Guess my symptoms started about June 2017, I was 52 at the time and reasonably active. I was just conscious of ageing rapidly and was so stiff in the mornings I had to walk downstairs sideways, the stiffness eased after about an hour. I started waking up really early, 03.30 - 04.30 everyday and had no idea why. By October I was having issues with my eyes, they were so light sensitive I had to either sit in the dark or wear a baseball cap if the lights were on. Things then deteriorated very quickly during early 2018, over the course of 5 days I went from walking 5 miles daily to barely being able to get out of bed. I had neck pain with bilateral shoulder, hip and thigh pain.
During all of this I made numerous trips to my GP, I suspect I singlehandedly restocked the blood bank with all the bloods they took. Despite all the tests done nothing was found (No raised markers). PMR eventually came up as a possibility and I was put on either 12.5 or 15mg of Pred, after 5 days I was able to walk 5 miles again (I now realise not necessarily very sensible!)
I was referred to a Rheumy whom I saw about May 2018 and he said "You may have atypical PMR" By June 2018 I was having terrible issues with my eyes again, it felt like the pressure behind them was so bad they might pop out. I also had a tender scalp, really sore jaws when eating, a disgusting metal taste from my tongue and very painful sinuses and teeth. I spoke to my Rheumy who said he was concerned I may have GCA. He put me on I believe 40mg of pred, this made no difference and a week later I was put on 60mg. Again the symptoms didn't improve and I was called in for an urgent appointment with him.
Sadly at this appointment the Rheumy was so angry he just started shouting at me.
He said I'd led him up the garden path and had forced him to make this diagnosis, he said I obviously didn't have GCA and that I must reduce the steroids immediately and very quickly. I was so shocked I didn't know what to say or do, I did mumble "But what's wrong with my eyes?" and he said "I've no idea"
The issues with my eyes and face did eventually settle down but it took about 4 months.
Later that year I presented to A&E as eye/face issues returned. I was seen by a charming consultant (Not a Rheumy) who confidently declared "I can categorically state that you don't have GCA, you're under 55 and you have no inflammatory markers, in fact I can also state that you don't have PMR for the same reasons and I'm going to write to your GP to tell him to stop your steroids" Thankfully my GP supported me.
Determined to avoid the hospital like the plague, I've basically done my own thing since. But the truth is I've had an horrendous time of it, In 4 years the lowest I've been is 7.5 but just seem to have constant flare-ups.
I then contacted the Rheumy dept. again in May 2021, apparently my old Rheumy had retired 2 years ago and they forgot to reallocate me. I was seen by a new Rheumy who actually sat and listened. He ordered some MRI scans on my upper and lower spine (I have spinal stenosis) and said that he would like us to work together to find out what was going on, he said he would see me again in 10 weeks time when the scans would have been done. I did eventually see him again after 10 months as opposed to the 10 week he had first mentioned. At this appointment he said the MRI scans had shown pinched/trapped nerves in my spine and he felt this could be part of my problem. He then shared the glorious news that he didn't think the original Rheumy had got the diagnosis right as this had been going on for over 4 years and this is not how PMR works! I was shocked, I didn't realise I should have been over all of this in 12 - 18 months with a steady reduction in pred of 1mg monthly, it makes me wonder what I've been doing all this time! (I hope you all knew!)
To say I was a bit miffed is to say the least! I then made a private appointment with Dr Rod Hughes at Chertsey Hospital to get a 2nd opinion and was seen within 5 days.
Sadly in amongst all of this my eyes/head massively flared up again, I had the worst headache ever for 12 solid days, at side of head by eyes. Difficult to focus eyes, feels like I'm wearing 10 year old glasses with the wrong prescription. The same disgusting metal taste in my mouth and my neck, shoulder, arms, hips and thighs more painful than ever.
Dr Hughes felt my symptoms were as classic PMR as they came, he was also concerned about possible GCA. I was on 7.5mg when I saw him, he recommended I increase to 30mg for 2 weeks to basically see what would happen, then reduce by 5mg every 2 weeks until I got to 10 mg, then to stay there for at least 2 months.
Towards the end of the 2nd week of 30mg the excruciating head pain did recede, it had been the weirdest thing, I awoke with a headache that got worse as the day wore on, by 7.00 PM each day I felt like I'd been out in the full Mediterranean sun all day, my face felt so burnt. It also felt like an electric drill was going straight through my temple.
So now to the crux of the matter!
I'm just starting my 2nd week of 25mg and my head/eyes are deteriorating again. I phoned my Rheumy and left a message last week asking for advice, nobody bothered getting back to me. In an ideal world I would like to stay with Dr Hughes, I'm not a big fan of Eastbourne Hospital! But how realistic is it to be treated 75 miles away? Also sadly I cannot afford to pay to see him privately long term.
Do I forget Eastbourne and just try and treat myself? Luckily I do have a small stash of pred.
I'm so sorry for moaning, I just want to sit and cry and cry.
Written by
Mike1964
To view profiles and participate in discussions please or .
You tend not to have to see a rheumy every few weeks and a good one will share care with your GP (not that they are that easy to see either). Did you ask Rod Hughes if he would take you on to his NHS list? He does sometimes. I would travel to be under his care. Your GP can refer you if he is willing to take you on. email him and ask.
As for your previous lot - how very unprofessional and ignorant. I would have made an official complaint about the one who shouted at you. And so many incorrect statements about PMR and GCA.
""I can categorically state that you don't have GCA, you're under 55 and you have no inflammatory markers, in fact I can also state that you don't have PMR for the same reasons" - well he needs to do some CPD in the PMR field. Because all that is disputed by the medical literature. He may not agree with it - but then, better doctors than he don't agree with him!
PS - not self pity - righteous fury at poor medical care.
Thank you as ever for your kind and prompt response PMRpro.Just a general question and not specific advice; does any of the above sound the same as how GCA works? Do the symptoms come and go? To say I'm a tad confused is the understatement of the century!
They certainly couldn't hand on heart say it is definitely not GCA - and it is something. The symptoms don't usually come and go BUT that isn't to say that it doesn't in the early stages. It can start up and then just burn out as well.
I had very similar eye poblems to what you describe with PMR at one time, We couldn't work out what it was unless it was an allergy to the contact lens stuff I was using at the time. The light sensitivity and burning was unreal
First of all, NOT self pity - I’d call it distress, and in the circumstances you have every right to feel this way. What a catalogue of error / lack of care from various medics!!
I agree with PMRpro, for the moment I’d stick with Rod Hughes. I don’t know him but from what I’ve heard (and from what you say) he sounds worth the fee and the effort. Also see if he will take you on as an NHS patient….worth trying.
Speaking of which, where does your GP practice fit int o all this? A GP should be able to listen, advocate for you and refer on where necessary (okay, we all know it often doesn’t quite work out like that…..).
Re your head and eye pain, I think I’d tend to take 30mg tomorrow and Monday, and on Monday see if you can get an urgent medical opinion (ideally from GP or from Dr Hughes).
And if you get visual disturbances, or the pain gets worse, then bear in mind it could tip over into possible emergency care. If you feel it’s worse than ever, ring 999 or get someone to take you to A&E, do not delay if you’re worried.
Really you shouldn’t have to go on like this. Please do see if you can get advice from, or preferably see Dr Hughes again.
Wishing you all the best. Please let us know how you get on x
What a confusing and horrific journey you’ve been on, both symptom-wise, and with the medical profession. Sometimes it’s difficult to advocate for your health…but at this time, you must. Do not tolerate anyone yelling at you, or long waits while you suffer.
Dr. Hughes sounds like the only professional in the bunch, and although you may not be able to afford his care long-term, it might be worth the cost and drive in the short-term. He may be the one to sort it all out.
Glad to know you have a “stash” of pred on hand…you may need it if your eyes deteriorate. I’d be calling emergency if those jaw/eyes/temple pain symptoms worsen at all.
Your story reminds me how awful some folks have it. In your shoes I’d be crying my eyes out!! You have every right to let it all out given what you’ve been through. I’m wishing you pain relief and good medical care moving forward that leads to a diagnosis and treatment plan.
I am appalled at the ignorance that your doctors have shown . I think PMRPro has listed all the inaccuracies. The time the disease lasts, your young age,the absence of blood markers in some patients, being done and dusted in 18 months and the being shouted at, when none of this was your doing . I agree you should stick with Rod Hughes at Chertsey and travel to see him. I go to the next town every three months and email and phone mine, she is worth it. Is he aware of your shoddy and downright incompetent and dangerous treatment thus far, be sure to tell him, this is complaint territory! Ask him if you can be on his NHS list. You need someone who has taken the trouble to read a few medical papers. Thank goodness your eyesight is not damaged. I definitely got blurred vision and unbearable pressure and light sensitivity in PMR which did became GCA in the end. Don’t feel defeated, I would cry too at the hands of these clowns. Big hugs!
No I don’t go private. I persuaded my GP to refer me to a Rheumatologist who was a well known expert in our diseases who happened to be in another town. He grumbled a bit and said that we have perfectly good Rheumatologists in Sheffield but he gave in thankfully. I am not sure that I would be so lucky in this climate though. I understood that “ choice” was a policy at that time. Real expertise is rare in PMR/GCA and LVV even in the Rheumatology community. I learned that here.
Is this a classic PMR symptom? ..... re your: "The same disgusting metal taste in my mouth........Dr Hughes felt my symptoms were as classic PMR as they came..." I have sugared cheese constantly but told by the medics that dysgeusia is not related to PMR. .....and get well soon!
Medics tell us a lot of things aren't related to PMR despite a lot of us experiencing them. I have a nasty taste in my mouth and a sore throat - have since PMR appeared. But it doesn't appear to affect my sense of taste - can still appreciate the finer things of life like wine and cheese ...
I have moved house and travel a couple of hours to see a Rheumatologist that I have faith in. I can do this because I have a partner who acts as driver. I too started with symptoms under age 55 and took a while to get diagnosis and treatment. I just do not want to go backwards in my treatment. You can do more with remote appointments now and after the first few consultations it may be a matter of a phone call to review results. It is grim being patronised whilst suffering pain and increasing symptoms
Hi Mike1964, it sounds as if you have really been going through hell with so much much misinformation. You will know from this forum that you were told an old myth by your new hospital Rheumatologist. Clearly he has no experience of PMR/GCA, whereas Rob Hughes specialises in our condition. If you can afford to have another appointment with him I would do that as long as your GP is on board with Dr Hughes treatment plan and you won’t have to have another battle about your treatment with your Rheumy.
I saw Rob Hughes myself once and it was worth travelling from East Kent to get the benefit of his knowledge. To some extent I have treated myself since then in terms of medication, with a lot of knowledge gained from this forum.
Good Luck getting to the bottom of what sounds like a grim journey. Best wishes, Chrissie
Think you have every right to feel sorry for yourself Mike1964. I am new to this sight and have only just been diagnosed and have not started treatment yet, but would say in your shoes I would be angry, the treatment you have received is appalling. The advice given to see if Dr Hughes could take you on as an nhs patient seems like the best idea. Hope you can get sorted soon x
No advice, just a hug, take care of yourself, & hope you can find a solution. S x PS surprised no mention of an optician or hospital eye consultant in your tale.
I am appalled at the way you have been treated, Mike! No wonder you feel like a good cry - I know I would!! I was diagnosed aged 53 in 2016 - by Rod Hughes - he would certainly tell your old Rheumy that being under 55 doesn’t mean you don’t have PMR or GCA, for starters! I hope you can get onto his NHS list. Please tell us how you get on. In the meantime I am sending you a big virtual hug. 🫂
Very sorry to hear about your terrible journey both medics and illness.
Rod is my private consultant but I also attend NHS hospital appointments if they come along. My GP knows I follow Rod's advice - helps that he's a proff, I think. You need to keep NHS onboard for blood tests etc and to look for other things. Usually their advice is very similar, but recently they did diverge for a while but now back in synch.
Once you have seen Rod in person you can arrange an appointment by phone. This costs £150. You only need to do this if you have a problem with your taper plan, so not too expensive once it gets settled.
Please don't treat it yourself. Your situation seems confusing even for the best rheumy and it sounds like there are multiple factors involved. As you know he will be testing the level of pred that impacts on the head/eye issue ( it seems to have taken a while to respond to 30). I would suggest you stick with Rod at least until you have the information you need about the impact of pred on your condition. This will be invaluable knowledge that will inform the rest of your treatment IMHO. EG, if it doesn't respond to higher levels pred tried for a reasonable time, then, from what I've learned on this forum, unlikely to be GCA. Best wishes!
I'm sure you make a lovely cuppa, but having re-read your post, it does not sound like a good idea to go any lower than 25 if your head/eye symptoms continue to be bad and don't settle. I'd suggest you phone Jodie and make a telephone appt to speak to Rod. Ring her rather than email. They only do private appts on Mon/Tue so may be next week now but that would give you the second week plus a couple of days to see what happens. I've found (through bitter experience) that you have to be proactive and ask for help rather than sticking with a taper plan that may not be working. If it has got a lot worse since you posted, I guess you could see if they could fit you in tomorrow.
Well I'm not totally sure if I'm just making things worse for myself (Because that doesn't sound like me at all! Because things were definitely starting to deteriorate again once I dropped to 25 for 4 days, I increased to 35mg on Saturday. By Sunday there was a marked improvement, bizarrely with the PMR bits - neck, shoulders/arms, lower back, hips and thighs, these had all exploded again and were the most uncomfortable since pre-pred. My head almost feels back to normal, just a throbbing sensation between top of ears and eyes, but not the horrendous 2 week headache from hell. I will ring Dr Hughes tomorrow, Houston, we have a plan!
Hmm. I think much wiser and more experienced heads than me on this forum would say don't chop and change, and if you have a good consultant stick to their plan and ask before changing it.
I am so sorry you are going through this. I would actually print out your medical story and give it to the doctor (any you see). It is very well written and clearly explains what you are going through. I hope you are able to find answers ASAP.
Thank you artfingers. Funny I only sat down to write a quick post, but the more I wrote the crosser I got! I do feel in a much better place today though
Mike, I'm so glad you reached out on this wonderful forum. You have every reason in the world to moan after the dreadful way you've been mistreated. I have nothing to add to all the advice given by the PMR gurus, as I like to call them, but I do wish you the best of luck in getting the medical support you need as soon as possible.
Sorry you’ve had such an awful time. Just to say that I saw Rod Hughes once privately, 130 miles from where I live, and a few months later had an NHS Appt with him offered. I know others have had the same thing in the past.
Hi Mike - a bit late joining the Thread (Family Day) l won’t reiterate what the others have said only to concur what an awful time you’ve had but please do get back in touch with Dr Hughes via his Secretary to arrange to see him again & to ask to join his NHS list.
I’m a long timer at the old PMR but when l moved house 3nhalf years ago there was No Consultant Rheumatologist in Post at the local NHS Hospital - so l asked who l could see Privately - l did this & he agreed for me to see him on the NHS but my GP had to refer me & l had to join the Waiting List but it wasn’t a particularly long wait. I do have to travel & it’s about 50mins or so.
I do hope you can get some answers & more importantly some treatment.
Your story makes make my hair stand on end Mike! I havnt had GCA as yet so I can not be of any help a about it . I think a little self pity is well deserved in your case ! My tests have never showed anything . I am luck (in hindsight) thatour health system was a little more relaxed about it . They said try prednisone , if it helps , u have PMR. It helped but it became obvious very soon , that they did not know where to go from there . I found the ‘other’ Brit site and have really followed advice on here and treated myself . It leads you down different tracks in life . You find other things in life to enjoy at a less strenuous pace . I hope you find some peace , calm , acceptance , something less strenuous to enjoy and most of all a GOOD Dr !
Thank you Flutterbies. I do feel more at peace now, the joys of a good moan! Also a plan forward, I will ring Dr Hughes secretary tomorrow, hopefully a space on his list may appear
Hello Mike,Don't feel qualified to add any advice to the good words provided here by others more experienced. But I did want to add to the positive vibrations being cast in your direction! I sincerely wish you the best. And thank you for sharing, I truly believe the emotional support gained on this forum is as important as the medical advice.
“You may have atypical PMR"…is a meaningless statement .. or rather it means your doctor didn’t join up the dots.
I was told similar by my GP who had failed to diagnose my GCA after 18months of appointments.
Like you my blood markers were not considered high enough to cause concern…but I did have a lot of other typical GCA symptoms. Just because you don’t tick every box, doesn’t mean you don’t have the illness…bit of lateral thinking required sometimes, and an open mind.
Sounds as if Dr Hughes is not 100% sure you have GCA, or I would have expected him to start you higher than 30mg, but certainly as others have said, stick with him…and do ask if he is willing to take you on as an NHS patient in future.
As your eyes/head deteriorated when you reduced, that’s an indication it could well be GCA, as is the improvement when you increased to 35mg…good move on your part.
I found my head & eye issues increased in severity as did all my other symptoms over the months pre diagnosis, but that’s not to say for some people they can be variable at the beginning.
Others have commented on your previous treatment, so I won’t add anything on the matter, apart to say I agree with PMRpro.
Hopefully you can get another appointment with RH in near future, and please keep us updated…
I had PMR followed by GCA then Lupus and RA plus a few interesting add-ons. My first rheumy was lovely and eventually told me I was completely cured (really?) I rushed into A&E with all your symptoms and put straight on 60 pred. second one said she was moving to a much better hospital locally, trashed all her colleagues and said I should follow her, which I did. She had disappeared/left/gone. Third one said I couldn’t possibly have all the things the blood tests said I had and said she couldn’t cope. Back to my original hospital I saw a wonderful rheumy who packed me straight into hospital and put me on a drip. He’s looked after me wonderfully since and I feel very safe 6 years on and still having fortnightly blood tests and am now on a low dose of 5 pred. Persevere, good rheumys are out there, they are just hard to find! Good luck!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Not sure what to do!
GCA False alarm! How quickly can I reduce pred?
What happens if Prednisone isn't taken for PMR?
