Having been having scans and other checks last week they have told me today that I have had a stroke! So maybe the vision loss was that?? I am so confused I have seen so many people all with different ideas but mainly only one thinks GCA the others think It isn't due to my age! Meanwhile on with the night sweats ! ... Actually this means it has taken them five weeks to find that I have had a stroke, not too good really but I guess it isn't that simple!
Holy moly what next!!! Stroke apparently! - PMRGCAuk
Holy moly what next!!! Stroke apparently!
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annettepackham
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And may as well throw in the insomnia as well!!
I had the stroke 1st then 1year later diagnosed with pmr. It all makes sense now. Good luck, lay off the salt, get more potassium and vitamin d. Also no stress.
Prednisone works, makes you CrAzY but works.
PMRproAmbassador
GCA can cause stroke - and that is part of the reason that symptoms of GCA or stroke should all be taken seriously and investigated properly as a medical emergency, not brushed under the carpet and put down to "age", "just headaches" or any other rubbish. The investigations you had last week should have been done immediately.
Whilst the signs of GCA are often missed due to GP ignorance, many are the same as in stroke - and its high time GPs admitted they are often falling behind in sending their patients to hospital with a letter pressed in their little paws. When you have these sort of symptoms you are probably better to call 999 - because paramedics who fail to take a patient to hospital and something nasty happens are investigated thoroughly and their registration is on the line. In Yorkshire they are also taught to recognise possible GCA - which appears to more than some doctors are.
in reply to PMRpro
I never had any GP problems when I complained about the symptoms. They were all happy to refer me to have it looked at. I don't mean to contradict you or anything. It's the Rheumatology / Ophthalmology where diagnostic expertise is lacking and not knowing what to do with it. We read things online (biopsy etc). The reality is completely different.
On the three forums in the UK there a large numbers of patients who don't even get to see a specialist to start with because their GPs drag their feet or dismiss them as malingering or merely "old". I had normal blood test so there "couldn't be anything wrong".
I too had poor treatment by a couple of rheumies - at least I only have PMR - and there are a few ladies who have their rheumy denying it can possibly be GCA because they are "only in their 40s". You are quite right that the specialists need to learn too - but an on the ball GP is essential to get through the gate to the secondary care level in the first place unless you are poorly enough to dial 999 and be taken to A&E where an A&E doctor may recognise possible GCA but then the patient is thwarted by others who think they know better.
in reply to PMRpro
Yup, yup..essentially, problems are from everywhere. If GP refuses a NHS referral (mine did), you can opt to pay for a private one (a solution) the option that I took. But once you get to Rheumatology which you paid for, knowing you have all the symptoms you would assume that you get diagnosed promptly and get treated. No, not really.
I know those excuses..no biopsy, doctors are thinking about how much it will cost and who's going to do it, any expertise available in hospitals..they eventually say, no, we don't do it. Quite frankly, I doubt if these "specialists" really care much (again, there are exceptions), they haven't got the vision loss. Their career is safe. All is well except patients.
One contributor on another forum is insistent that going private means you get good treatment, going NHS does not. But in my experience it doesn't matter - a poor clinical rheumatologist is poor whoever is paying them and a good private one will add you to their NHS list as soon as they have made the diagnosis. But there are also patients whose specialist says GCA - and a GP pooh-poohs the diagnosis and refuses to prescribe high doses of pred. Or a patient who has 3 specialists, 2 in other fields, one rheumy (all appropriate) saying GCA - and the original rheumy disagrees.
Sometimes you couldn't make it up...
in reply to PMRpro
I see a lot of problems surrounding Rheumatology (problem 1) then GP-related issues (a separate issue).
Treatment -wise, I do not wish to comment as I don't know enough and that's between the consultant and his /her patient. Useful if a test looking for a genetic marker of this condition would be made available. Rheumatology is a troubled area. I also notice Rheumatology doctors look for certain "type" of patients for condition A or condition B and that's no medical science. It's a boodoo medicine.
So true. Diagnosed gca and PMR in June 2014 by neurologist. Yesterday I saw a private Rheumatologist who denies both conditions. So been taking steroids and a million other drugs for 8 months leaving me with diabetes high cholesterol anxiety and depression. Don't know what to think now as I felt I had all symptoms after a lot of research. Rheumatologist feels its just my fibromyalgia which he diagnosed 7 years ago. Not really convinced on that.
Did it improve with pred? Fibro pain doesn't respond to pred, PMR pain does. And you can have both.
There are rheumies who can tell the difference - and just because you had fibro 7 years ago it doesn't actually matter whether he misdiagnosed PMR as fibro (usually because the patient is "too young" for PMR and has normal bloods) or whether PMR has come along in the meantime.
Yes it did improve with Pred within a day or two. Yes he said at 50 too young for diagnosis and since esr normal now . I suspect that is because on 25mg Pred? However esr high before Pred. Also had negative artery biopsy but apparently that does not always rule out GCA. Thankyou for your advice.
The pred combats the inflammation and that reduces the ESR - so it SHOULD be normal on pred. Fibro doesn't raise ESR, there is no inflammation. Biopsy in GCA is only positive in about half of cases.
Time for a new rheumy...
I think so too. Only sorry I wasted my money on a private one since been waiting since June on nhs. They certainly mess with your head!
Depending on where you are - can recommend a couple of good ones...
I live in N.Ireland. However perhaps would consider travelling to see a Specialist on GCA & PMR as feel it's going to be a long journey for me.
Including the mainland?
Sorry I meant the gca/pmr long journey. I would consider seeing specialist if reasonably near an airport on the mainland. Many thanks.
I have sent you a private message
Caroline, there's an excellent rheumy with a special interest in PMR/GCA in Chertsey, about 15 miles from Heathrow.
Yes pmrpro let me know about him and also one in Leeds. I am considering flying over to see one of them.
I can highly recommend the one in Leeds, I have seen her due to being young PMR with ? GCA. Very broad minded and does not dismiss me on age or bloods, very thorough. Runrig 😃
Yes I am considering flying over to see her. Do you know if she sees private patients as I doubt my NHS Trust would refer me? I am only 50 and was diagnosed at 49 with gca and pmr by a Neurologist.
Hi I'm afraid she definately doesn't see private patients, as I asked about that when initially organising referal. Sorry 😗 I live 300 miles from Leeds but my GP was happy to still refer me. I see no reason that your GP should ask for a 2nd opinion from Her, it would cost them no more than a local 2nd opinion. as you will be paying travel & accommodation costs, She only holds morning clinics. Runrig x
in reply to Runrig01
Sounds like this one is the only doctor in this country who deserves a medal in helping patients with GCA in patients under 50.
in reply to Runrig01
May I ask if you all have the raised "veins" over your temple(s)? I get it when I am in a bath as the heat makes these more noticeable but then veins get hidden again after I cooled down. To put it simply, do you have these raised veins when visiting a clinician?
Runrig01 in reply to
Hi Femtree, I often find in the evenings my temple areas are very tense, but my veins are hidden by my thick hair, but they are not visible to clinicians. Although the Professor in Southend did notice my scalp was quite swollen and hot. I'm sure there are other good Rheumys for people under 50, it may be others haven't been so forthcoming with positive experiences. Also I'm not sure there are many of us on the forum with GCA under 50. The last poll that Kate did showed 5% were under 50. Biopsy is only positive in about 50% of GCA cases, some of this is due to skip lesions, some poor technique. My biopsy was taken after being on steroids for 20 months and the vascular surgeon told me it would be negative, and that Rheumy should not be putting me through it. I still consented for the small chance of them finding "the evidence". My diagnosis recently was based on clinical symptoms and ultrasounds undertaken by the 2 specialists. Hope this helps 
in reply to Runrig01
At last!!!! so glad for you. Thank you so much. Perseverance has finally paid off. May I ask how many doctor Have you had who told you, no, you haven't got GCA?
Runrig01 in reply to
My first Rheumy said "you can't be that unfortunate to have atypicsl PMR & atypical GCA". The 2nd I seen once he agreed it was possible and ordered MRA and neurology opinion. Unfortunately when I went back to see him
He had left the trust. So I was transferred to my 3rd Rheumy who was skeptical I even had pmr & dismissed GCA symptoms for a year. only took me seriously when I told him about travelling 600 mile round trip for expert opinion. Don't give up, you know your body best. Ironically I work as a ward sister for the trust that let me down 😙
in reply to Runrig01
runrig01 Thank you so much. It is interesting to read that people are receiving Neurology opinions on this condition. In a way, GCA is a Neurological condition as it is a systemic disease..I strongly feel that people are going through such a tough time with dismissive Rheumatology (generally).. Only started to take you seriously after 600 miles round trip. I admire your perseverance. Your story needs to be heard by all Rheumatologists in my personal opinion. I wish things didn't need to be so hard for you whilst you had severe symptoms involving cerebral arteries. Thank you for sharing.
Runrig01 in reply to
Your welcome. The only reason I was seen by neurology is because I had tongue discolouration but also my tongue twitched all night about 2 nights a week. They wanted to rule out MS or MND, thankfully ha e neither. Neuro said it sounded like tongue claudicatoon 😗
in reply to Runrig01
Tongue discoloration / twitching...!! Sounds so so ischemic!! It must have been so scary for you. I'm amazed that you had to see so many doctors before you got the correct diagnosis. You clearly knew what it was long before you got all the "medical evidence" to support the diagnosis.
Runrig01 in reply to
I've known from the beginning it was GCA. After 2 A&E visits, with the same attitude as Rheumys I decided not to become a regular attender, being labelled a hypochondriac or anxious. So reduced Pred till some symptoms were visible. I also kept a record of Pred doses and when new sptoms occurred. My case is unusual the Prof says he has never known someone to go so long before diagnosis. Some mornings you would wake wondering is this the day I won't be able to see, but you have to remain positive and keep pushing. 😃
in reply to Runrig01
" My case is unusual the Prof says he has never known someone to go so long before diagnosis. "
I don't know about that...if I'm blatantly honest as a "mere patient". He probably said so, mainly to justify the GROSS incompetence in Rheumatology failing to diagnose you quickly. He probably wouldn't have thought his Rheumy colleagues were totally incompetent. You went through hell - I have been visiting A & E myself (and it's not an ideal situation and I absolutely hate presenting myself at A & E!) It would have been nice if your Prof said " I'm sorry it took you for so long to get this condition diagnosed whilst you had classic symptoms, it must have been so hard to be left in limbo with alarming symptoms for so long". I'm sure different people experience different symptoms of GCA as this illness develops in different people who have different genetic markers reacting to this inflammatory condition. I had "hallmark symptoms" of GCA (e.g. jaw claudication, polyarthralgia etc etc) as early as 2011/12 when I started to "look" as to what this could be. I was scheduled to have a gynae procedure which had to be cancelled due to the terrible inflammatory pain. Looking back, I had eye symptom as far as 2009 but I was too unwell to attend my eye issues at the time. This is a serious illness and it really gets me when patients are dismissed as you were when medical staff could have simply paid attention (and that's what they are SO WELL PAID for). I sincerely hope that the organisations such as Vasculitis UK and PMRGCAuk would be able to address this issue head on. Thank you so much for your helpful "tip" to persevere and stay positive!!
in reply to 11caroline29
I read in an article, you do not even need to have a giant cell in your biopsy to have this condition diagnosed.
in reply to 11caroline29
caroline
"So true. Diagnosed gca and PMR in June 2014 by neurologist. Yesterday I saw a private Rheumatologist who denies both conditions".
Your comment totally confirms my doubts on Rheumatology as an unviable diagnostic expertise for GCA. Great thread btw
11caroline29 in reply to
Unfortunately I wanted a second opinion from a Rheumatologist as after 33 years working in NHS I am being pushed into ill health retirement. I have had so many side effects to the high dose steroids and flare ups on reducing that I have only managed to get down to 25mg since July. However it's a small sacrifice compared with losing your sight !
in reply to 11caroline29
After 33 years of dedication, you would have thought you would get diagnosed and treated seamlessly...!! Really appreciated your posts which made me feel I wasn't alone in this.
annette:
I know what you mean. Is your vision returned to almost normal now? Was it MRI which you had or angio? Regular MRI only shows something fairly obvious (it may now show subtle changes or swelling). I recently had MRA but was warned that it may not show issues with medium / smaller vessels. It was in Japan where they invented a scan you can actually see / evaluate the blood flow in patients.
annettepackham in reply to
I had a ct scan first which appeared normal and subsequently an MRI , an MRV and lastly the MRA.
the MRV showed that it was an ischemic stroke and the MRA confirmed there were not any bleeds, so just disrupted flow causing the sight loss because of the position of the stroke in the rear occipital lobe. If that makes sense !?
in reply to annettepackham
Annette, thank you for your reply. I'm utterly so shocked by what you said. How long ago did your stroke happen to you? I bet you have a story to tell..live to tell the story! Thank you for sharing.
CelticPMRGCAuk volunteer
Annette, no wonder you are feeling so frustrated. I'm appalled at the time it has taken since your investigations in hospital to come up with a diagnosis of stroke. You would think it would be one of the first things to be ruled out. You would also think that doctors know that there can be many reasons for sudden problems with eyesight apart from GCA, including TIA, detached retina etc, and that they would immediately carry out all the tests necessary to rule each out. Plus patients diagnosed with GCA are at risk of stroke.
If it was a clot to the brain as opposed to a bleed, I'm assuming they have now got you on both aspirin and a blood-thinning medication. You may, of course, have already been on aspirin as most people diagnosed with GCA are prescribed small dose aspirin alongside the steroids.
It may be helpful to mention here that everyone diagnosed with GCA should also have a chest X-ray at the outset which should be continued every 1-2 years to rule out the risk of aortic aneurism.
I would say, MRI is probably better. Exposure to chest X-ray has the high radiation and repeated chest X-ray would be best to avoid in my personal opinion.
I'm also very curious as to the eye condition associated with GCA. You don't get to read about this much, the presentation, what sort of changes in your eyes, telltale signs etc. I discussed with ophthalmologist before when my vision was much worse. He was a very educated doctor and thoroughly helpful. But he said he knew nothing about how GCA-related eye would look like. Sadly, all too often, it's only patients who would need to connect these dots ourselves.. Only after you had a stroke / loss of vision etc, you'll finally start to get more attention (but this still does not guarantee you would get diagnosed).
If GCA is suspected, a good ophthalmologist will examine the back of the eye for any signs of slight paleness or swelling of the optic disk - a sort of halo effect.
in reply to Celtic
Celtic Are there any links for this please?
I noticed people have been commenting different symptoms (eye) with their GCA.
ferntree, yes it is quite possible for people suffering from GCA to present differently with their symptoms. Whilst I had the classic symptoms of severe head pain, jaw pain on chewing, nausea, vomiting, weight loss and blurred vision, other patients have presented with other symptoms such as ear pain and/or neck pain. Have you read the BSR Guidelines for the diagnosis and management of GCA. If not, here is a link:
rheumatology.org.uk/include...
in reply to Celtic
Celtic Yes, I have read and thank you for your comment. annette, thank you for your great thread. I hope you will find out more about your stroke and your vision loss would not be permanent. Whilst the guideline would be useful, I feel GCA is still an under-recognised condition by Rheumatology (?) I remember John at Vasculitis UK commented on this.
Pardon me? GCA as a cause of AION (anterior ischaemic optic neuropathy) should be familiar to an ophthalmologist. It causes (as Celtic has said) the optic nerve to appear pale due to poor blood supply and damage. But that is for more chronic cases really where the blood supply is poor as opposed to stopped altogether - like the difference between angina and a heart attack (despite what one doctor told a patient there is a difference there too).
Blindness in GCA is due to the blood supply to the optic nerve being slowed or stopped. The optic nerve is damaged because of lack of oxygen and the nerve can die off. Once it is gone you can't recover the vision because it is nerve damage - it isn't actually the eye itself that is damaged.
One of the major problems with GCA is the wide variety of symptoms that patients can appear with. You can have GCA without it affecting your head, or without any visual symptoms at all. GCA damages the elastic layer in the walls of certain arteries and that may be seen in imaging, occasionally in the biopsy, but it doesn't run all the way through the bit biopsied, it skips. Until they can identify a marker in blood it will remain a question of clinical expertise. And that is sadly lacking in today's doctors - they all want a blood test or picture of some sort and 100% certainty.
Unfortunately medicine and biology don't work like that.
in reply to PMRpro
I seem to have seen Annette's post re her eye doctor...similar experience..is there any info sheet one can take to show to eye doctors at all? Would be very useful..thanks. They know I have Vasculitis but generally, not interested in GCA. What is the best imaging for GCA retinal disease, may I ask? MVR? It's been hell...Thank you for your advice, PMRPro x
They should be able to understand this
patient.co.uk/doctor/giant-...
and this
emedicine.medscape.com/arti...
and this is also very good
vasculitis.org.uk/living-wi...
They may not care too much about the names - GCA is a LVV, a large vessel vasculitis. LVV is not only GCA. there are others. In the same way as a Labrador is a dog, but not all dogs are Labradors.
In GCA what they are looking for is signs of AION, problems with the blood supply to the optic nerve and that is visible with a retinal exam looking through the dilated pupil, no other imaging required. I don't quite get what you mean by "GCA retinal disease" - the retina isn't diseased, what is always affected in GCA is the blood flow to a part of the body and in the case of the eye it is blood flow to the optic nerve and the cranial nerve which is what causes double vision when it occurs. Very occasionally GCA may occlude the retinal artery but it is rare and whether imaging could predict it I don't know. I understand it to be more like a stroke - I suppose you might see some narrowing of the artery.
in reply to PMRpro
Hi PMRPro
Thank you for your links and helpful follow-up. In my case, central retinal vessels are said to be affected 
I was looking up GCA and eye inflammation last night. I did also manage to find re. the ischemic optic neuropathy. I have ongoing Cardio issues spookily similarly shared by other members. I consider my eye issues to be the results of cumulative damage over the years (not in months). This condition has been left progressed for so long (e.g. years) prior to start of the treatment. I'm currently waiting for MRA results. I had strokes in 2009 when my eye issues started but not addressed at all due to the condition I was in. It seems it takes years to get this diagnosed. Thank you for all your help. xx
Yes, I'd had at least 5 years of PMR with no pred before it hit like a bus and even then it was another 6 months before I got any pred. Part of the trouble with the vasculitides is that they vary in presentation so much and a rheumatology specialist interested in vasculitis is probably one of the last people you will get to see as they are rare birds! Like GCA. Then anything vague seems to cause instant boredom rather than a desire to investigate.
The long term effects of vasculitis are known to be increased rates of arterial problems including aortic aneurysm and peripheral arterial disease. PAD should cover a lot of things. And inflammation does damage when left uncontrolled - as I have explained many times to the people who are terrified of taking pred. So quite why they aren't more interested in follow-up does baffle me a bit. But it all costs money...
in reply to PMRpro
Thank you so much PMRpro. I saw one Rheumy with interest in Vasculitis which ended quite badly. (He was a colleague of my Rheumy..very tricky!!) He wasn't interested in my case at all (and it was a private consultation). He was straightaway very dismissive and he refused to listen to my symptoms. Yes, given the amount of damage this condition may cause long-term (and this may kill you eventually), it seems nobody knows how to treat this condition correctly (so far in my limited experience going back a few years ago) and by reading what others had to go through. I also quite disliked the idea that a specialist, who says, he has special interest in Vasculitis, he couldn't get rid of me quick enough. My own Rheumy, as helpful as he has been, I doubt he quite understood how much suppression this condition would require. I would dread to think this 'vasculitis' Rheumy would destroy the relationship I have built up with my Rheumy.... Thank you PMRpro for your great insights!! x
If I have paid someone they might at least be polite enough to listen and get rid of me in a pleasant manner. How rude! Bet it wasn't the 70 euros that is standard for a private consultation here!
in reply to PMRpro
So thoughtful, PNRpro.. I printed out your advice and I will try to digest what you kindly brought up for me today. Cannot thank you enough for your excellent help. xx
I was not diagnosed early enough with GCA ...textbook case...but no one had read it lately. My right eye began to have a half shade , somewhat like a sheer curtain effect come over it. I got to the ophthalmologist who sent me to a retina doctor and he diagnosed it as my optic nerve was leaking.. He had a test that determined what was happening to my optic nerve. He said he had been a doctor for twenty years and it was only his fourth brush with GCA . So it is rare.
in reply to 30048
This eye doctor deserves a medal
30048 in reply to
Actually he deserves two medals because on a routine eye exam he diagnosed it again when my rhuemy said I could not be having a flare because my blood work was good. He insisted on a second opinion which confirmed it was a flare . GOODBYE RHUEMY .
Thank you 30048. You hit the nail for me - thank you. Too many Rheumies are putting people at risk thanks to their failure of not listening to patients!! I started to get help last year. I was having so much troubles as early as 2011. Thank you for sharing.
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