Been to see my GP this morning. Back in September last year a different GP diagnosed me with PMR and possible GCA. I’ve been on 30mg pred most of the time since then. I asked to be referred to a rheumatologist and was told that wasn’t needed. Back in Jan saw a different GP and he referred me. Saw him again today to be told that the Rheumatologist is retiring and there won’t be a replacement. The Rheumatologist had looked over my case and emailed, saying I don’t have PMR or GCA as I’m only 51. So it’s been decided that I am to come off pred, reduction of 5mg every 3 days.
I’m so happy to be coming off pred, but I’m so angry. The side effects of pred have been diabetics, and also Cushing syndrome.
I seriously can’t believe that I’ve been diagnosed via email!!
I just hope that the symptoms don’t come back as I’m feeling ill enough as it is
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Dee02
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No wonder you’re “disappointed”- I could think of a lot stronger words!
The original GP thought you had GCA presumably from your symptoms - but obviously didn’t have enough knowledge to set you on a sensible tapering plan - you should only have been on 30mg for 4-6 weeks unless there was a problem. Perhaps he wasn’t 100% sure on the GCA as 40mg is usual starting dose.
As for Rheumy, probably good job he’s retiring - you are not too young, certainly on the young side - but that’s not the same thing.
What dose are you on now? If you are reducing 5mg every 3 days you need to be aware that your adrenals may struggle - what advice have you been give by GP if you have problems in that area? And what are they intending to do once you are off the Pred?
Is there any way you can get a private appointment with a new Rheumy, even if it means going out of your immediate area?
I asked the GP what if the symptoms come back and he said we will treat you with painkillers!! I did tell him how disappointed I am in the care or lack of. I was put on pred and left!
I am really not looking forward to the next couple of weeks. If the symptoms come back I will be going privately
I feel your pain and anger with the lack of professionalism you have been exposed to. One word of warning is that private may be the same, after all it's the same doctors just doing a bit on the side. My private consultant appeared to diagnose from noted not from the human in front of him.
You replied to me, but think you meant to reply to Dee02 - but it will still be seen.
I know consultants do both private and NHS, but Dee as can’t get an appointment locally - she may be able to get a private one out of area.
Hi dee02, oh dear where to start I have just had a quick look at your profile and initial post. The fact that the optician referred you us the most telling for me... They don't do this lightly and must have been convinced on symptoms and his observation. 30mg is neither here nor there for gca, its neither adressi g the inflammation fully but giving you a high dose to deal with. I know you have posted a couple of time, but have your symptoms ever been bettrr? You must try and get a satisfactory diagnosis. We have mrmber(s) in their 40s and 50s with gca and pmr so that rheumy us well behind the times. You really nerd to know what is going on. I would be contacting the practice manager with a complaint. I realise the diabetes etc won't be helping, but metformin should be helpu g and if not there are other meds that can. IF you have visual, jaw and temple symtoms then a and e immediately. Do not let then bully or or push you by email! You need to see someone that can sort it.
Re the pred. I know you are desperate to get off but if symptoms persist then don't until confirm further investigation. I wouldn't go any faster than 5mg every 2 weeks to 15 then 1mg a month thereafter. Or a variation of that. The 10 per cent rule applies at 10mg and the you really must slow to ensure that after all these months your adrenals can slowly come around. But please take care and make a formal complaint if necessary. I will try and gave a read of your previous messages to get a better sense of what's been happening as it developed. Hopefully others will be along in the next day to help. 🌻
I’m not surprised! No this won’t do on many fronts. For a GP to have left you so long on 30mg because they didn’t feel able to manage you correctly, is not good enough. Then for a Rheumatologist to change your diagnosis remotely on the basis of age is poor, especially when various guidelines do not support their assumption. Reducing at that speed will probably cause relentless withdrawal symptoms unless you’re lucky. I sincerely hope they gave you specific guidance about adrenal insufficiency so you avoid a life threatening adrenal crisis when you get into single figures.
I’ve had a couple of smart arses blithely say I was misdiagnosed over a year down the line after starting at 60mg and having my life exploded at the age of 54. I knew they were wrong but my shock and anger was because of the way they delivered their opinion with no apology or even care. Well thanks Sherlock, are you going to help me get my career back and my wasted body?
So this rant doesn’t get you anywhere except perhaps making you feel a bit more vindicated. You are left in open water. If it were me, I’d start to collect papers to present to the GP and in the light of that and the lack of specialists I’d come to an agreement about a sensible reduction plan. Even IF you don’t have these conditions your adrenal system will be well shut down. I would also start documenting this sorry tale.
Did the Pred help your symptoms and what do you mean by “most of the time” with your 30mg?
Ok, so how long after the reduction did the symptoms show up and what were they? Presumably you’ve said the symptoms came back on reduction? Is the GP of the same opinion that you are too young or are they just blindly following the ‘expert’?
I am often aghast by pmr members getting the run around, but when gca is suspected and messed up, and then an email (non) diagnosis is made by someone either incompetent or demob happy, it is criminal.
You need a good Rheumatologist and as soon as possible. The GCA needs to be confirmed or not by a Consultant who knows what they are doing.
If it is GCA, as you know, your sight could be affected and this needs to be determined.
The age range for both PMR and GCA in the guidelines is 50 onwards. This does not mean that people cannot get either if they are below 50. Documented cases have been as low as 22.
Your current medics are useless, as far as I am concerned. Bit harsh, I know, but...........GCA is not ever to be played around with by anybody.
I live in Wrexham, it’s a nightmare. My son lives in Manchester, so believe me any symptoms and I will be over there staying with him!! And go to A&E there
Any chance you can go to Bristol (just over two hours by car) if so they have a very good rheumatology dept, one of the best for GCA and PMR?
Otherwise if you are going to your Sons - Dr Vinodh Devakumar, Consultant Physician and Rheumatologist at Pennine MSK Partnership Ltd. & The Royal Oldham Hospital, and before this group closed he was patron of the PMR/GCA North West Support Group.
Please if you lose sight for one second or blurry eyes............off to the nearest A&E and yell like there was no tomorrow.
Bristol may have some good rheumatologists. but I saw one there ((privately but he also does NHS) who looking back seems to have got his info about PMR from a textbook that had fallen out of a skip. But there is a good one in Bath recommended here some months ago, who turned my life around
That is a surprise to me, over the years they helped the PMR GCA UK South West Support Group , in fact there is a meeting of this group this Month in Bristol, you could contact them and ask about the Rheumatologists.
Our situation in N.Wales is an absolute nightmare , they don't just have a severe shortage of Rheumatology Senior Consultants from my soul destroying Cardio appointment last Friday I was told they are now down to one Senior , with three members beneath them for the entire North Wales Trust area.
Nobody seems to be getting appointments to be seen as a new patient for many conditions. If you are already on the books you may get a catch up with a Junior Registrar. All the new patients I know personally , for anything other than severe RA , are having there cases looked over and then are being bumped on for tests by other Departments if they think it's warranted without even speaking to the Patient by phone , let alone seeing them. It's all being conducted by email or letter without an appointment . This is unacceptable in cases like yours because obviously the Consultant and colleagues will only base their decisions on the guidelines they are up to date with and your GPs letters and not on your Clinic Presentation , Description of Symptoms or Proper Knowledge.
You may or may not have GCA , your treatment either way wasn't fit for purpose , but you aren't really going to know if this Rheumatologist has assessed your case properly , and you can't really have faith in what you have been requested to do ( or in the treatment you have had so far ) until you have been properly examined by a Specialist.
Moreover , if this isn't GCA or PMR, it is definitely something. It is only by a proper Consultation that you can find out what that is and be given appropriate treatment to replace what you have now , and help you cope with Tapering off Steroids in a way that will not make your accompanying problems like the Diabetes worse.
The only way you will be able to do this in the time frame you need to work within under the current system in the North Wales area is to get a private Consultation if you can afford to do it.
Bristol is a huge hike for us up in North Wales , although travel may be easier from Wrexham , but I would seriously suggest you consider making an appointment with one of the North West Rheumatologists that also work privately as soon as you can.
If you can get to see one with a GCA/ PMR Specialism but also with good knowledge of other Conditions this would be of most benefit to you , just in case they do rule out GCA but you have another Chronic Condition that needs diagnosing .
It is disgusting that we are being put in this situation but it is as it is .
You could complain , and should after your diagnosis and treatment has been resolved , but in reality at the moment , waiting around for a complaint to get you an appointment isn't necessarily going to help your Medical Situation either as you may still end up being rushed into a Junior with an equal lack of knowledge in the condition. And when I say rushed in , this could still be months when in reality as they wish you to do a rapid taper ASAP you need proper advice now.
Please keep updating us on how you get on. Take care xx
Sorry to hear of your pain and confusion, very understandable following the ‘cop-out’ Email diagnosis, which seems quite a ridiculous situation.
You say you’re glad to escape Prednisolone - wouldn’t we all be!
I’ve endured it in a roller coaster of varying pain levels of PMR for more than 20 years.
Coping in pain as a self employed Electrician driving to London daily to work alone in my small business in Wimbledon.
Quite a strain lifting Antique lights up high with aching shoulders hips and arms to earn a crust!
Now nearing 74 and retired since 2011.
On 2.5mg - a continuous dose (latest GP idea to keep it ongoing at that level.
At present coping with right arm and shoulder only in daily pain, which eased during the day. I try to be active with Physio home exercises taken from my GP listed guide.
I’ve never been on more than 15 mg for more than 1 month, usually down to 7.5 over about 12 months. Then slowly on down to quit completely. - then I await the Niggles of pain recurring within two months. I then go back on 10 mg to get relief within 3-4 days usually.
My GP is testing me in any way, as I cope with this routine which suits me.
My CRP was raised at one point many years ago , which had not been mentioned by my original GP who found my Sed rate perfect.
My subsequent referral to a Rheumatologist (20 years ago) was not conclusive in any way really, he did do several sessions if Cortico-Steroid jabs decide as my Pred response was good, PMR was must likely diagnosis
I fear your sudden drop in dosage is going to price too fast. 5mg dawn every three days is too speedy IMHO.
I’m afraid you are going to have to vigorously self advocate now. You shouldn’t have to but you won’t be the first in this situation by a long way. At this stage of taking Pred, I got really down as I started to feel the accumulation of Pred. It is tough but it gets better.
re my Rheumatologist jabs- they worked in 3 days for amazing relief but soon pain returned and he could do no more for me he said. and I started the slog of years on Preds.
I’m confused as it seems to affect only a small part of me at each recurrence. Usually a bicep, upper arm or just one shoulder.
Back to my point of replying - I fell you may well be in more pain if you reduce so fast as your post indicated.
Especially since the non-diagnosis is based on a false premise! Expressed by someone who is probably out of date and totally disinterested as he is off out the door to play golf ... He will not have looked at the most recent GCA guidelines because he knows it all and won't need it again anyway.
If it improved at 30mg but came back at 25mg that is probably because 30mg is really on the very low side to start a ?GCA patient. There are plenty of people on the forum who were started at 60mg who then took 6 months to reduce to the sort of dose you are at now - and so had an awful lot more pred to cope with than you did.
Given the cases recently who have lost their sight and the article Dorothy Byrne wrote - is it any surprise this happens?
My optician in Scotland used to write a referral letter immediately and rang the local eye department before sending the patient with their letter to A&E. Who knows how many people's sight he saved.
I think you need to find a better GP (if that is possible in N Wales) and really seriously consider an early private appointment somewhere.
The rheumy is obviously on his way out of the door to play golf and hasn't kept up to date with the most recent GCA guidelines, not to mention the 2015 Recommendations for PMR. I wouldn't mind if GCA and PMR were aware of this ridiculous rule they can't happen in 51 year olds - but they do, and in younger patients.
I cannot believe how badly you have been treated. Out of interest did the pred help your symptoms. I am amazed that the rheumatologist is so good he can diagnose someone by email based on their age alone, why do we need to go to doctors’ surgeries if they can do it all without ever talking to us?
Do be careful when you get down to around 7mg when your adrenal glands will need to come out of their hibernation and start working again. I got unbelievably tired and you may need to slow down a bit then.
All I have had symptoms wise is fatigue since being on pred. The rheumatologist said that I am to young, the inflammation markers are up because of my high BMI and also when they try and drop the dose my headaches are terrible, so he said that the pred is not working!
I’ve had no support at all, and now have Cushing syndrome, which is terrible and as I explained prob what is causing the fatigue.
I will give it a go, but I can see me being back at the GP’s
The Cushings will go away when you get off pred. I assume you had symptoms before pred which was helped by it. It will be interesting to see if these symptoms come back. If they do, STOP the reduction and tell your GP. Good luck.
I developed Cushings syndrome when I was switched from prednisolone to methyl prednisolone. I was switched back to prednisone and cut carbs drastically - and steadily lost weight, starting from round my middle. The doctors now say there is no evidence at all I am on pred - I'm a bit overweight still, technically I have a BMI that says "obese" - but it doesn't make my markers high. ARE you very overweight? It sounds as if this doctor is weightist - being overweight can cause problems, but it doesn't cause PMR or GCA and it is disgusting he is blaming you for being ill, which is what it amounts to.
And I nearly forgot - pred only works for PMR and GCA if you are on ENOUGH pred to combat the inflammation If a higher dose stops the symptoms, then the pred is working. If a lower dose brings those symptoms back - the dose is too low.
Yes I am over weight, I told him today that my weight is not causing the symptoms, as I’ve been over weight for years. I am sick of the GP’s blaming everything on weight. I have asked for help and support with losing weight. I can’t abstain from food. If I wanted to stop smoking (I don’t smoke by the way) they would be throwing all sorts of help at me
They would - but if we are overweight, we are just greedy and have no self-control. Though you could say the same about people who can't resist turning their body into a chimney. And the establishment has compounded the problem by backing low fat eating as a weight control strategy when it is blatantly obvious that people's weight has gone up in line with sugar consumption...
Yes - piglette has reminded me I meant to to comment on the rate of reduction. You may be OK down to 10mg in terms of adrenal function but once you get to 10mg you must slow down or you could become seriously ill if your adrenal function can't keep up.
Of course - if it really is GCA/PMR (and it very possibly is) you will be slowed down before that!
You can definitely have PMR and/or GCA even though you're only 51. There are several members of this forum who are younger than you and who have either or both.
I can't comment on the majority of what you've said not knowing enough however I'm concerned for you dropping at that speed. I'm just fast tapering now from 15mg to 10mg for 2 weeks then 5mg for two weeks, I never got below 5mg because of pain. Now waiting for scan.
It's really not easy tapering by 5mg every two weeks never mind your schedule. I echo everyone else and say find a better GP who will work with you. Your sight is not to be messed with. Best of luck.
Dee, you've received lots of good advice here and I hope you ignore the ridiculous reduction you've been instructed to follow and get proper medical attention soon. You titled your post "Disappointed", personally I would be "Screaming Angry".
Well, this is certainly an eye opening thread for me. Having just received my positive biopsy for GCA 3 days ago, I’ve already experienced the dismissive attitude of “you don’t have it because your sed rate is normal.” Fortunately I have, I should say, inroads with the medical community having worked in it for 35 years, and I was able to convince my ophthalmologist friend to refer me for biopsy despite his skepticism. In the US, most doctors are motivated by wanting to actually help their patients. We have our share of them who would dismiss your complaints with whatever justification they could find just because they don’t want to deal with your complicated issues. I hope you will stand up for yourself and find a doctor willing to be on your side and do what they are supposed to do.
You treatment by GP and Rheumatologist is shocking!
I was 46 when a PMR diagnosis was made. I struggled through that two year period without prednisolone as I thought I was too young to be on steroids. My GP prescribed a whole cocktail of other drugs and I struggled on in pain for a couple of years. I think that the PMR then went into remission for a few years but came back with a vengeance when I was 54 four years ago. It was far worse and I had no choice but to go onto pred. Even then I had to give up my business and I have been unable to work since. I do have osteoarthritis too but the PMR pain is very different and when added to the OA pain I was unable to cope.
However, throughout the last 4 years I have had the support of my GP and Rheumatologist. It has never been suggested that I was too young to have PMR. I was the one questioning it!
So, if I was in your situation, I would phone my nearest private hospital and ask the cost of seeing a Rheumatologist. I think you will find its between £150 and £250 on average. When you do your research fund one who practices both within the NHS and privately. Then if you go down this route the consultant may add you to his NHS list.
You also have the right to ask your GP for a second opinion. You may also consider seeing another GP. All of these things take a toll on your mental health too, so please do look after yourself and give yourself the care you need. I am sorry you are having to go through this but at least we have all the wonderful knowledge and support from this forum so we don't feel so alone xxx
Thank you so much. I am stuck as the rheumatologist is retiring and as of yet they don’t have a replacement there isn’t one to take me onto their list. I am going to do what my GP has asked, but believe me if my symptoms come back I will have the place up big time. I’m so fed up
I understand that locally you don't have a Rheumatologist in position but for a 2nd opinion you are able to ask if you can see one in a different hospital. It would not hurt to call your nearest private hospital to find out what Rheumatologist is working out of their hospital and then research him/her online to see where else they are working. This is how I found my latest in my consultant collection, an oral surgeon, who are as scarce in the NHS as hens teeth! I saw him privately at a cost of £150 and he's noe added me to his NHS list for my operation. I am still having to wait but at least I have seen a consultant in person. It does all take a lot of mental energy too, especially if you are still working. I hope your path becomes smoother and you are able to get the help you need xxx
The situation in Wales is different - and they will block any attempt to get to an English hospital for a second opinion. They won't even pay for lupus patients to go to a centre of excellence in England. They consider a GP with a special interest to be capable of managing SLE - and then they leave without telling the patient! National HS it isn't ...
Have just read through all this and I should be surprised and amazed at the treatment you’ve received. Unfortunately I’m not - just very annoyed and frustrated .
You’ve received an awful lot of advice and at the end of the day it has to be you that follows through.
The last post you wrote you said that you would have a go at following your GP’s advice. I really feel that this GP has given you really bad advice so if you agree to his schedule just be very aware to take action if any symptom gets worse, especially of course your eyesight.
Dee I am so sorry to hear all that. It is truly apalling. Especially with the potential risks of GCA to be diagnosed by email is just unacceptable. I'm in my 50s and had the same bias as you. Finally agreed I have PMR, no idea if I have GCA because I was put straight on 50mg of steroids and have been advised that is masking any symptoms. So who knows. I asked for a second opinion and had Fibromialgia added to the collection. A lot of what you are telling me is raising alarm bells in my head. Are you in the UK?
I had to put my foot down and make some noise. We are all entitled to a care plan and as far as I can see you are not getting that. The GP said she would not support my second opinion request for referral to a specialist hospital in Dundee. I got an MSP involved, things started being taken more seriously. You need to get by the GP point. My experiendce of GP's is that they are so behind in their knowledge of such conditions and as such they really should make sure you can get a referral on.
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