Hi there I was diagnosed with PMR 10 weeks ago with classic symptoms: excruciating pain in arms, shoulders, legs with increasing immobility during the day and totally immobile in bed at night. My CRP was 28 and ESR 36. Was put on 15mg Pred for 4 weeks - got rid of the pain but I starting getting mild on and off headaches with some blurriness- had eyes checked by optician and specialist - no concern. Was then put on 20mg after 4 weeks as CRP dropped to 11 then went to 16. After another 4 weeks back to 15mg as CRP 3. Sorry about long winded history but my question is - I now have almost daily dull headaches and vision that’s a bit out of focus - like my reading glasses have the wrong prescription. Of course I worry about any GCA symptoms but as my CRP is decreasing am thinking my eye issues are Pred related. Any advice/shared experienced would be wonderful! Thank you so much.
PMR headaches - is it the Prednisolone? - PMRGCAuk
PMR headaches - is it the Prednisolone?
Hello there from the UK. Pred can affect one’s focus and it changes with dose which can be a pain if you glasses. However, I have one important question before anyone can help. Unless I’ve misinterpreted you, are you reducing to zero each time after 4 weeks and then being put back on again for another 4 for the same process??
Thank you so much for your quick replies - sorry for the confusion - I was initially put on 15mg by GP who made diagnosis and had 4 week wait for Rheumy - she put me on 20mg (even though my symptoms were minimal now) as CRP went from 11 to 16 from Week 4 to Week 5. The 20mg gave me instant insomnia (as she told me to take 5mg at night which I didn’t agree with but she insisted) - 3 hours sleep a night, gastritis and anxiety! My Rheumy was on leave so I spoke to her colleague 3.5 weeks later and she agreed to drop me back to 15mg which I have been on for another 3 weeks now.
Sleeping much better gastritis gone with Nexium but headaches and the blurry vision.
Did the optician find your prescription had changed?
If your focus is affected it can cause eye strain. I found change from one depth of field to another caused temporary blurriness as my eyes cranked into gear to adjust. The first time it hit home I looked up from reading and saw my garden was a blur and I’m long sighted. I found moving scenery and objects difficult when it was at its worst. With dose changes it changed yet again but the motion problem got better as I reduced.
My GCA issues in the run up were more like intermittent black spots, grey outs and sparks of light in the night. Some people have patches of vision that go or double vision.
Thank you so much SnazzyD - I saw my optician when I had been 4 weeks on 15mg - I had just started getting slight blurriness - she said prescription still much the same. The blurriness is daily now (10 weeks Pred) and definitely much harder to see things further away (when walking can’t make out people’s faces cleanly coming towards me from about 30 metres and beyond)and also reading on phone, computer and tv subtitles the text looks like it is slightly out of focus and eyes def feel like they are straining. Headaches move around from top of head, back of head, neck and sometimes left temple on and off. Not as bad as migraines, more like dull tension headache - they come and go on different days but do hang around if I have read too much. Do you think it’s worth going back to optician to see if eyes are deteriorating? Thank you so much I feel so vulnerable!
Sounds about right. If it is the Pred there isn’t much you can do really. I found that Pred effects did accumulate and after about 3 months I really did find the side effects were all coming home to roost by then. By all means see the optician again, but if they come back with, everything being ok, don’t be surprised.
Also have a look at this issue that can mimic some GCA symptoms. These neck muscles are easily upset by posture, particularly looking at phones and computer. You may be craning more due to your eyes and setting up problems here.
Unfortunately both headaches [at a lesser degree] and blurriness are side effects of Pred particularly over 10mg dosage. But both should decrease as you lower the dose. Not much you can do about blurriness, but do make sure the headaches aren’t related to a change in blood pressure and keep hydrated.
A SnazzyD has asked, you seem to be hopping about on doses which probably isn’t helping - why?
Hello SnazzyD and DorsetLady
Thank you so much for your quick replies - sorry for the confusion - I was initially put on 15mg by GP who made diagnosis and had 4 week wait for Rheumy - she put me on 20mg (even though my symptoms were minimal now) as CRP went from 11 to 16 from Week 4 to Week 5. The 20mg gave me instant insomnia (as she told me to take 5mg at night which I didn’t agree with but she insisted) - 3 hours sleep a night, gastritis and anxiety! My Rheumy was on leave so I spoke to her colleague 3.5 weeks later and she agreed to drop me back to 15mg which I have been on for another 3 weeks now.
Sleeping much better gastritis gone with Nexium but headaches and the blurry vision.
Okay-thanks for clarifying, did wonder if that what you meant.. think you’ll just have to hope headaches and blurry vision recedes over time. But just make sure nothing else is causing headaches - they are always a worry.
Thank you so much - I sincerely appreciate your experience and wisdom here. I am hydrating and checking my BP regularly which has gone up a bit but Rheumy not concerned…. I guess my biggest worry is GCA of course and I understand your massive knowledge here - can you still develop GCA if your CRP is not going up? Also (sorry my Rheumy gives me very little info) I have had tension headaches and migraines my whole life and am not sure how you can tell what a GCA headache feels like. Thank you so much.
The problem with relying on blood markers is that they can sometimes lag behind symptoms as well as being non-specific. They just show you have inflammation in your body, but not necessarily what is causing it. So yes you can develop GCA with no discernible increase. But would say as you have a history of headaches/migraines, do these seem similar. Do you have medication you took for those? Might help..but do check they are okay to take with Pred..
Most people, including myself would say that a GCA headaches is not a ‘normal’ headache in any way shape or form. It’s horrendous, mine felt having a steel band around head being tightened [what I would imagine a medieval instrument of torture would do]. Bit dramatic maybe, but that’s what it felt like at the time.
As you are new, you might like to have a look at this-
healthunlocked.com/pmrgcauk...
Thanks again DorsetLady - unfortunately can only take paracetamol for headaches which doesn’t do much. So sorry for what you have been through re GCA - more people need to know about how life changing and debilitating auto immune disorders are for so many.
The UK charity does all it can, but it’s a minnow compared to much bigger and well known ones - but wherever you live you can become a member and get copies of magazine and invitations to zoom meetings etc -… have a look at the website. And maybe this a recent welcome post..
healthunlocked.com/pmrgcauk...
.. we do have few members on here from Oz… maybe put up a new post and ask if they’d like to form a chat group [on here if no more than 10 in total] or via zoom/ messenger whatever suits you best.
My early GCA headache was at the base of my skull and was resistant to massage or anything but was gone by breakfast. Later on my scalp felt like it has been dipped in acid. It didn’t feel like a normal headache which feels more to be like a brain ache. My temples were tender but the rest of it made that seem like small beer in comparison. For months my pillow felt too hard at night and wearing glasses irritating.
My sight has been a constant yo yo since the whole thing started. I have always been short sighted and could read things right close to my nose, now they can be blurry and for the first time ever I need reading glasses. Sometimes +2.5 sometimes +2 and at the moment +1.5 with no rhyme or reason. But my biggest bug bear is the floaters. They can be so bad that I don't bother trying to read anything. I have my eyes checked every 6 months and it seems I'm stuck with them as he initially said they could take a year to go but I'm into my 4th year now so guess I'm stuffed.
Hi Sophiestree thanks so much - I hate that we have no choice but to take Pred but it comes with so many unwanted extras!! Did you/do you get headaches too?
I'm very grateful for the pred to be fair, and every morning is a ceremony for me. Making sure I have a decent breakfast before taking them, and once that is over I can get on with the rest of my day. I don't have PMR, (although think I do have some symptoms) rather LVV (Large Vessel Vasculitis) and so I am not sure I can answer that as I get headaches from the LVV. Sometimes they stop me in my tracks, other times not so bad. For what I would call a 'normal' headache I would take dissolvable paracetemol (Panadol) where normally I would have Ibuprofen, which is off the cards now sadly. I don't particularly like taking any medication so I try first with a cool roller (purchased from a physio for back pain) which has been my life saver. It gives a wonderful cool effect all over your head. Not sure you can get it that easily any more but something like 4Head is also not bad.
Thank you so much for your great thoughtful response. All the best.
Fwiw, my blurriness comes on 3 hrs after I take my 7am 12mgs Pred and lasts till about 6pm. I take 5mgs again at midday. As an experiment I delayed my am pred till midday and since I had no blurriness in the am I concluded it was Pred related. I have x3 monthly FU at the opthalmo for glaucoma and other eye issues. Close work and screen time do seem to make it worse. If you are blurry before you you take your am dose it may be that there is another cause. I absolutely agree with sophiestree that floaters are almost unmanageable since starting Pred.
Yes, I completely forgot to say that these symptoms tend to be worst when the Pred is at its highest in the bloodstream.
Hi Suzanne28. Believe me you will know when you have a GCA headache. As DL correctly describes it the Temples and top of head feels like it is trying to separate from the skull to reduce the pressure. At its worst it lasted some 18hrs a day before sleep finally gave a short period of respite. Pred. was a blessing despite all the side effects. Don't reduce too fast or you will yoyo. Good luck.
Actually mine wasn’t quite as you mentioned - more like two parallel bands travelling vertically up from nape of neck, over top of head and then down front of face through eyes to throat… Very strange and disconcerting…
Long gone , but never truly forgotten .. 😭
Dear Suzanne28,
What a worry is that threatening GCA, isn’t?
But the headaches from GCA are certainly not dull, as the above replies to your questions prove. And concerning eyesight: mine looked like an oldfashioned tv: black en white all over, no way I could see anything. Let alone blurry. Thanks to this forum, I was forwarned, and immediately took a hefty dose of (60 mg) prednison. Still two functional eyes. 🤞🏻
What dìd make my eyesight blurry in the long run, spiking sugar blood levels. I apparently have kept diabetes 2 at bay previous to PMR/GCA by being active, walking, and sensible eating. With high doses of prednison, came insatiable appetite, and with the walking made impossible by PMR, diabetes 2 managed to fully manifest itself. And yes, I do need a comforting chocolate cookie, some nice buttery biscuit or whatever, from time to time. It is such a depressing, long time to get better. Sometimes the short term comfort is in order, at least for me.
Taking less prednisone and being able to be more active, and less depressed, puts my diabetes 2 to sleep again. So there is hope!
All the best!
Oma Kaat
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