So, after waiting 7 months for my NHS App , was given a cancellation app yesterday . Saw the same Cons. as I saw Privately. He had ordered muscle scans and Electrical stimulation tests, which I had. But because I didn’t know at the time when they would be, GP started me back on Pred. I was therefore a week on them when the tests came up. I did tell the testers this at the time. However Rheum said, ah results nul and void ! They were normal, apparently. Despite the results perhaps being incorrect because of the asteroids, Cons still thinks I don’t have PMR ( diagnosed in 2017 by Locum Cons) , he is a believer in the elbows to hips pain, school of thought) thinks I have osteo arthritis . Surely not hips, shoulders , hands upper arms jaws ? Morning stiffness ? Fatigue ? Steroids abolished all pain and siffness in 4 days flat. So he suggested tapering down from current 8 mg every two weeks . When I asked what to do with the pain I’ll surely have he said he would tell the GP to give me ‘ patches’ I asked what patches ? He said I’ll send you a copy of the letter 😡Honestly I loath being treated like a child and it’s me who had to live like this ! I said I had to wait 7 months to see you , so if I’m in the sand predicament when I come off the Pred , what do I do ? Says oh you won’t have to wait too long , I’ll have a word with my secretary! Ha ! I worked long enough in the NHS myself to know that Consultants say anything to get a patient out on a good ( if lying ) exit 😚 I asked could I have a Dexa scan ? Yes he said , in the fullness of time ...
Rheumatologist app: So, after waiting 7 months for... - PMRGCAuk
Rheumatologist app
Hi,
No wonder the result were skewed if you were on asteroids! Sorry, shouldn’t joke! But if you don’t laugh sometimes you’d cry!
What planet (see the connection😳) is he living on?
Patches? As you say what patches? And you won’t have to wait? No, course you won’t!
What a waste of time, only good thing is you weren’t paying this time.
What a plonker. 🤦🏻♀️
My dads GP had him on morphine patches for PMR pain! Surely a rheumy would know better?
One would hope so, but from what BB said about the whole conversation I have my doubts!
How frustrating...and how very deflating. It's bad enough waiting for an appointment long enough ...where all hope is pinned onto that one meeting in anticipation that it will be worth the wait!
I wish the NHS had a patient led rating system monitored by the CQC. I'm sure some "specialists" would actually do their job properly rather than just be physically present to take a paycheck! 😡
They don't do this because the BMA and NHS would fight against it tooth and nail , and use the usual blackmail tactics that people would leave, and their would be even more staff shortages if their members were put under these extra burdens of proving their Professional responsibility.
Very much like there tactics on getting out of having a Senior Consultant for each Specialism working one weekend a month to prevent Treatment delays and unnecessary weekend admittance because of lack of staff qualified to diagnose specific conditions over weekends.
It's such a shame that such politics are the very cause driving our healthcare system into the ground. It undermines the work of those who genuinely work to make a difference...
....and leaves the rest of us to chance our luck as to the competency of whomever we look to for diagnosis and treatment.. 😥
Ha! Apart from his model railway husband into his Telescope.. maybe the Asteroids went into my subconscious 😛the only thing is I have a reasonable stash of Pred. I could just do my own thing .. there are two big hospitals in Bristol, the one I was originally diagnosed , weight, blood pressure , bloods checked every time . A ‘ base’ Dexa prior to starting Pred, and a lovely Specialist nurse on the end of a phone should we need advice and support between appointments. The other one ( unaccountably I was referred this time around) none of this, not even a blood pressure check. 7 months wait for this 😱
Ask to be referred back over to the other Hospital because you are unsatisfied with the care you have with the current one.
You DO still have the choice in England - officially at least.
Another I hope develops "atypical" PMR and can't get a diagnosis - not that you sound to be atypical!
Is your GP any less daft?
There several GPs in my practise. While there are ( I hope ) no Harolds they are mostly,alas not very switched on . The very worst was the one who insisted I had a plain x ray of my upper arms 5 years ago when I had severe pain and how it all started. His theory was I may have broken them ... I told him it was very unlikely, since I hadn’t fallen over, been beaten up , or had any history of bone thinning disorders. The Radiologist followed instructions , thinking it odd, and declared no broken bones ! So this is what I’m dealing with 😚
OMG!!!! Spontaneous hairline fracture does seem a bit of a zebra all things considered!!!
I'm so sorry for you.
I have had enough of those appointments over the years to know how you feel , no real diagnosis , no real idea of what they are treating , mucking up your tests by leaving you on drugs that cure the issue then not retesting because the results were normal so missing what needs diagnosing, not telling you all in the office so that when the letter comes through you can't get anything sorted until the next appointment.
The worst form of NHS Hospital service and unfortunately far, far too common .
Give yourself a rest over the weekend .
Distract yourself from trying to deal with things in your mind with something you love that you can cope with doing.
You need a day off .
Pace yourself well now , no matter how frustrating virtually doing nothing is , it's the Self Care you will have to put in place to cope with any Rebound Pain and other symptoms that Pop up from enforced fast tapering.
Hopefully , the patches will give some relief , but if they do , don't try to pick up activity too quickly because of it, your body needs its energy to control the pain and deal with the changes of medication.
Wait for the letter and let us know what's in it so we can help .
The one thing I would consider querying is the fact that they haven't repeated the nerve tests and just assumed that as they were normal it is ok. They were taken while on drugs that could change the results , so they need repeating.
You can discuss this politely and firmly with the GP , or contact your Rheumy via the secretary to have these repeated , if they refuse , complain.
I had the same with an 72 HR ECG back in March , on beta blockers while being tested for a Tachycardia disorder. Luckily , my local Cardio appointment had crossed over with the other clinic tests , so I didn't cancel it.
I had , it and although the Cardio doesn't quite understand what POTS is 😮😮😨😨😬 , they have already confirmed another Tachycardia Syndrome which is part of it , and are retesting after they can get my heart rate down with the right medication to finish the proof of my Dysautonomia condition. If I had not had this repeated and chased them up for a follow up appointment rather than them just sending back instructions to the GP I would have been left out to dry again and wouldn't have been put on the right medication again !
If you want a Dexa Scan , you can again politely and firmly request it via the GP . They have the ability to send you for it , they just don't like to do it because of the expense , preferring it to come out if the Hospital budget instead. You need one , especially if they are considering that the origin of some of your Pain issues are OA . They just don't like coughing up.
But , in your case , as they are being far from proactive in helping you with treatment you need to know the basics of your Bone Health to help them establish a more thorough diagnosis.
Request politely , as for a full explanation if they refuse , politely repeat your case , another refusal , tell them that you know that this isn't acceptable and that you have tried all you can to resolve things with them but that they have given you know other option but to make a Complaint with the outside agency for the Trust. Internal Complaints are pointless.
I'm just so sorry that yet again the system is letting you down.
Another fight to come , but you can do it , and we are ready to support you how we can.
Take extra special care xx
I to have asked several time for Dexa test PMR/G CA before starting treatment been on steroids 7.5 for over a year been up to 40 for GCA tapered down to 20 2 weeks ago is it to late to ask again for DEXA ?
There is a word for a condescending consultant like this....plonker will do.
....so how does your Healthcare treatment, compare to Wisconsin, treatment? Inquiring Minds, want to know.
I have no idea what happens in Wisconsin as I have not been there in 25 years but here the NHS is really good although it depends where you live. I have excellent GPs but getting to see a specialist takes time (unless an emergency). Brexit has definitely not helped with staffing the NHS which is made up of excellent people from around the world.
Thank you, there is discussion here of Socialized Medicine.... There is travel to our best Clinics. Example: We were at Mayo (Rochester, Mn) for many months while my husband was being treated . He had the same Neuro Surgeon that treated George Harrison, (Beatle). We are not wealthy. Our Employer provided iInsurance was excellent.
My father kept asking if I would retire in America but there is no way without health insurance. At 60 you get free prescriptions here...
My co pay for a months supply of Prednisone is $7. My insurance is Medicare and Blue Cross of Michigan. I was a “stay at home” mom. My deceased husband’s insurance was provided as a retiree.
Wow that sounds very good.
I was given an appointment within 6 days with my Rheumatologist at Marshfield Clinic, Wisconsin. Put on Prednisone immediately. I had Thyroid surgery there in the past so think that is why they took me immediately. I saw him every two months. His care has been excellent. He is originally from the Middle East. My cost is minimal.
I have an under active thyroid and have never seen an endocrinologist...my GPs say I am fine (from the occasional blood test). Getting to see an rheumy took five agonizing months. I think wherever you are you have to be your own best advocate - researching illness and doctors.
...my Thyroid was growing around my Trachea, guess that is rare.
ouch.
I think if you have good insurance the US system is great. My stepmother had excellent insurance as a senior and the best of care. However the premiums were very high. It was by no means free. In Canada we have a sort of hybrid system whereby our medical appoinments and hospitalisations are "free" but many services, and this includes medication (except what they give you when an inpatient) are extra (as well as eye care, dentistry, physio and many other things) so those who can have private insurance, premiums much lower than you'd pay in the US but still significant. Most employed people get this through work and many of those people have access to a retiree plan when they retire, my husband's plan is very good. So we do have a two-tiered system here, but it's nothing like the US although the Affordable Care Act (aka Obamacare) has done something to narrow the gap.
My late husband’s insurance is provided to me as a supplement to Medicare (65 yrs). It includes eye care, prescription drugs, & dental. My GP hates Obama care and said his time is taken up with paperwork. He said it is limiting interest in young folks wanting to enter the field of Medicine.
Paperwork is the bane of both UK and Canadian systems and this is probably because the systems aren't actually set up with enough consultation with the doctors and the patients.
Obamacare limits time doctors can spend with patients. We are starting to see shortages of young Doctors especially in Rural areas. I know many Canadians come to the US for treatment, surgeries, etc.
There are no easy solutions. Medicare was introduced in Canada so no one would have to go without necessary medical care, nor be bankrupted if they got a serious illness. Pre-medicare my father was a GP in a small town in Nova Scotia. He was not infrequently paid in kind - those are what I remember of course, the wheel of cheese, the venison, and in particular a beautiful Chinese embroidery which now hangs on my wall. I think these were great gifts. I expect my father would have been more grateful for a regular source of income. Eventually he left private practice and went to work for the provincial government, setting up the emergency measures organization. Eventually he emigrated to the US and worked for a company which provided medical services to other companies - don't know what these are called, my brother in law until recently worked for one also, in IT. So we never had direct eperience from the medical side of how medicare worked. But as a patient I can tell you that until the last few years when administrators started to meddle without proper consultation with medical personnel and patients we had an excellent system in my province, I would be willling to bet in the 60 and 70s probably second to none for a jurisdiction our size in the world. Can't say that any more, and the doctors are increasingly unhappy with the way things are going. And I believe there is a worldwide shortage of physicians.
Yes, generally those with money although I think in the case of certain procedures not carried out in Canada where Canada cannot offer equivalent treatment the medicare system does pay part of the cost. Not sure about that so don't quote me!
Thank you for that information. We also have a Medicaid program for low income folks here in the US. My local hospital will give care to anyone. It is a Catholic Hospital. I know Mayo Clinic,Rochester, Mn., recently improved their local Airport, so now it is considered International. The King of Saudi Arabia, President Bush, George Harrison......as well as my husband, was treated there. No discrimination as to station in life.
I have lidocaine patches for a deep muscle pain related to my vertebral fractures, I tried one on my shoulder pain, which I think is PMR/GCA related, and it had no effect at all. They do help a little with the back pain, though at 3.50 pounds each I don't think I would pay for them!
Really feel for you.
I was diagnosed initially with osteoarthritis and given naproxen and omeprazole . I asked the doctor at the time are there any tests to confirm this and she said “I don’t need to, I know what it is”.
A younger and better lady doctor a year later had other suspicions.
After test, bloods etc confirm PMR GCA LVV.
My consultant told doctor to put me on 40 mg pred immediately and stop naproxen.
Naproxen didn’t give pain relief.
. Prednisolone gave full pain relief by the end of that day. Miracle!
I was told that I would not have had that pain relief, if it wasn’t PMR etc.
Ultrasound and PET scans confirmed this
You need a new doctor and print some information for them to read.
Good luck
P.S What were and are your blood CRP ESR levels?
"I don’t need to [test], I know what it is”.
These doctors who know it all, through skin too! A rheumy told me I had OA in my knees. that was what was causing the pain, she could "feel it". Didn't account for the hand pain though. Some 13 years later I had similar knee pain, made going down steps awful. So here the GP sent me for an x-ray. No sign whatsoever of any OA. It is PMR - was then, is now. Pred sorts it.
I have lost a LOT of faith in doctors since this and things other members of my family have also said.
Seems you have to disbelieve their diagnosis, check things out yourself and fight for your health. Not great.
I never did have blind faith in doctors - went to med school for a time too, worked in the NHS, OH also worked in the NHS, seen them at all levels and like everything else there are good, bad and ugly ones. Knowing your illness to the best of your ability is important - and above all, trying to recognise how your actions impact on your illness, in every way.
I agree with this totally.
I'm a retired doctor and was recently diagnosed with PMR. I had to point my GP in the right direction, but he was good. I'm not sure what the patches are that you were prescribed but if they are any form of opiate, like morphine, I'd avoid them like the plague. When I was at medical school in the early 70's we were taught that opiates should never be prescribed long-term for chronic pain (chronic means long-lasting, not severe), as they rarely give long-term relief and the risk of addiction is too high.
If you can get referred elsewhere, I'd suggest you go for it. At the very least you need a doctor you have faith in.
About the only positive you can see here is that if it is PMR then the man's "patches", whatever they are, almost certainly will do nothing!
5 years before diagnosis, after being in increasing pain for several years, Butrans patches did not touch the pain. Eventually, when I got a diagnosis of GCA and PMR, steroids killed all pain in 4 days.
It took months for my GP to diagnose PMR. Only then after a locum did extra blood tests and sent me for physio. The physio told me within 10 minutes that he couldn't help me and to go back to my GP. They then gave me Prednisolone 15 mg and referred me to a consultant and told me it would be 12 weeks. 9 months later my appointment came through, I had been taking prednisolone all this time. The GP then told me 1 week before my appointment to STOP taking them so the consultant could see my symptoms better. I of course ignored her as you cannot just stop them.
Consultant agreed it was PMR,sent me for a scan. Appointment took 2 months and then I was told the result would take 4 weeks. That was 5 months ago,and I am still waiting. Receptionist at my surgery said,No news is good news when I complained about the wait. I have not been seen by anyone else in the meantime,but have reduced my dosage every 3 weeks. Nobody seems to know enough about this.
I think you have probably been particularly unlucky - your GP is obviously utterly ignorant of a lot of things and I would make an official complaint, particularly about telling a patient to stop pred after months on 15mg! I say this because I had an almost equally hopeless GP - had I not stuck with him but done a tour of the other GPs at the practice I wouldn't have had 5 years undiagnosed!
I think every GP in the UK should be emailed .
Brief 5 points on PMR GCA to consider with patients.
Age bloods etc
It would surely save us all pain and the NHS money in the long run.
Honestly, it just continues to amaze me, how “ normal” illness’s and disease’s continue to be missed in this day and age! PMR is not some rare syndrome, and yet it can take ages to be diagnosed much less treated. My original Rheumatologist diagnosed , treated, happy days. But when I had a bad flare weeks later, I had to be re referred to a different one who disagreed with the first. My big worry now is, that on Friday, he said I had to come off Pred tapering every two weeks. Honestly I’m terrified I will be in the same situation not being able to shift! When I was younger I had Endometriosis, not diagnosed for 10 years !! Was given all sorts of junk for ‘ irritable bowel syndrome’ . It’s actually disgraceful that I read this is still happening to young women 30 years later. Still, that’s another problem ...
Agree 1000%
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