Fuming!

[loopeyloo72]

I am absolutely fuming!

Brief background: Diagnosed with PMR in June 2017 and prescribed 15 mg Prednisolone plus Adcal D3. Had tender, swollen vein in left temple but did not realise significance at time. Having found this site, had confidence to question doctor when told to reduce from 15 to 10 mg and reduced to 12.5 instead. Using DSNS method, I then tried to reach 10 mg but found that when I was taking more 10 than 11 the symptoms returned. On the second occasion at the beginning of December, I increased back to 12.5 mg on the advice of my surgery. On the Friday before Christmas, late in the evening, I felt something move across my head and then lost all vision, albeit temporarily. It was as though someone had switched the lights off and then put them back on again. As you can imagine, it frightened the life out of me. With hindsight I should have done something about it at the time.

Yesterday I saw the Rheumatologist and explained all this to her saying that I had stayed on 12.5 mg because I had had pain in my left temple, pressure behind my left eye and occasional confusion. I might have well been speaking Chinese! She was more concerned with the fact that I was still on 12.5 mg Pred after seven months and wanted to prescribe Methotrexate. After seven months?!! She also strongly recommends that I take AA even though I only have osteopenia - another drug I have refused to take. She actually stated that she didn't think my loss of vision had anything to do with my PMR but could not offer an explanation as to what had caused it.

My blood pressure was probably through the roof by then but I don't know because they didn't bother to take it!

[DorsetLady PMRGCAuk volunteer]

Oh, good heavens to wonder you are fuming..what a disgraceful attitude from a professional.

The sight phenomenon may not be anything to do with PMR, but she really should have sparked and insisted on further tests at least to rule it out.

If I were you I’d be doing the following - making an appointment with local optician/optometrist soon as possible (quering GCA); making appointment with GP requesting blood tests - to see if raised; monitoring your sight, and hot footing it to A&E if anything like that occurs again; and staying on current level of Pred until you’ve got some answers.

Good luck.

[loopeyloo72 in reply to DorsetLady]

Thanks, DorsetLady.

I hadn't thought of visiting the opticians but that is good advice. I will be writing to my GP asking to be referred to another hospital as I have no faith in this rheumatologist whatsoever. I am due to see my GP at the end of the month anyway and will definitely be hot-footing it to the dreaded A & E queues should it occur again!

[PMRpro Ambassador in reply to loopeyloo72]

Where do you live?

And IF this does turn out to be an escalation of the PMR to GCA - I do hope you will put in a complaint about that appalling doctor.

However - if you EVER have similar vision problems dial 999 if you don't have someone who can take you to hospital. Transient loss of vision like that can also be a sign of a stroke and needs to be checked out. It may only be TIA, a transient ischaemic attack, where it all resolves in 24 hours - but they are almost always a warning of a direction in which something wrong is heading. And if it were a stroke - you don't want to be driving at the time.

[HeronNS in reply to loopeyloo72]

With those symptoms you should be triaged to the top of the list and not have to wait in a lengthy queue - my ophthalmologist says a GCA loss of vision should be treated as seriously as a heart attack or stroke.

[PMRpro Ambassador in reply to HeronNS]

The advantage (in the UK) of calling 999 and quoting loss of vision. It would be triaged by the paramedic as query TIA - and if they left you at home and then you went blind there would be a lot of questions asked.

[HeronNS in reply to PMRpro]

I imagine it would be same here. One thing we still have is an excellent 911 service, although it isn't free.

[PMRpro Ambassador in reply to HeronNS]

It is here as long as you are an emergency/injured. And the White Cross provide a taxi service for you if you are a member. Unfortunately, in the UK, half of the 999 service's problems are due to not charging...

[HeronNS in reply to PMRpro]

My ambulance trip (broken leg) was covered by our health care plan, which also paid for my crutches and splint. Which we later donated to the hospital to pass on to someone who didn't have extra coverage.

[PMRpro Ambassador in reply to HeronNS]

I was asked to pay a 20 euro deposit for my crutches - which I would have had returned to me if I took them back together with the receipt. I chose to keep them - never know when you might need them!!! I had to make my way to the hospital to collect them since OH was abroad and I was on my own. For the sake of 20 euros - never again!!!

[HeronNS in reply to PMRpro]

My husband tried to say we should keep them in case we ever needed them again, but I didn't want the reminder. Having got through about 66 years without ever needing crutches or any kind of cast or splint I hoped that I would never need them again. We can always buy them again if needed. There, that's one case of my not keeping something for my kids to have to dispose of.

[Sandradsn]

I'm fuming for you!I was told 2years ago when I started this crazy journey that any problems with vision or temple pain to go straight to A&E.

[loopeyloo72 in reply to Sandradsn]

Rest assured, Sandradsn, should it happen again I will go straight to A & E. To be honest, I think I was in shock - and probably disbelief! And being just before Christmas, you don't want to be a nuisance either for an already over-stretched A & E.

[PMRpro Ambassador in reply to loopeyloo72]

They don't mind the genuine cases - and you would have been.

[Oldman-1]

Morning Loopy, in the UK we have the Legal right to ask for a second opinion and not to wait for it, demand it. Even a GP can be sidetracked in favour of the one you are seeing. Also in the UK, you can walk into any good Opticians like Boots and explain your symptoms requesting and urgent vision test. It`s free. In real terms, that temporary loss of vision is serious and requires urgent diagnosis. Record everything for you own sake in writing. Should anything with you health experience go wrong as a direct result of misdiagnosis, sue.

There is no mileage in you being used as human scapegoat.

[loopeyloo72 in reply to Oldman-1]

Morning Oldman-1,

Thank you for your response. I have already written to my GP requesting a transfer to another consultant and I will be contacting my optician tomorrow for an appointment, just to be on the safe side. Rest assured, I can be a stroppy bitch when necessary!

What does concern me is that without this site and the knowledge of the people on it - especially the Aunties and Uncle - I would not be questioning any of the decisions made by these so-called professionals which is very worrying.

[1602 in reply to loopeyloo72]

Your optician can be your best friend - it was my optician who did an immediate referral to an eye consultant - and it was he who diagnosed my GCA and my PMR which up to then [ 8months after initial pmr symptons ] had been missed by several GPs. Good Luck xxx

[loopeyloo72 in reply to 1602]

Thank you! I hadn't even thought of going to my opticians until DorsetLady mentioned it - but I will be on the phone to them first thing tomorrow. Will keep you all updated. Thank you everyone for being there xx

[piglette in reply to loopeyloo72]

Hi loopeyloo, my optician seemed much more knowledgable about GCA than my GP.

[GrannyReid]

That is absolutely disgraceful, loopeyloo. No wonder you were fuming. Your post has made me feel so angry. I was furious too at my treatment. I phoned NHS 24 Scotland in July with all the GCA symptoms but was treated dismissively and told to go to my GP despite the surgery being closed for three days. I suggested GCA, I said it might be a medical emergency but all this was ignored. This meant a three day wait. By the time I saw my GP my sight was coming and going in my left eye. She immediately put me on 40mg of pred and sight saved. I complained to NHS 24 and this was treated very seriously. I received a wholehearted apology, was told the person who had dealt with me was being educated in GCA and the errors made would be used as part of a training course throughout the organisation. I can only hope that lessons have indeed been learned. I now realise I should have gone straight to A&E and you shouldn’t hesitate. We really need to raise the profile of PMR/GCA as at the moment there are too many people being treated negligently by ignorant medics who should know better.

[Jocelyn344 in reply to GrannyReid]

Could not agree more. In the medical world we have a big C, (=cancer), but we are suffering the big P =(PMR) which is very misunderstood. Attempts to decrease my prednisolone dose have been unsuccessful, left me in pain. Cannot tolerate ibuprofen. Agreed that the rheumatologists have not got it right

[loopeyloo72]

Hi Granny Reid, I thoroughly agree with you that we need to raise the profile of PMR/GCA - but how? Far too many of our medical 'experts' are either ignorant or not up to date with this illness. I even contacted our local television asking them to consider a programme highlighting the condition, the medical response, etc., to no avail. Any suggestions would be most welcome!

[PMRpro Ambassador in reply to loopeyloo72]

Join the one of the charities - which have been set up in the last 12 years or so to do exactly that. They have asked questions of the government, they support research, provide info for patients to form support groups, take Road Shows around the country which inform both patients and doctors alike, and have close contacts with some of the top medics in the UK (and elsewhere) through patient representation. The NE group has a DVD for sale and a welcome pack about PMR/GCA which is sent to every new member.

If you go to this post on another PMRGCA support forum (the original, without which this one wouldn't exist either)

patient.info/forums/discuss...

you will find links to all the charities, in Scotland, the northeast and the northwest of England and this umbrella one, as well as a lot of other info about PMR/GCA. Find the one that is nearest to you - and join. This provides funds for further work and representation as well as often opportunities to do more.

Nothing comes from nothing - this forum traces its origins to 5 ladies who "met" on the patient.info forum more than 10 years ago and decided to set up a charity because then there was no info available at all in England. Scotland already had a group, granted charitable staus in 2007, and they provided advice and exertise for the NE one which was the second, having its first Newsletter in 2008 - and the reason I'm here, having worked with the NE group since the launch of their DVD, "You are not alone" in 2009. Copies of that DVD have been sent all over the world - and has been viewed by doctors and other healthcare professionals as well as patients and families, improving their knowledge of what we go through.

But it all costs money - despite the thousands of hours of time donated freely by people like DorsetLady, Celtic, SheffieldJane, Kate and me - to mention just a few names you are familiar with. Apologies to any I missed out! Memberships, grants, sponsorships and donations are all essential.

[Oldman-1]

Loopey, I`m just asking as a follow up, how you`ve been going on with your eye sight ?

[loopeyloo72 in reply to Oldman-1]

Hi Oldman-1,

Thanks for asking. Following on from Dorset Lady's suggestion to see my optician, I went to see her and she referred me to the Eye Hospital for an urgent appointment. The earliest appointment is 19 March apparently! My doctor has been trying to bring it forward to no avail - so nothing to report as yet. My blood pressure seems to be going through the roof though - medication or stress?

[PMRpro Ambassador in reply to loopeyloo72]

Your GP could send you to hospital with a letter as an emergency. Urgent is not the correct word in the NHS of today I'm afraid - though to be fair, that is a situation that has reigned for the best part of 10 years! Urgent just means sooner than routine - and can still be 12 weeks or more.

If a patient must be seen as a medical emergency then the word is "emergency" - just as if you had suffered a stroke or heart attack. Which are both parallels of what happens in GCA and the literature does call GCA a medical emergency.