I was diagnosed with PMR July 2019. I hadn’t heard of it before my diagnosis. I was reducing successfully by 1mg per month until I got to 5mgs. I then felt unwell with tingling in my head and around my temples. I saw a GP who suggested I increase to 10mgs , she said because of Covid 19 it was safer than being admitted to hospital for GCA tests. I’ve just started to reduce by half mg, I am now down to 9 but not feeling too good. Do I try to get through this or go back up? I haven’t had a blood test for months. I made a private appointment with a Rheumatologist last month. He twisted me here and there to check my joints. Felt around by temples and head and advised to try to reduce by a half per month. I have lost at least half of my hair. I find this site more helpful than any doctor. I’ve just started to take folic acid as suggested by the very helpful people here. I’m feeling quite low and tired at the moment. My head is tingling, but I’m not getting any of the other symptoms that might suggest GCA ( which terrifies me) I’m 66 next month .
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Darlingbuds1
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a. Whether you have PMR, GCA or both you are never reducing relentlessly to zero. You are tapering to find the lowest dose that gives you the same relief as the original dose did. So obviously at 5mg you’d gone below what you need.
b. Your GP was wrong, if she suspected GCA then you should have been sent for further tests. We keep being told the NHS is open for business - and GCA should be treated as suspected heart attack is. Furthermore, 10mg is not enough for GCA. Nul points GP!
c. Blood tests, although not the be all and end all should be completed in your case.
d. The Rheumy obviously doesn’t think you have GCA, but that doesn’t mean you haven’t. Has he written to GP and/or you with findings?
Personally rather than decrease I would be inclined to increase dose to 15mg for a while (if you have enough tablets) to see if that makes any difference. Any chance of running that past your GP? especially as you have a tingling head - which could be a symptom of GCA. If agreed- stay there for at least 2 weeks, longer would be better. Then reduce monthly -1mg - but only if you have no return of symptoms.
If you get any increase in head pain or any sight irregularities then go to A&E. They are open - and safe!
Fatigue - could be the steroids, but more likely another sign you’ve gone below the dose you need.
I have PMR. My GP said that it’s very unlikely that I will get GCA because I’m taking steroids . From what I’ve read on this site I know this isn’t the case. Thank you so much for taking the time to reply to me. I will go back up to 10mg and see how I feel
Your GP now gets minus a lot of points! 10mg pred will NOT protect you from the risks of GCA should it develop. Why do they think they treat GCA with such high doses?
My rheumatologist told me I had a zero per cent chance of getting GCA now that I was on steroids, but a thirty percent chance otherwise. Some of these doctors really do talk a load of baloney.
Hi me again. The rheumatologist wrote my GP suggesting I decrease by half a mg per month. My head feels like someone is pressing down on it. NHS site says headache and jaw pain suggests GCA.
GCA jaw pain is usually - not always - associated with chewing, especially harder things - and stops when you stop chewing. One suggested test is to chew gum for 2 to 3 minutes at one chew per second and see if that elicits pain. According to some patients GCA pain CAN be an ache but few doctors, even experts, seem to register anything that doesn't fit with the textbook they read.
Headaches and jaw pain are both symptoms which shouldn’t be ignored. I know I’ve been there.
To be honest, if you don’t get any joy from GP - and please impress upon her that if you have GCA your sight is at risk - again I know - then say you are going to A&E. If she still doesn’t spark ask if she’s willing to have that on her conscious - and go to A&E or at least ring 111.
I did lose sight in right eye, and no I wasn't on Pred.... long story, misdiagnosis!
So I'm always a bit worried about others - and maybe a bit pushy, but that's because I know what can happen.
I know you are on Pred, but the starting dose for GCA is 40mg minimum. So please, as difficult as it is, and I appreciate that you don't want to be a nuisance patient - in this case you may need to be.
I’m so sorry, you know first hand what it’s like . Why do they keep getting wrong? I’m going to call my GP first thing. I’ve increased my pred back up to 10 mgs. If he says ( once again ) that it’s unlikely, I will tell him that it’s not and he needs research. Thank you so very much .
Because they don’t fully understand it...or in some cases even know about it! It may be touched upon in their training, but certainly not in as much depth as other illnesses, obviously.
Plus because it is relatively rare, although not unknown, many GPs never encounter it.
totally agree, I have rec'd far more helpful advice from people on this site than I have had from my doctor and I like my doctor, but not sure she has all the info on PMR....one of the first things she told me was that my hair was falling out due to stress and can not be because of steroids. If it helps, what I have been taking is folic acid and a scoop of hydrolyzed collagen peptides with my tea in the morning and it appears to have slowed it down.
Don't mean to worry you, but I got GCA while I was taking Prednisolone for PMR (and had been taking it for three years!) I did not realise I had GCA, it was my Rheumy who found out. My blood results had started to gradually increase, but I had no headache or jaw pain and I felt fine. It was only when she prodded my temples I felt a slight tenderness in one tiny area, and I was also getting tenderness behind one ear (which I had put down do using headphones at work). GCA was confirmed with a temporal biopsy and PET-CT scan, and apparently I have it widespread throughout my body. The only jaw pain I get is when I start reducing the Pred - it only happens the first few days on a reduced dose and is really just a heavy ache sort of feeling. It doesn't last long, but for me it can come at any random time of day and it is not associated with eating. (I like to be different!)
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