For the last 8 months or so I’ve been I’ve been back and to to the GP and diagnosed today with PMR.
It all started with headaches and pains in my eyes and around my eyes and that my vision wasn’t quite right but I couldn’t work it out, , gp initially diagnosed depression..... so I went and had my eyes tested and an issue with my peripheral was identified so I was referred to an eye specialist who I saw but just shrugged and said eyes all healthy. So since then more symptoms aching joints, feel flu, noises in ears, can’t sleep, pain above eyes, stomach cramps, scalp tender and funny sensation...... etc so in desperation I revisited my gp on weds and demanded for at least some blood tests to be done. She called me today said my inflammation marker really high that I have PMR and given me 7 days of prednisone 20mg - that’s it........
So of course I’ve been researching today, if it is this 7 days of steroids useless and surely my symptoms at least warrant tests to see if I have GCA as I’m now really worried about my eyesight if this isn’t diagnosed and/or treated properly.
Any advice out there? Many thanks
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Dexter67
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I agree with you. The week of 20 mg pred should just be treated as a diagnostic tool because if it is effective in controlling your suymptoms it is one of the things they say helps to confirm a PMR diagnosis. If confirmed you would then stay at that starting dose for four to six weeks then start a slow and careful taper to find the lowest dose which continues to control the symptoms - usually a process which takes a couple of years, with remission and finally getting off pred anything up to about five or six years, sometimes less, sometimes longer.
But your eye and visual symptoms are concerning. Very high inflammation markers are also a sign that something serious is going on. Where do you live? Is there anywhere you can go where someone can check you properly for signs of GCA? An ordinary eye exam is not enough. Also symptoms trump any tests. If you find your vision is becoming worse and the pred doesn't seem to help the visual symptoms you really need to be treated as a medical emergency. GCA is as serious as a stroke or heart attack if it is affecting your eyesight. My ophthalmolgist told me that!
What have you been told to do at the end of the week?
There should be more people along when the UK and Europe wake up, including people with more knowledge of GCA than I have. In the meantime here are a couple of articles you may find useful:
Well if you have been diagnosed with PMR I am afraid that you will need to take steroids for a lot longer that 7 days. The average length of the disease is around 5 years on average. Some people have a shorter duration but they often relapse and have to start again. I am glad you persisted and got your diagnosis. I expect the initial 7 day dose is to confirm PMR. You ought to start feeling a lot better within that period although some people need longer. You have probably been suffering untreated for about a year, I can relate to a lot of your symptoms ( I have PMR) and agree that there are some that sound like GCA symptoms. The scalp tenderness and the eye symptoms in particular. You really need the advice of a specialist, Rheumatologist. In the meantime, if you experience double vision, jaw pain whilst chewing, sore tongue, an unusual headache I would get yourself off to a hospital emergency room and fast forward a possible GCA diagnosis. It should be treated with the same urgency as a threatened stroke.
If it turns out to be PMR then you should get relief, normal start doses range from 12.5 to 25 mgs. With GCA they may start you on 40 mgs to 60 mgs for a temporary period then taper down to a PMR start dose to taper from there very slowly in tiny increments. These are quite closely related diseases. Pred is the only drug that gives us protection from sight loss once the diagnosis has been made. It is not a cure it just takes care of the pain and inflammation, for the duration.
If you are not on stomach protection Drugs such Omeprazole then ensure you take your steroids with natural live yoghurt, early in the morning. Pred is probably causing the stomach cramps.
Please let us know what happens. This is a very anxious time. There a plenty of very informed, supportive people active on this site. The Brits are mostly asleep right now, but will respond to your questions as they arise.. Good luck!
I hope you have an appointment after 6 days to see how the 20mg pred worked? Because one week of pred will do nothing, management of PMR takes years, not days. Yes, pred IS the way to manage PMR but not a single course and stop, it is a chronic illness. However, hopefully she is using it as a diagnostic aid: how have you responded?
Heron has already given you the link to the Quick paper - aimed at people like your GP to inform them on how to best to diagnose and manage PMR, even GCA shouldn't be beyond them. Show it to her and insist she read it.
The ear and scalp symptoms bother me a bit - they are typical of GCA but I also had them on and off during the 5 years I had PMR not diagnosed but 15mg pred brought about a miracle in under 6 hours and those symptoms have never returned. The much higher doses are used for patients with eye symptoms and if you have ANY you become aware of, however minor, head straight for the ED.
You are in the US or Canada I assume? Please could you add a bit to your profile so we have some background to work on for replies to your questions - we have in excess of 100 post/replies to this forum every day so looking back through your individual posts isn't an option but looking at the basics on your profile is.
Thanks everyone for the advice. My first dose was this morning as only got meds at 5pm last night so was told to take them this morning. The GP when she called yesterday just said to take these for a week, never mentioned a repeat appt or anything so I’ll call first thing Monday morning and get a further appt. If she doesn’t refer me to a specialist I will go to A&E XX
Just want to echo what the others have said. If it’s PMR only, a week of 20mg should make you feel a lot better, but then that’s an indication to put you on a long term plan. If you have GCA as well, you’ll need a much higher dose. If the head symptoms persist and your eyesight is still wrong, I’d go to A&E in order to protect your sight. When I was diagnosed in A&E and my eyes were shutting down, there still nothing to see opthalmalogically speaking but 60mg of Pred brought it all back in 2hours. The A&E docs were much more switched on to GCA than my GPs.
I’ve seen the out of hours GP today and she couldn’t believe my GP just gave me 7 days Pred with no follow up or explanation. Anyway, she’s explained things, advised to see my GP again on Thursday to discuss ongoing treatment and protective meds to go alongside the Pred. She’s convinced I don’t have GCA and explained why.
Thank you everyone as your advice pushed me to seek a second opinion today and although I’m not happy with the diagnosis and having to take long term steroids at least I’m is getting treatment and hopefully i will feel much better soon. Thanks everyone
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