The saga continues. Thank you to anyone who takes the time to read my never ending story. I am feeling so fed up with my 7 year PMR journey. Three major flares and now another one. I have been struggling to taper over the past six months. Doing DSNS at 1/2 mg every two months from 12.5. My CRP and ESR were mildly elevated so I continued. Pain and fatigue but I also have osteoarthritis and bursitis. On Monday my GP called to say my CRP had spiked to 78 and ESR to 39. I had been feeling awful for a few days, GCA symptoms but I have had those before and had a negative US. I was convinced I had it this time. So the GP told me to go to A&E and ask for GCA assessment. That’s when the nightmare got worse! We had to wait in an open tent in 5 degrees for 30 minutes. Then I was taken into a doorway (I am not kidding) for triage. I was told I should not have come, that they couldn’t do a biopsy. Of course I said I was not there for a biopsy but it was a medical emergency and my GP had sent me for assessment. No, go home and ask your GP for a Rheumatology referral. I have a rheumatologist but it was out of hours. They just wanted me to go away. They had 150 patients waiting to be seen. It was like purgatory, people everywhere, sitting on the floor, in the corridors. I left and emailed my rheumatology hot line the following morning and was told to take 20 mg if my blood sugar was normal and apt made for an US the day after. In the meantime. You may remember that I have a mystery rash on my breasts. I had a dermatology apt the next day for which I had waited six months so I went. The consensus is that it’s Livitigo Reticularis, associated with many autoimmune conditions. Two of the vasculitis blood tests were mildly elevated so they have repeated them. These were done in April and I was not notified. The next day I dragged myself to the rheumatologist, a “non speaker”, with very poor people skills but good at doing tests and trained in the Doppler test, which was negative. He thinks it’s still chronic PMR. He has put me on Azathioprine 50 mg. At first he wanted me to stay on 11mg Pred but I stressed how bad I felt and my high CRP so he has put me on 20 for a month then reduce by 2.5 per month. He did about 20 blood tests. He said a PET CT scan would not show anything as I had been on a high dose of prednisolone for so long. He agreed to do it if I can reduce to 5mg. He denied Actemra as the test for GCA was negative. So that’s it. Thank you so much for reading, it helps to just write it down. I am trying to be positive about the DMARD. Previously he had refused because my liver enzymes are elevated from fatty liver, but they haven’t changed in 10 years. I have steroid induced Diabetes 2 and I am due for my second cataract in a couple of weeks but I think I will cancel that. Any thoughts would be so helpful.
Seven year saga. : The saga continues. Thank you to... - PMRGCAuk
Your elevated CRP and ESR could be caused by the rash you spoke of. Mine gets elevated by the inflammation in my spine. Hopefully they can clear it up for you and you will feel better.
The experience you’ve gone through at A&E doesn’t help the stress causing you to feel so bad on top of it all.
More experienced people will be along with even better advice for you. So sorry you are not well. Take care.
Thanks. I have had the rash 1 8 months since my last flare. It took this long to see a dermatologist and get a biopsy and follow up apt. I dontbthinkmitvwill clear up but as it just looks scary and ugly I guess that’s not really relevant, not showing them much at 75 🤣
Like many others, I read your story and really empathise, although your story is particularly harsh, punctuated by neglect and limited understanding. It concerns me that your ultrasound was “ negative and let’s move on” they are by no means infallible. My GCA/LVV was found by chance nestling in my left armpit. This was the open sesame for Actemra and various other scans and tests. I would be wanting a more diligent Rheumatologist, a second opinion. Where in the country are you? We may be able to recommend a consultant who is more switched on to our conditions. In the meantime, deep breath, regroup, the fight must continue. X
Thank you Sheffield Jane. I am located in Northamptonshire. He did do the armpits and showed me the screen shot. I went through a similar thing about 18 months ago and had the same symptoms explained away by TMJ, osteoarthritis in the top of the spine, fuzzy vision from dips in the retina, earache from the jaw, all feasible and intermittent. Sometimes I think I have had GCA since then but on enough Pred to keep it at bay.
A bit rough - but they do have to put people somewhere to triage them and there is no room in a lot of EDs. Your GP needs to learn the purpose of the ED - it is to keep you alive to wait for the relevant department to assess you. If he was sending you there, it should have been with a letter pressed into your sweaty little hand and after a phone call to the rheumy department saying you were on your way. And told to take 60mg pred in the meantime just in case it was GCA. There really was not a lot the ED would be able to do. Many hospitals don't have the equipment and you already knew the CRP and ESR were raised which is the limit of what they could do at night or at the weekend.
But HE personally didn't deny Actemra - the funding process denied it.
Thanks that is what the A&E said but I was under the miscomprehension that we should take ourselves straight to there if we suspected GCA . I see my GP on Monday. She is new to me bacause my GP retired but seems very knowledgeable about PMR.
Under normal circumstances yes - but the EDs in the UK at present are overwhelmed so a referral letter is very useful. It isn't any point going to the ED at night or weekends even if GCA is suspected, all they can do that is relevant is the blood tests, they have no access to anything else, hence the instruction to take high dose pred and be seen by a rheumy asap. You had your raised markers and had spoken to a GP. It is a dreadful state of affairs - much of what the charity has achieved is half-way down the drain.
My GP also advised me if I suspect having GCA I have to rush to A&E and not to GPs surgery.
I think the protocol is going to have to change. When I told my rheumatologist what had happened he said their ER was in a terrible state, so to first. Call my GP, then the rheumatologist, if out of hours call 111. If there is loss of sight it’s more simple if there is an eye emergency dept.
Oh.. flippin' Nora .. or similar expletives...what a nightmare indeed.
Well hopefully the 20mg will make you feel better initially,
For once think GP was correct in sending you to A&E but he maybe could have been a bit more proactive by writing something for you to present on arrival stressing the urgency. Whether it would of helped or not, who knows.
Can't really blame the rheumy, if GCA is not proven you are unlikely to get Actemra, but could be more helpful perhaps... and as said, maybe worth considering another one..
As for cataract operation, totally your choice of course, maybe give it another week to consider...you may feel a bit better in yourself by then, and if you cancel you cannot be sure when you'll be offered another.
what is frightening is that you are deemed an emergency. Anyone with a chronic problem or needing new hips or knees, does not stand a hope in hell. I suppose all the medics will be moving over to the private sector!
Totally agree with your last sentence ….
Although do have to commend my NHS shoulder surgeon. As I’ve said before, replacement done just before covid lockdown -Feb 2020 -so no 6 weeks follow up appointment, no physio -only what I found online.
Shoulder itself it fine (great in fact) , but tricep muscle not as good as should be, so earlier this years asked to see records as to what he’d done -vaguely recall in post op haze he’d said something to the effect “I’ve tweaked your rotator cuff”….
Well got appointment within a couple of weeks, many apologies about covid lockdowns & issues caused, long chat -happy with strength, movement -gave me some more exercises.
Thought that was that, but 6 months later another appointment to check progress -and suggested X-ray just to make sure. Telephone appointment yesterday -all perfect -but will keep me on an “open-ended” appointment basis in case it doesn’t improve any more or deteriorates.
If that’s the case, very impressed -but of course it may all change when he retires -but doubt I’ll still be around then 😳
It is strange how variable hospitals are around the country. One does wonder if it is due to good and bad management. I suppose it is easier to blame the government.
It is easy to blame government -and yes, like in most places, there is good and bad management…. and although Dorset has an abundance of older inhabitants with their ailments and a wide rural catchment area, maybe not the stresses of inner city hospitals. Can’t fault our local one -in respect of both late hubby..and my treatment.
I am a big proponent of the NHS, in fact I trained at this hospital and have always had good care. But this experience was third world, my husband and I were shell shocked. In fact that night on the local news the manager apologised about sick people waiting in 5 degree weather and said that the tent had been put up to shelter people from the sun. They are now bringing in a temporary building. So someone had dropped the ball and they must have had complaints. My rheumatologist said the usual protocol is for suspective GCA patients to be assessed but the A&E is in a terrible state. I think it’s caused a lot by poor access to GP services. Although my little country surgery is wonderful.
My daughter is in the ED - she says it is awful, relentless, and they aren't even a major trauma centre. She says she hears "I couldn't get to see my GP" time after time - and by the time they get to her, they are "proper poorly" and even "BIG sick" (both technical terms )
She went back after having Covid but had a massive asthma attack as she got to the door. Not even room for her - but was rescued by a couple of paramedic colleagues who put her on nebs until there was. And she was promptly sent home for 2 weeks to recover properly - but that left them one down that day and an extra patient.
I feel so bad for those nurses, stuck in a vicious cycle, cant get the well patients discharged to make room for the sick. I did my RN training in the 60s and there is no comparison because we were trained by throwing us into the lions den, but we gave wonderful care and weren’t brought down by all the sad stories.
To be honest - I think training back then was better in so many ways and brought in a lot of people who were terrific nurses without needing to do a degree. I have helped the grandson with the language and coherence of some of his essays for nursing - OMG, no way I could have done that stuff!! The ED daughter isn't a nurse, like me she isn't nurse material. But she has done a degree and 2 MScs, one she paid herself, to get where she is. Nursing should be an apprentice training - to use the modern parlance. Like it used to be, learning by doing. The nurse daughter works in endoscopy, surrounded by nurses who qualified having never worked on a ward and totally out of their depth when they were sent to a ward instead of an OP unit.
I really agree about the apprentice training. I taught paediatric nursing at University and they do need good A levels for the theory but the hardest part was getting them practical experience. This was in the USA. I don’t know what it’s like here but I had to beg, borrow and steal to get them their one twelve hour shift a week. Then the nurses were too busy to teach and my clinical instructors stretched. Not to mention the students too scared to touch the patient! A three month stint is much more effective. When I trained we learned by experience, very hard, two students at night with 40 bed wards but I don’t think we killed too many people!
My grandson did a lot of practical placements - he was one of the babies thrown to the Covid lion! But they weren't a good mix - he was very experienced at looking after orthopaedic patients who mostly aren't "sick" but need heaving around - and he's a strapping lad! One day a week is useless - they don't know what's where or why and have forgotten what they'd gt their heads around by the next week.
Don't know about the USA but the UK looks down on the apprentice system - whereas here they are the backbone of a lot of professions and recognised at such. Nothing wrong with technical and manual skills - and nursing has both. One problem you get with degree qualified people is they think they are too good to do menial things. Nat's colleagues kept telling her she didn't need to do bed baths, leave them to the HCAs - whereas she saw them as the perfect opportunity to assess a patient's mental and physical status - she never missed pressure points and ulcers ...
I too trained in the sixties, we also had SEN trained nurses and also Auxiliaries, then the Salmon Report came out and everything changed. Like you said Uni nurses come on the ward’s now with very little practical experience thinking they are mini doctors and doing a bedpan round is beneath them.
I don’t think the majority of them are like that. They are basically kind and empathetic but haven’t had the training to give holistic care…..and some don’t know how to make a bed or give a bedpan🥴 although they should!
I agree. You don’t need a degree to be a good nurse. My niece manages five London hospitals. She hardly gets a chance to do her job because she doesn’t have the number of consultants and nurses she should have and is constantly called upon to cover for colleagues who are ill or stressed. At this rate she will be one of them. And to top it all she has to supervise young doctors in a way she didn’t have to in the past because their training and hours on the ward have been reduced. Sorry for rant. I feel for her, for the NHS and us the patients.
I have to confess to being scared to come home - even for a visit. And so are my daughters. One is off to London for her 40th and I expressed a degree of peevedness she had not invited me, I hate London but I'd have gone for a family celebration as she has planned. Her response? "You don't want to come HERE!" This is the daughter who a year ago was keen I should return now I'm alone. Probably most scared I'd get stuck with all the strikes!!!!!!
It’s such a complete collapse, the result of years of mismanagement. Find joy where you can!
It seems Devon and Cornwall are areas where there are major problems. One lady fell and broke her hip and waited fourteen hours for an ambulance then another twenty six hours to get into A&E. bbc.co.uk/news/health-63808516
Yes it is bad there.....problems getting and retaining staff... ridiculous house prices but normal, or below national pay....
I must admit, I did think the BBC story was not normal. It does sound rather unbelievable. I dislocated my hip after hip replacement surgery and had to wait for around five hour for them to get a surgeon, his team and an operating theatre for me. Luckily I was already in hospital (a private ine!) I still shudder thinking about it. Presumably the lady in Cornwall must have waited two days.
Actually Devon & Cornwall were bad even before Covid…..even worse since then with more people relocating from more urban areas…with cash to splash. As I said housing bonkers….and that has a knock on effect on rentals etc. Can remember few years ago NHS trusts were so desperate for staff they were paying a substantial amount of the rental costs, just to attract people..whether that still happens now or not don’t know.
Cornwall is a nightmare anyway and Devon isn't much better - long drive times along narrow roads so any waits at an ED mean an ambulance can be off the road for 4 or 5 hours anyway even if they just scoop and run and the ED isn't overrun. And only one helicopter - don't know if the Duchess of Cornwall flies at night.
There is a nice story about a GP in Horsham, who actually lives in Cornwall. Not much chance of a face to face with her! digitaleditions.telegraph.c...
Very handy for a physical examination ... Appalling. Surprised her colleagues accept it - or do they get mates rates for their jolly holidays?
Cornwall air ambulance on call 19 hours a day….
Oh right - night flying ...
yes same type of helicopter as Dorset & Somerset AA..
I saw Camilla "launching" it - hadn't clocked it was that fancy but I suppose in 2020 that was likely.
Same year as DSAA got their new one -Pegasus & yellow- both got all the gizmos -but as they are both over rough terrain and even rougher seas required. I often see both of them over village as only 5 miles from Dorset County Hospital.
my favourite GP has retired early and is doing “odd jobs”.
It seems a lot of GPs have done the same thing.
Think how many of them are our age - I'd be retired too!
I think quite a lot are in their fifties. My GP in his forties is on nearly £200k a year, so they can afford to take early retirement.
That does also have to pay salaries of his practice staff ...
No that is his salary. All he pays is tax on that.
Hmmm - seems a tad OTT ...
OTT is definitely the word for it. He says he works 16 hours a day, I am not sure doing what!
Some do - but they see patients to create their paperwork ...
I am not sure he sees patients as he is never there. Working From Home was a godsend to him! He is the most laid back person I have ever come across.
I’m in about the 7 year area too . Just going through a little angst about the onset of GCA. Have been considering what I will do if I get more symptoms of it . In my area in NZ we have a major shortage of GP’s . I wait 3 weeks for an appointment . In 3 weeks time my GP and her Dr partner are heading back to Holland . The wait then will be ???? My only option will be hospital . Same scenario as in England there. I am prepared to ‘go’ naturally , no help, if I have to, but I am not prepared to lose my sight without fighting for medical help . I have a plan . Hope my symptoms settle down or I am prepared to b naughty .
oh Flutterbless57. I know just what you mean. I am awake in the early hours in the UK with a horrible headache. Some of the symptoms have lessened in the 20 mg, such as jaw and head tenderness but I have developed a terrible cold, cough, cough, cough, neg COVID. Uncertainty is one of the hardest states to be in psychologically. I am glad you have a plan. Luckily along the years I have a good stash of pred and I won’t hesitate to use them. Hope things settle down for you.
The negative LFT may not be reliable - my daughter had 3 negative before getting a different batch and comparing: a positive from the new batch, negative from the other on day 4.
Hello Nightingales - Goodness what a debacle ! but it seems health 'systems' almost everywhere seem to be operating very poorly - for all the reasons we constantly hear ! Australia has similar issues with ambulance 'ramping' and longer waitlists for lots of ops and procedures. However, it is not quite as bad as in the UK I am reckoning (from a database of one here) as it is possible to get some attention locally - where I live - if you really need it. I live in a small regional city (pop around 30K ) while our next nearest and only major city on the OZ west coast - Perth has several large hospitals - public and private - a 500km trip however). In our regional city of Albany we have a small but relatively 'new' hospital - and a trip to A & E a few months ago with strange vertigo (gone now) elicited a very quick and professional response. Similarly my partner had a serious gut problem and they reacted very promptly with tests and admission for a few days - also seems OK now). Anyway such comparisons may be no help to you of course - but I can offer some 'empathic' thoughts.
I am almost at the 6th year of my PMR/GCA - and 'over it' as I know you are. I expected an 'earlier' disappearance or remission at least of this rotten illness - but have had multiple 'flares' and re-emergences whenever I tried reducing Pred below 10mg. I also now take 10mg methotrexate once a week - think that has made little difference however. But one hopeful LIGHTBULB recently - I have very determinedly cut sugar from my diet and am eating very low carbs in an 'anti-inflammatory' type diet. Amazingly my fatigue (one of the worst aspects for me) has diminished dramatically and I am feeling much better generally. So altho not yet a complete accolyte of the 'Keto crowd' (waiting to see more) I think this is really helping. Not implying this is the only or even most salient factor but I am going to try to reduce my dose again slowly - thinking also a lower body weight (its happening as well) might assist this. I am really also enjoying NOT having BRAIN FOG - I hated that !!
Perhaps none of this is your immediate 'cup of tea' but I do you have some relief soon from all the difficult things you have had to deal with recently !
Best Wishes Rimmy
Thanks Rimmy. I woukd rather you didn’t have the experience to empathise but it does help to know people are in the same situation. I think tapering set this off although I did a very dead slow nearly stop of 1/2 mg.. I am on a low carb diet as I have steroid induced diabetes. But I have been slipping a little with a palm full of rice with my curry. I must regain my discipline. But I am not totally convinced as my PMR still has me on a rollercoaster after 6 years on the diet. It does help the DM though. Best wishes to you too
I am in the same time frame as you. Your whole scenario sounds awful and very stressful. Do hope you get more joy when you see your own GP. Keep us informed 💐
so sorry you are going through this. Sounds a nightmare! Your story is very similar to mine. I am a retired nurse too. Had PMR for 6 years when developed crushing fatigue, hoarseness (especially when tired) and intermittent dry cough. I never had a positive biopsy ( both sides eventually done), not ultrasound, however inflammatory markers high. My rheumatologist does listen and is thoughtful tho. After ruling out various other reasons for markers (infection etc) in to high dose Pred I went as we both agreed it was likely large vessel GCA (LVV). Sure enough, symptoms resolved. Eventually I got stuck at 20mg and was lucky enough to be put on Actemra. Have been on that 3 years now (am in the States) and been able to come off Pred. I did come off Actemra after 2 years, however developed symptoms and markers went up again after about 3 months, so right back on it with a short run of Pred to bridge. Unfortunately I may be a “lifer” with these diseases. Time will tell.
My advice is to get another rheumatologist. Just the fact you’ve had PMR so long makes you high risk for GCA. Good luck!
Is there any proof that long term PMR increases the risk for GCA?
good question, that would be a good study. I was just pointing out that PMR is a risk factor for GCA.
Such a shame, what an awful experience for you.Our poor NHS is broken ,just can't see a way out of it . Dorset has it's problems, but not like you have just gone through. Hope you get some answers.🌹
Why cancel the cataract? ; you still need to see. The surgery is so superficial- unless ophthalmologist advises against.
At the moment I can’t seem to cope. Very well. Getting doddery. Also need to talk to eye dept about increase on pred and addition of DMARD. It’s resolved beautifully. The eye dept were so organised. I have three months grace and can go back on fast track when I am ready. Also, my last cataract op failed, vision worse so I am more cautious.