctor, a different one this time due to rostering I suppose.
She had me go the to Bristol Eye Hospital within the hour and they diagnosed GCA by the late afternoon and had me on a 1g Prednisone by IV by 7.00pm.
I have to say they were brilliant. So quick and thorough.
Had me back the next day for a temporal ultrasound. The technician was a research scientist who told me, slightly wistfully, that because he generally gets to see people who, like me, have already started Prednisone he's only ever had two positive ultrasound results. I made his day by becoming his third.
Three days of 1g by IV later and I have a big bag of Prednisone tablets, various reduction charts to follow, stomach protection, calcium pills, an appointment with a neurologist and a date for a temporal biopsy which I'm going to challenge because, having had the positive on the ultrasound, the registrar admitted was pretty redundant: by the time it happens I'll have been on Prednisone for 9 days and if it comes up negative they'll ignore it and carry on regardless.
The results have been spectacular for the PMR: woke up the first morning and almost all my pain had gone. I could get dressed, walk the dog, ride my bike. It was amazing. Vision still funny occasionally but the wooshing in my ears had stopped. Whatever lies ahead with coming off the steroids, I'm enjoying the upside for now.
However, I'm sitting up writing this at 03.59 partly because my IV was late in the afternoon and I can't sleep but mostly because I farted, as one does.
Nothing unusual (I was going to say 'nothing to see there, move along people' but that would clearly be inappropriate ) but I did also feel an unfamiliar discomfort behind my sternum and made the connection with my aorta sounding odd and references to the risk of aortic aneurysm that I'd read and glossed over in my research into GCA.
So now I'm wondering whether to get back to the hospital to ask. It's the middle of the night, it's a weekend, A&E will be chockablock. It's cosy in bed and The Beast from the East is about to strike.
That's it for now. Ironically, the next meeting of my local PMRGCA support group clashes with my neurology appointment which they can't change. I'd have liked to meet people with more experience of what I'm just starting to learn about.
Ben
36 on 29 January and 25 ..
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Brizzleben
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Hello and welcome. I am 55 and this was me last March. No IV’s but started on 60mg in A&E. I didn’t get the stiffness but my life just stopped overnight due to Pred side effects and a lag in presentation. I’m pretty sure I had had larger vessel symptoms but I had been on Pred for a few weeks before so my PET scan was negative. Nothing has happened since on that one, but I have been asymptotic from about 3 weeks in.
There is so much knowledge here and plenty of “nerds”, so if you want to go into an overdrive of research you can use this resource. However, please REST and accept you are very poorly, go with the flow and allow the Pred to suppress the inflammation so no further damage occurs. This is a long game, not one to ‘beat’ and tough it out like a brave solider. You may find yourself wondering if various symptoms are Pred or It as time goes on and the side effects stack up. On larger doses it can be pretty rough with features including sleeplessness, being a bit manic and hunger, but it will end. Just about everyone will tell you not to be too impatient with reducing; you do not want to be going back up because your inflammation has come back because you’re not ready. Depending on your Rheumy, your personal tolerance to reductions may be at odds with what they want on paper. I found the steps I was expected to take were way too large and I couldn’t live with the withdrawal, even at higher doses. I just made my steps smaller. Withdrawal tends to start at 1-4 days and last for a few days and feel like the same symptoms (minus eyes). Relapse is generally at 1-2 weeks as the inflammation has to build up, but in the early days when there is a fair bit sloshing about it can be quicker. Anyway, it does settle and you feel less like you’re guessing as you become familiar with your body on Pred and you fret less.
One last thing, unless there is some other medical reason not to, a no/low carbohydrate diet will stop weight gain and help prevent diabetes. Also, you can stuff your face with food to calm the hunger beast without it being detrimental, if it is veg and protein.
Would agree that if GCA already diagnosed then TAB is unnecessary, as you’ve said. It’s another procedure that you don’t really need. My GCA was diagnosed by Ophthamologist in A&E who requested TAB (as protocol demands) but then decided that as I’d already started Pred, lost sight in right eye, and it would take another fortnight for it to be actioned, cancelled it!
Sorry can’t comment on your aorta discomfort, my GCA was purely head related, other than to say that if you are worried then you need to seek advice despite the weekend and the Beast from the East.
Have a glance through attached, it may give you some light reading to while away the sleepless nights while on large doses of Pred
Ben, welcome to the club nobody wants to join. Our circumstances are very different so I’ve no advice for you apart from saying that some of the people on this board really do know their stuff, and will help in explaining so much that busy medicos, with the best will in the world, don’t have time to detail.
Hello and welcome to the club no one volunteered to join. I also have both PMR and GCA. I absolutely agree with all that SnazzyD says but must emphasise the rest bit, you have a serious systematic disease, rush around like the Duracell bunny one day do the dying swan thing next day. Pace yourself and get plenty of rest. Watching the garden grow is a valid hobby! If you are still worried about your aorta do get it checked out, worrying never made anything better. All good wishes. 🙂
Hi Ben, Welcome! Well, you've been through hell in the last several day's, haven't you?
I am, however, impressed with what they have managed to accomplish over just a few days... many people wait weeks/months to get half that done!!!
I have both PMR & GCA and it (the GCA bit) hit me like a ton of bricks! In a few hours it transformed my otherwise active, interesting, fulfilling life into a NIGHTMARE! It's been 103 days since my diagnoses (...but who's counting!) and my journey has been littered with ups and downs.
On the bright side... I have discovered a creative side of me that I never knew I had! And because of the massive amounts of steroids I'm taking, my wrinkles have faded.. so there has been a bit of a silver lining!
Every journey is unique and I look forward to forward to hearing more about yours and will keep my fingers crossed that it is smooth and relatively straightforward.
All the best, Melissa
Hi Ben,
I have a thoracic aortic aneurysm, it shows on CT scan even without contrast, all the contrast does is show inflamation.
Mine doesn’t give me any discomfort at all, it needs to be large to do that. If you are having chest discomfort then you really need to go to A&E to get it checked. Patients with auto immune Rheumatic disease have a higher risk of cardio vascular events but it can also be as simple as indigestion or inflamation in the in the rib cage itself.
I had an episode of chest pain last year which turned out to be pericarditis ( inflamation of the heart lining ) which also more common.
Dr Jo Robson is an academic Rheumatologist in Bristol who has a special interest in PMR/GCA, I would recommend her.
Thank you SnazzyD, Dorset Lady, Mai45, CT5012, Mamici1 and Keyes. I really appreciate the time you taken so respond, share experience and offer support. For a club that no one wants to be in, it has some lovely members.
What's striking is how widely the PMRGCA experience varies from one person to the next.
Resting isn't coming naturally after 8 weeks of being unable to do very much, but I'll try to pace myself SnazzyD.
Thank you for confirming my feelings about the TAB, Dorset Lady
I'm going to pop down to A&E before this morning and hope I time it right.
I'll use my time to work up some creative pop up card ideas I've been mulling over, Mamici1.
Interesting to hear your experience, Keyes. This morning I had a date for an ultrasound scan - 18 March. They're certainly quick off the mark in Bristol.
I'm not a medic - but I think the likelihood of aortic aneurysm is small since you have had a CT. Even without contrast it would have shown an aneurysm if one had already developed. The risk of AA tends to be over a long time, they take time to grow and even if one is noted it is merely monitored up to a given diameter.
Not a lot to add to what the others have already said. But I would ask about the reasoning behind a TAB given the u/s is accepted as equivalent.
Thank you PMRpro, that’s reassuring. As I’m halfway down to A&E I’ll get myself checked out anyway just so I have one less thing going round my head in the small hours
Hi Brizzleben - if you have any aortic aneurysms keep a close eye on them with regular scans. GCA will weaken the aorta walls and potentially cause an increase in aneurysm growth rate - and that will mean surgery if they reach 5.5cm. With your sight, GCA causes bright jagged flashes in your peripheral vision indicating reduced blood flow to the optic nerve. Any sign of that go straight to A&E to avoid permanent blindness. Also keep an eye on numbness in your toes or fingers - reduced blood flow again causes nerve damage in arms and legs. These are probably the most serious areas to monitor closely and get treatment for.
The visual symptoms vary - there may not be bright flashes, it may just be blurriness or a spreading shadow like a curtain. Or other things.
The bottom line is: ANYTHING strange in your visual field, get it checked asap. Don't wait for it to worsen or for what other people have said it was for them.
Pretty much my story too except I live in France and therefore follow their way of handling things. What was great with the French system is I was also given a dietician and a strict regime to follow. Took some getting used to but now enjoy the benefits of eating properly. Gave me a certain feeling of control as well. Can also highly recommend the book written by Kate Gilbert 'PMR & GCA- a survival guide'.(to order on Amazon). Brilliant overview of this condition, very informative in every way.
Big thanks, by the way, to all those contributing to this site. Gratitude for all the experiences, encouragements and information that keep me from being daunted.
Hi FRina, my copy of the survival guide is already in the post so it’s good to have an endorsement, thank you.
It seems like we could learn from the French approach here where there’s more emphasis on diagnosis and treatment than adapting what we do to avoid getting ill.
Does the book cover what you’ve learned from your dietician?
No, the book does not cover diet. But I did also order an American cookbook 'The Anti-Inflammatory Diet & Action Plan' after 9 months of following the French dietician's regime (basically no salt, no sugar i.e nearly no package foods) just to get a bit more inspiration for preparing dishes. There are many health cookbooks out there - take your pick! I don't think it matters too much what you choose.
An old favourite book I can also recommend is one I read BEFORE I got PMR and GCA so it's about general health rather than our specific condition. It is called 'Healing without Freud or Prozac' by Dr, David Servan-Schreiber. I am re-reading it right now to remind myself I can do the best I can for my own health, i.e. not to only passively rely on doctors and specialists (although I am tremendously happy with the French doctors and the modern medicines they prescribe).
How enlightened of the French to prescribe diet and nutrition. I'd be really interested to hear details of your dietary regime. Trying to eat healthily myself (low carb because of the steroids, lots of fresh veg & whole foods, good fats etc). But wondering about the role of gluten and dairy in autoimmune diseases - can't quite bring myself to eliminate those!
I gave the dietician's advice my best shot: I've not gained any weight (am 58.5kilos) and have no pain (as yet i.e. I'm down to 10mg prednisone so have to wait and see how the tapering of dose goes). Have plenty of energy.
This is a tiny summary to give you the gist. (actually they gave me a whole booklet with example meals and preparation methods and all sorts of advice- the French take their food very seriously)
I was given a long list of 'good foods' and 'foods to avoid'. Good dairy= no sugar or salt added. Bad dairy= salty cheeses, sugary yoghurts etc.
Only fresh organic meat and fish (for protein). No pre-prepared, salted, smoked meat/fish.
Fresh veg. fresh fruit. Grains and nuts.
Bread without salt (make my own salt-free sourdough)
Fats: olive oil, salt-free butter
They recommended 3 meals a day, no snacking. Weigh once a week at same time.
So basically it's no sugar, no salt. Avoid package foods or at least read what's in them before buying.
This is a basic diet: they said yes to going to a restaurant for a special occasion. Or an occasional slice of cake. I sneak in a square of 80% chocolate quite often.
My breakfast: 1 slice of toast with butter, 1 cup of coffee, small bowl of fresh fruit and muesli topped with cream cheese.
Dinner: as lunch but with meat, fish or eggs. That is to say: veg for one meal a day, starches for one meal a day(never together).
Yes, in the beginning I was HUNGRY. But more or less stuck to it and now don't have hunger pangs. And that's from someone who's had a sweet tooth all her life.
Very interesting, thanks for such a detailed reply. The only thing I don't fully understand is what is meant by starchy foods in this context, and why they can't be combined with vegetables (I thought many vegetables themselves were starchy, eg root veg).
What is called 'feculants' in French: potatoes, rice, pasta, polenta, quinoa etc as well as lentils, flagelots, white beans, chick peas etc (but not advised are frozen (packet) chips, instant mash potato, ready-cooked potato, pasta and rice dishes, tinned peas etc)
I think not combining the above with vegetables is merely a method for not eating too much: i.e a strategy for controlling intake. And of course sometimes I do combine them but not as a general rule.
I see FRina, that makes more sense then. I've just been looking at Dr Servan-Shreiber's book on Amazon and thinking of ordering it. Best of luck with the tapering - wishing you a smooth journey down.
I take it with a name like that you must be from Brizzle or live there.
Like you I'm only 58 have had a up and down journey and dragged through the mill with this horrible illness and find it very difficult in the line of work I do, I love being capable of doing most things around my home diy etc and have always kept myself fairly fit having played rugby at semi pro level and competing in triathlon but due to this pmr I get so tired fatigued and have to take time out to recover.
I started a bathroom renovation but I'm now having to get someone in to complete the job because it will never get finished.
Like yourself brizzleben I have a very physical job of work with in the security industry looking after the security of a top university and looking after certain vip's that work for said university.
I also like to be up and about doing things walking the dog , doing my garden and diy round the house not to mention the work i do for my sister who lives in kingswood brizzle.
So like you have been very down and not so able but I find it very hard to accept but hey life go's on and will keep pushing the limits and manage what is possible 😕
Hi - Just to say I was diagnosed by the BRI twenty months ago for GCA, having gone to A&E as my doctors didn't know what was wrong with me - they likewise diagnosed it within a few hours and put me onto 60mg of pred. Been a bit of a rollercoaster ride since then, mainly from the side effects of steroids - however now on 9mg and feel I'm through the worst. Well worth researching all about this condition so you understand what's going on and why you feel the way you do. There is a new group which has started in Bristol for people who have GCA and PMR which is very helpful and at some meetings have v, good professional speakers. Also the help-line at the BRI Rheumatology Department is great- problem is that very few doctors have much experience with GCA and the reducing of high doses of steroids which need to be handled very carefully - there is a protocol for reducing, but it doesn't necessarily suit everyone, sometimes the reductions are too big and you can feel terrible (not necessarily though), men seem to have GCA less severely then women - nobody knows why!!
Hi Brizzleben. A roller coaster as others have said and you have caught up swiftly; great that you are on top of things and still have your sight. I was just 57 when I had a week of night sweats, uncontrollable shakes, pain in head and across shoulders etc. Blood test by GP on a Friday indicated just under 200 CRP, Hospital Monday with ample tests over following two weeks with nothing showing and CRP reached just under 400. Eyes okay throughout. Then started Pred. Then the pain in head and shoulders slowed and mostly been okay since. 13months on, I realise that being propped up by steroids is double edged as I thought I was on the mend and heading back to normal. Rest is vital and if you can afford to take time out from work and from pace of life, then please do so. I am pretty sure that the triggers were related to pace of both physical and mental 'life' and when I did return to work, 'looking good' on Pred so colleagues thought I was okay and ready for the hurly-burly again, I had a 'flare'. Others have expressed that Pred reduction is an experiment - this seems right as we are all different! What is more interesting is the comment I have read somewhere that a flare is not a warning but is a symptom too late. I cannot comment on diet, but I do try to eat healthily, and I am having my portion size better controlled now my wife is in charge. I have learned to cook (afraid I have been a typical man for much of my life), enjoying it, need more time and learned that what I had as a child fruit, veg, no 'plastic food' etc all are reminders that mother was right all along. Weight is under control and feeling good on it. Exercise is good too (walking in my case), if only for the opportunity (in this freezing weather) to slow down. I cannot comment on PMR for fortunately that has not been my experience. I do constantly worry about acuity of vision as I get sore eyes, there is a general bleariness, and both optician and ophthalmologist suspect steroid related cataracts - I am now reading up on it! Lots of people with lots of good ideas and some cautionary tales out there which is wonderful: we have to hope that better and full understanding of the 'dragon' can be made - and I think our own tales are informing the bigger picture.
The responses to your post have been excellent and I hope you take some comfort out of the positive stories others have posted.
I was also diagnosed with PMR at the age of 58, I am now 69. I suffered for 6 weeks before being referred for Physio at BUPA. The physio had a feeling I had PMR and she called a Rhumatologist to check me over. He came into the physio room to meet me. The same day I had an MRI, XRay and blood tests. The following day I had a CT scan. Like you, all these scans were to exclude other issues. He started me on 15mg of Prednisolone the same day. By the time I went back after 3 day I was feeling amazing. He confirmed the diagnosis as PMR.
Over the last 11 years I have had several flares. When it happens I have the experience and toolkit to deal with it. It sounds to me that you have a good team of medics behind you. My single piece of advise is “treat the symptoms, not the pathology”. I say that, even though I was a Director of an international Medical and Life Science company for 40 years.
It is not always the case that if you have a flair of PMR, that your CRP and or ESR will be abnormal. It is very common to have normal blood results yet have adverse PMR symptoms. Both my GP and my Consultant are of the same view. In summary, if your symptoms reappear for more than a couple of days, increase your Prednisolone to the previous dose that gave you relief. Adjust your dose accordingly. Stay on this dose for 2-3 weeks before starting to reduce. Reduce very slowly and never more than 10% of the higher dose. Below 10mg, reduce by ½mg at a time. To flair is not some sort of failure and is very common. Talk it through with your GP and get their support. PMR is mostly treated in primary care nowadays but unfortunately not all GPs are best informed. I managed to get my Consultant to speak to the doctors at my practice which has helped with creating awareness. It is the case that many patients are more expert than their GP. Hope this helps.
The opposite is also true - you may have raised ESR/CRP but no symptoms. In that case it should result in a kneejerk increase in the pred dose but the blood values should be monitored to see if there is a trend upwards. All sorts of things will increase the ESR/CRP, not just PMR/GCA.
I can relate to the propped up on steroids thing; I’ve been buzzing since I started but at least have the awareness that this is not sustainable and there will be bumpy times ahead.
And one thing that’s come clear from the forum is how differently we all experience these conditions and have to find what works for ourselves.
I guess the prednisone, while not a cure, gives me my life back so I can make changes.
Hi Brizzleben - welcome. I am over GCA (diagnosed in Dec 2016) but still like to keep in touch. Like DorsetLady, mine kept in my head as well. It's quite a roller-coaster journey but the disorder is manageable, treatable and sometimes curable. I had the jaw claudication and alarming visual auras as well. All that went after I was put on prednisone - about 60mg at the start, reducing very slowly, and will be completely off it in a couple of months.
I am now 62, was diagnosed with PMR at the age of 57. Had pains everywhere after a week or so, could hardly get out of bed, dress etc, so know the feeling! Was fit and active before then. Managed to get by with the pred, which I was on for just over 2 years. Came off it, but after a very stressful set of events in 2015 had a relapse, the pains came back quite bad, and back on the Pred for around 6 months that time.
Felt fine without the Pred for most of 2017 until October, when I noticed a shadow in my left eye vision (Sunday) Unfortunately because I had none of the usual GCA symptoms at all, I did not relate it to GCA. I saw an optician 3 days after I noticed the shadow (Weds), referred to the eye clinic at the hospital, but not told to go there straight away by the optician, even when a scan at the opticians showed something was wrong. Had a voicemail message from the hospital on the Thursday, which I noticed and listened to on the Thursday night, and at the eye clinic on the Friday (early afternoon).
I told the eye doctors there about the shadow in my vision, and that I had PMR. They looked into my eyes and saw inflammation in my left eye optic nerves. I had a blood test, of which the results were not back by close of play that afternoon, so given prescription for oral Pred (60 mgs) that I took that evening (6.45pm). I could still read on that Friday night. I was told to come back to the eye clinic the next morning (Saturday). I was there for when it opened around 9am, but by that time when my eyes were tested, the cloud (shadow) had moved down into my central vision. I ended up losing the central vision in my left eye.
As you already know, there are a lot of very helpful and knowledgeable people on this site. The question is why I was not put on an I V steroid drip straight away on the Friday night, when it was known that my sight was in danger. I was just told by an eye doctor that they had decided not to put me on an I V drip, with no follow-up explanation - I did not know what was going on at the time, and am now a lot more "genned" up on things through research and from all the knowledge I have been gratefully given by people on this site.
I have a meeting coming up with a senior eye consultant at the hospital, in which I need to know answers. I am not saying that an I V drip would have saved the sight in my left eye, but from my research, and information I have been given by other site members, it certainly sounds like I would have had a much better chance of it being saved if I had been put on the I V steroid drip - I will never know!
I wish you good luck with your "journey" - I also want to welcome you to the club that no-one wants to join. I am sure, like me, that you will take great comfort in sharing experiences and knowledge with the other members. We are all in this together, and it is great that everyone supports each other on the site.
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Is It Really GCA?
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