I posted before Christmas, and got lots of advice, I went to see my GP on the 23rd Dec. I asked for a referral to Rheumatologist, he said no point as what can they do differently!
I’m now back on 30mg pred, so had to go back up from 20mg, due to headaches and PMR symptoms. My GP said as long as I’m on the steroids that’s the main thing.
My headaches are not as bad, but I’ve still got no energy at all, my neck and shoulder pain is terrible.
I am also struggling with sweats, so bad, runs down my face and my hair is soaking. Does anyone have any advice please? Do massages help? And is there any tips about dealing with the sweats?
Thanks so much
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Dee02
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In fact the majority of people with PMR only never see a rheumie. That is not true for GCA, when you should see a rheumie. The sweats are awful, they are due to pred. I used to tell people I had been swimming!
The GP said I had GCA, he checked the pulse in my temple and said it’s ok. When I reduce the pred I get terrible headaches, I don’t know if I have it or not, one time he says yes, the next dismisses it.
It’s so embarrassing the sweats and in work it’s terrible I’m sat in meetings and it’s running down my face. I’ve been looking for a decent make up, so at least that will help a bit.
With the neck and shoulder pain, have you found that massages help?
In that case your GP should make an appointment to see a rheumie. I think some people tie their hair up in a scarf. There is not much you can really do except stick your head in the freezer! I have had massages but gentle ones, I also visit an osteopath who knows about PMR who is brilliant.
You really should see a Rheumatologist if you have GCA as piglette says, massage can actually make the pain worse, all l ever wanted was just a gentle pressure ie just like a light touch on the muscle & somehow it seemed to sooth it.
It’s late now & the more expert GCA Members will probably be in bed but l would think Dorset Lady will reply to you in the morning.
Is that right, Piglette - never see a rheumie? I never realised - in fact, after faffing around for a couple of weeks with the GP - it was only by visiting a rheumie (at my wife’s insistence!) that I got a diagnosis..... It took about half an hour at most and, looking back, it was the best decision I made!
I was the same I went to my GP who said I had a virus which went on for months! I then paid to go to a rheumie privately, I was in agony, who diagnosed PMR in a few seconds. Luckily some GPs are better than mine! If PMR is diagnosed by your GP there is usually no need to see a rheumie unless you are very young (under 50) for example or have other problems.
It’s one of the best things about this forum - being able to compare experiences; seems like yours and mine followed the same pattern? Imagine how it would be if all of us on the forum had had an idea what PMR or GCA was before we were struck down with it and all our GPs were clued up about it?! My wife was utterly mystified as to how I’d gone from (reasonably )fit & active to practically disabled in a matter of weeks - fortunately for me she has faith in medics and booked the private appointment for me!
My GP is at least ‘malleable’ - I had to go to the surgery yesterday to try and sort out a chest infection which arrived with impeccable timing (Christmas Eve) and he enquired, somewhat apprehensively, as to my current dosage of Pred.... just for the file you understand!
By the way, it’s gone from 20mg/day to 1.25mg and it will be 4yrs in March since diagnosis - how about you?
He didn’t seem to be overly-so, PMRPro...... wants me off them! We had a further chat, agreed on further blood tests next month to check inflammation levels (my suggestion) plus the usual chloresterol etc and then spent a few mins discussing watches, until his next patient was due...
I managed to get fourteen side effects from steroids. I have had five different GPs as they keep leaving. None of them seem very happy there. I did have one excellent one who has just left after six months. I have had very high CRP and ESR and feel like death. They panicked and thought it might be cancer so had lots of tests. They have now given up and say it is just me.
You need to have GCA properly ruled out ( or in ) by a Specialist , the GP can't keep making knee jerk decisions with your health.
If you are still suffering uncontrolled symptoms at 30 mg you must be seen by a Rheumatologist to confirm your diagnosis and treatment , and as soon as possible.
You have the right to see one , so you should politely but firmly request that you want an urgent referral to Rheumatology for suspected GCA .
The sweats can unfortunately occur on higher doses of steroids as the higher level of Cortisol in your system can affect how well your Autonomic Nervous System can do the job of Temperature regulation.
I have a spritz bottle of water which I cool in the fridge then put in my bag with a little cloth . If I overheat flush or get the sweats I spray it on the back of my neck , wrists and ankles then after a few moments dab it dry . The change of temperature on the neck can confuse the nerves and stop the sweating . It's better to cool the neck this way or with a damp cloth , and sip cool water as your skin itches before the sweats begin than to set your head or brow. It hits the autonomic nerve which follows the spine .
Wearing a light fabric head band or tied head scarf can also help reduce sweat from the head being obvious.
Keeping well hydrated and having a little isotonic or electrolyte drink at breakfast can also help reduce temperature issues and general muscle and nerve pain in the thighs and groin area.
Increasing Magnesium and Potassium in your diet also helps.
I hope you do choose to get a referral though , even if it turns out not to be GCA you may need more specialist advice for your PMR and steroid side effects of some other issue may be causing the increased headlines that may need added medical help , take care and keep posting .
Thank you so much, next time I will insist on a referral. I just don’t know where I am with my GP.
I have all the symptoms of GCA, including the jaw pain and scalp pain, but it’s the headaches that kill me.
I think that I need to see a specialist as I only have one kidney and I’m getting lots of kidney pain, and I’ve read that pred can affect your adrenal glands.
My GP is more concerned with my weight, I know that it’s worrying but I feel that’s all he is bothered about.
Thanks so much for the advice I really do appreciate it
If you have any problems at all with your vision please get to your hospital emergency department as soon as possible. GCA is potentially as serious as a stroke or heart attack, as my ophthalmologist told me. My GP never mentioned GCA although everyone with a PMR diagnosis should be alert to it as the two diseases are so closely related.
Your doctor should be much more concerned about your symptoms than with a potential side effect of weight gain from the medication - which can be managed - has he actually given you any advice about avoiding too much weight gain from the pred?
None at all, I was pre-diabetic and I’ve now become diabetic. I feel that everything is so fragmented, I have other physical disabilities and no one is looking at everything as a whole. I take so many tablets, I’m on over 20 a day.
I do need to see someone who can take a lead as I am up and down, and my symptoms are debilitating at times. For 3 weeks before Christmas I couldn’t even managed to shower, I’ve become more or less housebound, but I am pushing myself to try and do things.
The more you say about yourself in this thread the more convinced I am that your case is being totally mishandled by your GP.
If you are on 20 medications a day that alone indicates there should be a complete review involving any specialists who might have made separate prescriptions. How can anyone know whether maybe your debilitating symptoms are being at least partially caused by the medications? This will be even more important as there must be quite a load on your single kidney.
The effect pred has on the adrenal glands is simply that it takes over supplying cortisol so the adrenal glands no longer produce it. This means when a patient is tapering to a very low dose it takes time for the glands to start to produce enough cortisol again so the taper has to be slow. It is nothing to be concerned about as long as your dose is still above about 7 or 8, and by then most people are tapering in very small, slow steps anyway.
Hasn't the GP also referred you to a kidney specialist if you are also suffering kidney pain ?
I would suggest you need to have you full kidney profile and urine tests for electrolytes as well as a referral.
The steroids or PMR/ GCA may have affected what treatment you need for your kidneys and you may need extra self care to help you kidney cope with processing steroids , and you could need an increase or change in kidney treatment and more monitoring so that both Conditions can be properly controlled.
Yes you have PMR , and you could have GCA but your long term kidney issues could be having affect on all of your symptoms , especially the temperature issues , sweating and part of your weight gain.
Can you see a different GP in your practice ?
If not , you do need to ask for those referrals as your GP sounds like they are out of their depth with your more complex individual Health issues.
It's never all just Pred or just PNR or GCA if you have other Chronic Health issues as well.
If you find it difficult to get what you want at an appointment or don't feel confident pushing for your needs do take a calm , sensible friend or family member with you for support , tell them what things you want answered and sorted out before the appointment , and ask them to step in politely on your behalf if things are not going as you need it to.
Your weight is not an issue compared to losing your sight and your gp needs to refer you. As heron has said any vision probs and go to a&e immediately. YBB
I don’t see a kidney specialist as my GFR isn’t low enough, it has dropped slightly, and I am going to go back to see the GP, and will see a different one this time.
It’s such a fight to get anything, and when you have no energy I just gave up, but thanks to the advice i will go back and insist on a referral
If this was me with 20 meds, profuse sweating and hot flashes, kidney problems and probably GCA, I'd be off to the A&E at the hospital in the morning. You need a coordinated team of experts evaluating your condition and plotting a path forward.
The dehydration alone is dangerous for you with only one kidney. And I'd not be taking magnesium, potassium or any electrolyte drinks until I found out what the heck is going on. Those can put a strain on a pair of healthy kidneys.
If you do have GCA 30mg is a very low starting dose of pred which is usually between 40 and 80mg depending on the severity of the condition. I hope you can find help very soon.
Don’t need to add anything to others comments, other than if you have GCA, and it certainly sounds like it, then
a. you need to be on a higher dose than you are, and
b. you need to see a specialist - at least once, but as others have said most continue with a Rheumy if they have GCA.
Please go back to GP (taking someone with you for moral support if necessary) and insist on a referral stating that if you have GCA then it should be treated as a medical emergency.
It’s no good him saying as long as you’re on the steroids that’s the main thing - you need to be on the correct dose, and at the moment you're not.
What an arrogant GP - he is not experienced enough to manage a patient with GCA whatever he may think. Neither does he have access to the testing that might help confirm this is GCA which, while not essential, is very relevant at a later point in the journey when questions arise. Even atypical PMR presentations should be referred to a specialist. And if it is GCA - 30mg is nowhere near enough.
I do realise there are major problems in Wales as a whole - but your GP is being negligent. If your GP won't do anything and the symptoms get worse - go to A&E
I’ve had pmr for 3 years now and have never seen a rheumatologist. However when I developed headaches and pain over my right ear I went to the Gp. I saw a locum who was humble enough to say that he knew a little about pmr and GCA, but not enough. So he rang the hospital straight away to elicit some advice and I was immediately given a prescription for 60mgs of pred. In the event it was not GCA but the preventative aspect was there immediately and I felt reassured by the gp’s actions. Unfortunately he’s not at the surgery all the time!
I would ask again. I was told by my gp that a rheumatologist had to make the diagnosis of PMR as there was a lot of over diagnosis of pmr and chance that it could be something else as pmr has same symptoms as a lot of other diseases. I had about a month of tests to rule out lupus, lyme’s disease etc. Worrying that different gps seem to deal with this differently but if there is one thing I have learnt with pmr is that you have to manage your health care ! Best wishes
A GP who couldn't be bothered to do the basic rule outs themself! If we all had to see a rheumy for a diagnosis we'd have been in pain for even longer - up to 18 months if you happen to be in Northern Ireland! If we all got sent to rheumies the queues would be years long everywhere ...
I saw my rheumy quite quickly but it really was a waste if his time as my gp was more than capable of managing my pmr but if i had gca my rheumy stated he would manage my care not the gp as quote "they dont know enough about it to manage it properly and safely". Likenyou say the lists would be horrendous if everyone with pmr saw a rheumy.YBB
It varies greatly from region to region and GP to GP. If they just put in for a routine appointment it can often be 6 months or more anywhere. Many rheumy patients have their annual follow-up appointments cancelled - and getting a replacement one can be difficult. Even GCA patients in the wrong place may wait weeks - and that is supposed to be treated as a medical emergency. Think what could happen if it were a heart attack or stroke and you waited that long.
Haven’t got anything to add really except if you can’t get a referral to a Rheumatologist could you consider going privately even just for a consultation? You could then maybe continue with that Rheumy on NHS. Unfortunately though like GPs not all Rheumatologists are helpful. I’m sure if you wanted advice re a suitable one if you started a new thread someone who is near to your location could advise.
I am afraid finding someone to take control of all conditions is all but impossible. However, first see a different gp and if no action contact practice manager. The gp should be referring you to different specialisms and "project managing" you based on results. It takes persistence I am afraid. But it can be worth it. I am currently dealing with rheumy gastro and physio. I was discharged from diabetes clinic. But you need to see different Dr and say you want referral to rheumy and diabetes clinic. Discuss kidney issue with latter who should show some interest. I am getting up to 20 meds a day and have to be very proactive. Rheumy was easy as Dr did it on the back of an early flare. The rest have taken 3 years plus to get through the system. So the earlier you start the earlier you will see them. I hope you can see someone else and at least start feeling supported.
Thank you all so much, i really do appreciate all your advice and reading all the threads on this forum has helped so much, given me lots of tips, but more so lots of understanding about PMR and GCA.
I am trying to get to grips with all the meds, I typed it wrong, I’m taking about 20 tablets a day, 9 different meds, and now diabetic meds on top.
I rang my urologist and he is sending me for a kidney scan next week, so at least that will give me some peace of mind. My GFR has dropped from 64 to 51 since starting pred and some of the other meds, so need fo keep an eye as don’t want it dropping any lower.
I am the same, on 15mg pred, shoulders still pain, my arms do not have full range of movement, my headaches have now gone after five months, but I am seeing a rhuematoligist on Monday as doctor says I am not responding to steroids as well as I should.
But you DO have to be on ENOUGH steroid to work - and 15mg is towards the lower end of the starting dose for PMR. Up to 25mg may be required to clear out the inflammation first in PMR and if that hasn't happened even the slightest extra exertion will cause problems and return of symptoms.
You mention headache - if you have GCA, to be at 15mg after 5 months is a very fast reduction and I'd guarantee that most people on here with GCA would agree with me.
If your GP thinks it’s GCA you should see a consultant, usually rheumatology within 24 hours! Not sure what yours thinks he’s doing, what is he basing his diagnosis on??
Went back to the GP today after a terrible weekend. Saw a different one and took my sister with me. Finally agreed to write to Rheumatologist!! And then I get the... hmmm... you are too young to get PMR as you’re only 51... sorry I don’t fit into a text book... I explained about still having slight head aches and then because I have tenderness on the back of my scalp, he tried to say that it’s prob not GCA... anyway... for now I am just about coping, I now have Cushing syndrome from the pred 🤦🏻♀️ but hopefully I will start to get some answers 🤞🏻🤞🏻
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Rheumatologist in Essex anyone?
Could this be GCA even though bloods are normal?
Update from 5 months ago and new question
Cheek bone pain, deep earache on left side of head plus headache
Am I worried about GCA for nothing?
