This is my second bout of PMR completely different to the first . This time I was just stiff and unable to turn over in bed with a little neck pain and some hip pain .
My ESR was raised and my Doctor allowed me to try a week of pred . This stopped my symptoms so I started on 15mg , I am more or less treating myself. Last time I had PMR I helped out with admin etc for 5 years with PMRGSA South West so was up on much of the ins and outs of this condition . I am now questioning my diagnosis - made by myself mainly as I have suddenly developed absolute fatigue with doing very little. I probably have done too much over the last few months looking after my 79 yr old husband who was shielding , physically and mentally. ( I am 75)Now I feel absolutely wretched most of the day. I feel as if I have a cold although I haven’t but do have ringing in my ears and deafness. I am on 10 mg pred. I didn’t have tiredness to this extent before hence my questioning my diagnosis. My doctor was never that helpful as she doesn’t seem to know know much about PMR. I cannot book an appointment at this time do will have to ring for a phone consultation. Is the fatigue this bad?
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Your complaint of tinnitus and deafness to go with the worsening fatigue does make me wonder about the possibility of this being GCA - recent research has shown that ears can be affected too.
It is a pain when your GP is not up-to-speed on PMR but under the current arrangements you might get to speak to someone else who has more idea. Your other option would be to call 111 and ask to speak to a doctor. Whichever you try, do emphasise the deafness. Was it sudden or has it crept up on you?
Either way, I think you really need medical attention and treatment asap.
I had tinnitus all the time on the higher doses, like a ringing or being able to hear to hear the pulsing blood in my ears. Prior to diagnosis with GCA I had been to the GP with hearing reduction in one ear particularly and the tinnitus was way more annoying.
It may not have morphed but been large vessel vasculitis all along. I had a few GCA symptoms but no-one ever asked about them and I didn't know then what I know now.
Remind them that a set of symptoms may belong to one disorder and you need the pattern to identify it. Like a jigsaw!
Hello, I am sorry that you feel unwell and that you are also looking after your husband. Firstly may I suggest that you consider your ESR reading, I have no idea what it was, nor could I interpret it with confidence - if it is lower than mine.........your prescription will be lower. I am newly diagnosed with GCA and to give you some idea, my ESR was 89 and CRP 14. My reducing dose of prednisilone is after 5 weeks, 80mg, but has been as high as 120mg.
Onto your GP not having a full understanding of your diagnosed condition: not unsurprising if they are a generalist and their career pathway has taken them say paediatrics, gynae, trauma. What I can confidently reassure you with is that your prescription , whilst erring towards the caution, would focus on being lower than too high. Mine started at 60, then increased. On that basis, your GP I think is determining is this sufficient and whilst they might not be conversant with your disease, they are competent in treating inflammation, plus I am discovering that all of us suffer differently.
Might I suggest two things to consider? Firstly, let’s get the easy one out of the way and introduce another professional to answer questions about the effects of the drug? Phone your pharmacist - they will know all about the side effects, after all, the doctor is the prescriber and is the authority on patients, the pharmacist is the dispenser and the authority on drugs.
You will lose nothing by making a call or even if you want more time, book an appointment with them - they have a consulting room. Next your GP, I too struggled to get past a telephone appointment, we won’t go there, however I was very lucky to have my sight.
If you are unhappy, call for another appointment. I am not surprised you are fatigued, this is a known side effect of taking prednisilone, but may I ask you to take two other factors into account? Your age, I am sure that you don’t look it and of course the huge amount of work associated caring for someone else’s needs. This may account for low mood which also makes you feel worse, both physically and of course mentally.
In regards to some of your symptoms, I definitely have GCA, but I suspect that not all of these are associated with my disease, prednisilone either: aspirin has given me tinnitus, even as a child. A low dose aspirin I take each evening I think contributes to this sensation. I also feel pressure in my ears, much more pronounced after taking my steroids.
On that basis, I would ask for another appointment if you are unsure. You have enough on your plate I suspect with the worries you describe. Prepare for your appointment, telephone or otherwise and if necessary make a list of everything you wish to talk about, including being a cater. If you are in the UK, your husband can claim for financial support to acquire funds to help you with day to day caring and of course social services and occupational health can also be involved to determine what they can do to help: there is an enormous amount of untapped resource.
Finally, if you remain unhappy. Complain. General practice projects an image, but ultimately they run a business. GP are contractors to the NHS and therefore are responsible to deliver a service satisfactory to the patient. If you are really not satisfied and are worried, complain. You will have a local advocacy service who can support you. Contact your practice and ask for the complaints procedure which will contain all that you need to know - you may not want to damage your relationship with your practice, but you obviously are not happy.
One final thing, from my personal experience, no question GCA is the correct diagnosis for me. If you think you have it and no one will see you, like my experience, go to A&E or simply dial 999.
Good luck. I really feel for you. One last thing is though, care for yourself.
"Firstly may I suggest that you consider your ESR reading, I have no idea what it was, nor could I interpret it with confidence - if it is lower than mine.........your prescription will be lower."
That doesn't actually apply - there is little association between the ESR/CRP and the dose required. One in five patients even with GCA may have levels that are within the normal range or only slightly raised but GCA requires a dose that is at least 3 or 4 times higher than that for PMR. You are on an extremely high dose so most people will have a dose lower than yours - but not based on their ESR/CRP levels.
I realise that you have had good experiences with your GP and with your pharmacist but not everyone is so lucky and if you had been on the forum longer you would have heard some very hairy statements from both, even rheumies have some strange ideas - one told a patient that they couldn't develop GCA when on a pred dose of 10mg/day and refused to consider signs of GCA developing. That is patently not true - if it were then 15mg would be more than enough to manage GCA. It isn't.
And have YOU attempted to apply for attendance allowance in the last few years? 25 years ago it was relatively easy - not so in austerity Britain.
We all speak anecdotally here without knowing all of the facts. No I haven’t applied for attendance allowance for myself, however, I used to work and my wife still does work for an advocacy charity and which helps the elderly considerably. We engage with various agencies to assist the elderly and vulnerable and without wishing to contradict you, we have had significant success in addressing many issues: my wife in particular - in that regard, might I suggest hundreds if not more are in receipt of attendance allowance through her action. Attendance allowance is not the only source of support and might I suggest that if you are experiencing difficulties, I am not surprised and it is in that regard, perhaps you may need help too. My wife is a regular caller to seek support from those who understand the system and can complete the forms correctly. Completing the forms alone is a nightmare and that in turn results in failure.
I give generic advice to people which is deliverable, my knowledge about health is significant, but I don’t try to give advice for what I am not qualified, nor should any lay person. Which is something which concerns me considerably. You obviously have knowledge in that regard and that is your choice to share. My comments are always anecdotal.
This lady seeks help which she, not you or I can fully provide. Therefore the course of action I have suggested to her is practical and deliverable and is a first step towards achieving a solution. You may wish to add more.
Your wife couldn't help me - I don't live in the UK. However - there has been a lot of discussion over the last several years about getting benefits and the problems of filling in the forms and where to get help.
Thanks and I am sure that there has been Many people who have been unsuccessful. I can only advise anyone who is seeking to do this on their own, without full understanding of the process to seek help - Citizens Advie are good at signposting to local agencies as can some Clinical Care Groups - contact details available on the NHS website.. You raised the issue of attendance allowance and me having applied, I responded - no I haven’t applied, but I have managed to achieve quite a lot, but nowhere near as significant amount as my wife.
For me, fatigue is one of the worst features of PMR. Sometimes it hits me suddenly and I wonder if I'm to make it to the top of the stairs. When it is as bad as this I just have to lie down. Sometimes I sleep but even if I just rest, I usually feel a little better after an hour. I too am 79 and take both Pred and Methotrexate, the combination of which I feel contributes to the fatigue. If I have a good day I tend to do too much and it is worse the following day, so I have learnt to pace myself and listen to my body. Both husband and I have been isolated since March so all in all life has changed somewhat!. Try very hard to be good to yourself and I wish you easier days ahead.
Well done for keeping your sanity! With what is going on at the moment and people getting concerned about the minutiae of what is sometime quite minor, individuals such as you and your husband and the challenges you face as individuals can often be overlooked.
I have just witnessed a whole host of complaints regarding bird hides remaining locked. I appreciate that bird watchers miss their hobby and the therapeutic benefits, however, they can still go out and visit the locations, can stand or sit adjacent to the hide etc. You on the other hand.....
Thank you for your response. For once in my life I am very grateful that I was an only child, as I was used to spending hours on my own. We have a 'library' of 2000 books, love music and studying, so we both count ourselves lucky in this respect. We also have a garden that has been such a joy and kept us busy over the past few months.
Our disease is very complex from my limited knowledge of it, however we all have a degree of knowledge and I suspect mine is far more anatomical based than anything else. I do have an understanding though of primary care and can argue the case for an against general practice in particular. obtaining support and help isn’t always on a prescription pad and therefore the holistic needs of the person, not the patient need to be addressed. Should you have a question along the lines of acquiring social support, please don’t hesitate to message me and I will ask my ever youthful and sylphlike wife - she is a fount of knowledge. It is surprising that having set up a social prescribing scheme some years ago, how many GP’s are taking up the service Nationally: particularly as many health conditions can be helped enormously through sorting normal day to day problems, which to some seem quite ordinary.
Good luck with youR books and reading. Prednisilone and associated Insomnia has finally allowed me to delve into a 2000 page book on the Silk Road - at least two hours every night. Incredible learning about the development of the world and how China is moving back to preeminence. Every cloud has a silver lining and in this case “no pain, but lots of gain”.
That also makes it impossible to tell the Dr how you actually feel. Fatigue, earache, nausea, painful chest makes 4 complaints and they can only deal with one or two at most. Lol
I was diagnosed w GCA in Dec 2016. My ESR was pretty high - I forget exactly, but something approaching 90 I think. However, I started on 40mg pred, because I was diagnosed in v good time (thanks to my medic husband). GPs always were a bit of a lottery, and it's much more difficult now, thanks to Covid.
My main presenting symptom was a particular type of severe headache, but there was a generous range of other symptoms too, including earache. There was scalp pain, jaw pain, and sinusitis type symptoms, which included losing my sense of smell (which I've never quite got back). My eyes were somehow affected, but not permanently. But as has been mentioned, symptoms do seem to vary quite a lot from person to person.
I did have noticeable fatigue before diagnosis - spent a lot of time lying down, that month - but it became extremely more noticeable after starting pred. Really overwhelming a lot of the time at first - generalised overwhelming fatigue accompanied by noticeable muscle weakness.
I've had the fatigue to some extent ever since - about 3 and a half years now - and it waxes and wanes but, on average, is gradually improving. Am now down to 2mg - 2.5mg alternating.
So, 'absolute fatigue w doing v little' sounds absolutely familiar to me.
Therefore, I would try to get checked out for GCA, if I were you. There's always A&E if the GP doesn't perform. Better safe than sorry?
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