Is it time for Rod Hughes ?

[AgathaC]

I’ve had three weeks of temporal pain with constant ache behind left eye and night sweats. This is not my first episode (see bio). I have had a comprehensive push back from Rheumatology at both Norwich and King’s Lynn. My age is the over riding issue they have. Is now the time to see Rod Hughes ? I couldn’t bear it if I was dismissed outright again based on the clinical results rather than my symptoms. For those who have seen him, does he keep an open mind ? I’m close to the end of my tether.

[PMRpro Ambassador]

Age shouldn't be getting a mention since you are WELL inside the "over 50" criterion - and it is only a generalisation anyway. I always quote the man in S Wales who died of stroke due to undiagnosed GCA missed repeatedly by doctors - because he was 37. The pathologist found it. They are always right ...

Rod Hughes ALWAYS keeps an open mind. That is why we recommend him.

What tests have been done at the N&N and KL?

[AgathaC in reply to PMRpro]

Interesting thank you. I had CT, eye test, bloods and ultrasound in Norwich in 2021. All negative but I had been steroids for a week and had zero symptoms. On Tuesday I had bloods, CT and carotid ultrasound at Kings Lynn, all clear. Oh and eye test and it was the eye doctor who called Rheumatology as he was thinking GCA. Although I was outside the office when he called Rheumatology I could still hear the conversation. Rheumatologist said too young”she’s too young, our cut off is 60, tell her it’s ocular migraine”.

[suzy1959 in reply to AgathaC]

Unbelievable!

I see Rod Hughes and have done for years. I don't have GCA but have had a very resistant PMR ( 13 years and not done yet) and he has never denied my reality. I got PMR at 52.

[AgathaC in reply to suzy1959]

Wow OK. “Never denied my reality”, that’s reassuring. I’ve had one Rheumatologist say to me “if it was GCA you’d either be dead or blind by now”. Will book an appointment with him. Thank you.

[PMRpro Ambassador in reply to AgathaC]

“if it was GCA you’d either be dead or blind by now”

And that is another dollop of drivel. You can have LVV for many years causing damage to blood vessels and organs that never affects your vision and makes you merely ill - not dead. That is why it tends to be difficult to diagnose ...

[montebello in reply to PMRpro]

How WOULD one attempt to diagnose LVV that has not caused a rise in inflammatory markers? I've often suspected it in my wife.

[PMRpro Ambassador in reply to montebello]

No idea - I think it is a real problem because the symptoms tend to be very non-specific.

[SnazzyD in reply to AgathaC]

What, because they would have missed it?? How unprofessional. I like to say something rude but it might scare the horses.

This is the NICE guidelines for GCA. You don’t even need to start wading through before you come to “over 50”. Bullet points 1 & 5.

[PMRpro Ambassador in reply to SnazzyD]

No link ...

[SnazzyD in reply to PMRpro]

🤨

cks.nice.org.uk/topics/gian...

[AgathaC in reply to SnazzyD]

Thank you. It clearly says “Over 50”. That criteria doesn’t seem to apply in Norfolk !

[PMRpro Ambassador in reply to AgathaC]

Maybe they don't know their numbers - 5, 6. look very alike ...

[DorsetLady PMRGCAuk volunteer in reply to AgathaC]

That's a disgusting comment - and that person should be reported... hope the ophthalmologist told them so as well!

Good luck with Prof Hughes.

[AgathaC in reply to DorsetLady]

Thank you. This group is amazing. Will report back.

[PMRpro Ambassador in reply to AgathaC]

What utter drivel, 60 indeed. They want to do some CPE in GCA and its guidelines.

And to be honest - if an eye specialist is thinking GCA, I'd take notice.

[AgathaC in reply to PMRpro]

Thank you. If I’m honest I think something was bubbling away in the background before my AstraZeneca jab. Nearly lost my 17 year old son at the start of 2018 and started to get what I thought were odd menopause symptoms not long after, sore hips, evening sweats etc. I think the Covid jab just pushed me over the edge.

[PMRpro Ambassador in reply to AgathaC]

Very likely - it isn't a cut and dried thing at all for many.

[AgathaC in reply to PMRpro]

Thank you for your support. Will feedback after my appointment.

[Zappata in reply to AgathaC]

I lost my daughter 18 months prior to onset. I was 63 when diagnosed but it had been rumbling at least a couple of years

[suzy1959]

Please do

[Angelsmummy]

One word SHOCKING!…..Do these damn so called “ experts” not realise that they are playing around with peoples lives/ health??Really hope that you can get to see Prof Hughes,,even if it is to put your mind at rest,but even in my little knowledge of GCA ,it sounds pretty likely!I was undiagnosed for nearly a year,suffering dreadfully with head,ear,neck,pelvic girdle pains,Honestly felt like taking my own life as had zero QOL ,if it hadn’t been for looking after my OH and animals,I think I would have done the deed.Once I lost sight in one eye one morning and got rushed into hospital,GCA was confirmed.For anybody getting the same bad treatment and advice that you are getting A,I would say,get a second opinion!My very best wishes to you and please let us know how you fare won’t you!xx💐💐💐😜

[AgathaC in reply to Angelsmummy]

Thank you for your message and I was appalled by your story ! I often wonder if we would be treated differently if we were a middle aged man in a suit. Will absolutely report back x

[Bcol in reply to AgathaC]

I would like to think that, in this day and age, that thought could not possibly be correct. Sadly, I think that it very likely could be, 😢

[Gimme in reply to Bcol]

I'm certain those old mores still exist. I consider that to be the reason that it took me 20 years to get a diagnosis for my PMR. It all initially kicked off mid 40s, but if a peri menopausal woman turns up with aches and pains and debilitating fatigue, it is very easy to say, well, of course you do dear. Even though I happened to be a woman in a suit, it took a very young newly qualified doctor to finally twig what was wrong with me.

[AgathaC in reply to Gimme]

20 years, that must have been extremely tough. So sorry to hear that.

[Groggrim in reply to Gimme]

Goodness me that resonates Gimme. I reported random aches and pains and fatigue to a GP when I was perimenopausal. I think I was mid 40s but my meno symptoms kicked in after a hysterectomy at 38. After a couple of years umming and ahhing Chronic Fatigue Syndrome was the diagnosis. I wasn't happy so I paid for a consultation with Dr Mitchell at the National ME centre. He concurred with the diagnosis. CFS is on my medical records and is the reason I was awarded disability payment. Perhaps, in light of my family history, it could have been low grade PMR rumbling in the background. I never did 'recover' from CFS and had to give up a job I loved in 2006.

[Angelsmummy in reply to AgathaC]

Doubt if it would make any difference to be honest.So many of these people we deal with just have tunnel vision and will not be swayed in their own views.I am very lucky now that my new Rheumy is finally allowing me to do what I want as I categorically told her that I have had so much help on this forum and would like to put DLs tapering process into my own treatment rather than go with the general ideas bandied about by “ guidelines” We are not a number ,we are individuals who need to be treated differently according to our own specific needs.Onwards and upwards I say,and my very best wishes to you and hope you get answers SOON!xx💐💐💐😜

[Bcol in reply to Angelsmummy]

I was very lucky, a) I never had/needed a Rheumy, all my needs/treatment was met/sorted by my own surgery and doctors. b) I never had to fight for anything, after the first month they left tapering to me, provided whatever Pred I asked for, backup, blood tests, Dexa scans etc, that I needed and never put me under pressure. They were brilliant.

[Angelsmummy in reply to Bcol]

Lucky you B,there are a load of good ones around,but personally I blame my Drs surgery for my eye sight loss.If onlysomebody had ordered a blood test,MAYBE I things would have turned out differently,but what is done is done,but my mission is to make sure that whenever people come onto the forum to keep reinforcing the need to get help for things that just aren’t right with their symptoms ,especially their eyes.Stay well!xx👍😜

[PMRpro Ambassador in reply to Angelsmummy]

It was a case like yours that set Prof Dasgupta off on his GCA journey because he knew it needn't have happened. But sometimes I wonder if we have progressed at all with some doctors.

[Angelsmummy in reply to PMRpro]

Hiya PRO ,good holiday?Last good day of weather for us today ,just about to go in garden to edge the flowerbeds!You are SO right,as usual.I would not want anybody to go through misdiagnosis and lose an eye like DL and myself.More education is needed.Maybe in training for GCA or PMR ,these hospital Drs or consultants should ask for “ sufferers “ like many of us,to go and give a talk about what we are going through,see it through OUR eyes!( or in my case,EYE!) xxx Have a good day!xx🌞🪴🌷😜

[Groggrim in reply to Angelsmummy]

Absolutely agree with you Angelsmummy. 'We are individuals who need to be treated differently according to our own specific needs.' I just read this in a book I am reading by Dr Rangan Chatterjee.

[Angelsmummy in reply to Groggrim]

Aaah,maybe I ain’t as stupid as I look then.,😀😜👍

[Groggrim in reply to Angelsmummy]

I never said that......😉

[Sophiestree]

I have LVV and like you had CTs, MRIs, Ultrasounds etc constantly and it was only the PET CT that gave me a diagnosis. I would report the doctor who made that comment. Plus I thought Norwich had Max Yates who was one of the good guys? Or have I got that wrong?

[AgathaC in reply to Sophiestree]

I think you’re right, I was advised to try and see Max Yates back in 2021 but had no response to my email and couldn’t get past the original person that dealt with me. I’m reluctant to name names and aware that I’m atypical aside from my actual symptoms. I bet you a million pounds ‘Health Anxiety’ is on my file by now.

[Sophiestree in reply to AgathaC]

I totally hear you. The amount of misinformation on my notes is breathtaking but i can't be bothered. I understand you don't want to name names,but you could put a complaint into PALS and say what you heard without naming anyone and that you feel incredibly let down by the whole experience and if anything life changing happened to you, you would lay the blame firmly at their feet, and then say you would like to see Max Yates. You may be surprised. And if not, then have a weekend in Surrey!

[Naim1]

Yes yes yes!....See Prof Hughes.

He understands & he listens.

Plus....his secretary is brilliant.

No hesitation....see him.

[AgathaC in reply to Naim1]

Thankyou. I’m waiting to hear back from his secretary. Will report back.

[Naim1 in reply to AgathaC]

Good luck...hope all goes well🙏🙏

[Gimme]

There were times when it was pretty bad, but it followed a flaring and remitting pattern initially, so I had periods when it wasn't too bad, even though I knew it was still there. It's odd really, because my doctor gave me diclofenac for it and that worked pretty well in the early days (but nowhere near as good as pred), but it only worked for a few weeks at a time and then I had to take a break from it. Looking back, maybe he did suspect PMR, even if NSAIDs are not really the usual treatment. But PMR was never mentioned. I was wondering for the last few years before PMR diagnosis if I had fibromyalgia, but it never quite fitted. I had never heard of PMR. Each episode got worse and lasted for longer. I only got a diagnosis in the end because I was having an asthma check and I broke down in tears because I was in so much pain. The nurse made me an emergency appointment with one of the GPs and when I looked back at my notes recently, I saw that it said for depression, but we talked about the pain and how physically ill I felt and he went right to PMR, especially as I just happened to mention that I had had pred for a chest infection a few weeks before and the pain almost went during that time. Anyway, the rest is history. I am under no doubt that it was PMR all that time, now that I know the symptoms and how it makes me feel.

EDIT: That was a reply to Agathac, higher up the page. I must have forgotten to press reply.

[Zappata in reply to Gimme]

It's amazing that so many doctors don't link pain with depression. Maybe they've never experienced it

[Gimme in reply to Zappata]

Well, I don't believe that I was actually depressed at the time, as far as I remember. Sure I was fed up, which is understandable, but I was just in so much pain that I just couldn't cope with the basics in self care. I think the asthma nurse asking me to stand up and not being able to was what precipitated the tears. I was intrigued that she thought I was depressed, rather than picking up that there might be an underlying physical cause. I wonder how many illnesses get overlooked because of that assumption. Then again, it is the old problem of having an invisible disability.

[Zappata]

Pain, that is

[phebamom]

I am in US. Misdiagnosed at large university. Changed to doctors in different city. They sent my biopsy and myself to Mayo in Rochester, MN. Properly diagnosed. My rheumatologist told me he meets most GCA patients for the first time in emergency after they have gone blind in one eye. Don't mess around with doctors who won't take this very serious.

[LocalHero42]

Rob Hughes is both open minded and brilliant, he diagnosed my PMR instantly, confirmed after 2 weeks on Pred, this after 18 months with GP and hospital tests.