I woke up in December and out of the blue unable to lift my arm, which was very painful. Had blood tests with results which suggested Polymyalgia. Started on 15mg steroids in January reducing by 1 mg monthly. Interested in other people’s experiences, as it hadn’t occurred to me that there was a site for discussion. Hadn’t even heard of the condition, which I found scary! The pain disappeared with the steroids, but feel low and very tired at times. Recently my eyesight seems affected, with double vision and the odd ‘flash’. I have occasional stabby pains in my head and dull aches, also stabby pains which can occur anywhere. I do get anxious and wonder if this is part of it! Am seeing Consultant Rheumatologist tomorrow, concerning my dosage , but am worried about my eyes. The Dr at the hospital Eye Dept didn’t think it necessary to see me over a week ago, and my blood results were normal. Sorry if I sound neurotic!
New addition to this site!: I woke up in December... - PMRGCAuk
New addition to this site!
Hi, and welcome.
No you’re not neurotic, unfortunately there’s still little information about PMR and GCA out in the big wide world. Many of us had never heard of either pre diagnosis, and that applies to GPs as well!
Some do get eye disturbances with PMR, but it’s usually connected to GCA - it’s nastier relative! However it could be side effects of the Pred, early days it’s difficult to know!
If the steroids are controlling the inflammation caused by the underlying PMR then your bloods should be in the ‘normal” range, but that doesn’t mean everything is tickity boo! You still have a serious illness.
Have a read of the attached, it might help you understand a bit more, and please come back with any questions, no matter how trivial they may be. If something’s worrying you - don’t fret - ask! Any time, we have contributors from the 4 corners of the earth!
Make sure you tell your Rheumy about your concerns at your appointment, and good luck.
healthunlocked.com/pmrgcauk...
Thankyou very much for your comments and advice! I saw my Rheumatologist who assured me that it didn’t sound like GCA, presumably from his experiences with people suffering from the condition. Meanwhile to continue on the 1 mg reduction each month. I was reassured with my eye test, although I have a cataract, double vision and floaters. I didn’t have signs of detached retina. Was told the prednisone probably accounts for double vision. It can be confusing when you have more than one condition! - eg osteoporosis, and diverticulitis, although the latter only gives occasional flare ups. Thankyou again, and appreciate your giving your time and advice!
Hi again,
Yes the Pred can cause double vision in some, and if you already have a cataract it may hasten it’s severity. Not always, but just be aware. Plus, I guess you are being monitored for that?
Unfortunately, many of us on here have other issues as well, and yes sometimes it’s difficult to tell what illness or indeed what drug is causing the problem. But as I said, there’s always someone who been in your shoes before and will help.
Take care.
Welcome Clarkb
I am glad you found the forum. It's scary trying to manage an illness that nobody seems to know about properly. Things can get a bit iffy as you reduce and if it's too fast symptoms can come back.
Regarding your head/eye issues. Pred can cause blurry vision as it spikes your blood sugar among other things. Keep watching it and do mention it to the rheumy. Dorset lady's overview is really helpful and I forwarded to fruendd and family so they could understand what I was going through.
Don't be afraid to ask questions I learn something everytime someone writes a post and from the info and advice given by others. 🌻
Thankyou for the welcome and your comments! So I’m not the only one in the world suffering from this condition that I didn’t know existed! I have to reduce by 1 mg a month and came down to 7mg. I never know what relates to PR, side effects, irregular heartbeat, high blood pressure, osteoporosis or current flare up of diverticulitis- dizziness etc. Have had another eye test, and have some reassurance despite some double vision. Most frustrating thing is the ‘before’ me and the ‘now’ me!
Yes it takes some getting used to. I remember being told it'll get better but I didn't see how then. But when I look back I can see a difference from last year. A few people have irregular heartbeat etc. If you can get that investigated it might help. Atrial fibrillation can sometimes be a part of PMR as I understand it.
I had heard of temporal arteritis which my friends late husband had but didn't know that was on the spectrum of GCA or PMR. At 7mg of pred you are now in the natural amount if the hormone your body would produce. If I have to stay at 7 or 8mg I will. It is different if you have osteoporosis but please see heronns post re management of it. I will try and put a link in.
Thankyou very much for your reply. I did have an ECG prior to this condition. It’s just that since being on steroids I seem to feel and hear the irregular heartbeats, especially in bed. Thankyou for the link!
Ahh yes...the before me, and the after me! Takes some getting used to, but hopefully with good management by you and your medical team you will come through the other end with another “new me” - slightly older and wiser but still able to enjoy life.
Have a look at these if you don’t believe me -
healthunlocked.com/pmrgcauk...
Welcome to the community, Clark. So sorry that you had to find us, but glad you did. You'll find that it's a blessing -- we have members that have become true experts in these diseases and are willing to share their experiences and what they've learned. You're in good hands.
Explore the site. There is a lot of information to be learned just from reading past posts. If there's a certain topic you are wanting information on, use the Search PMRGCAuk tab.
Also, never be afraid to ask a question.
Make sure that you discuss your vision changes and headaches with your doctor tomorrow. As Dorset Lady mentioned, Giant Cell Arteritis is a nasty sister to PMR. Some of the symptoms are changes in sight and a headache you can't get rid of.
Two things that I learned when I first joined that I think is important to pass on is: 1. Don't take your Prednisone and calcium at the same time. They don't play well if taken together. Take about 2 hours apart. 2. Low carb/ditch the sugar is a way of eating that will help combat those terrible steroid cravings, helps control sugars, and helps keep the weight gain down.
Regarding being tired and feeling low: Yes, that's normal. Try to get a nap when you can. Try not to worry. (Easier said than done, but this forum is a godsend and will help you in so many ways.)
Again, nice to have you join us.
Me: GCA/PMR diagnosed May, 2017. USA, female, 63.
Thankyou for your welcome and good advice! My Rheumatologist discounted GCA which came as a relief, as I read everything up about it and was convinced that I must have it. I do get very anxious on health issues which I know can make conditions worse. He suggested I had my eyes checked again because of my double vision, flashes and floaters. The test was reassuring in that although I have the above, I didn’t have a detached retina. I have a cataract but was told that it wouldn’t be considered bad enough to warrant surgery in the current climate of NHS appointments. I had to notice if there were any changes with floaters or an increase in flashes, otherwise an appointment in a year. Double vision could be down to the Prednisone.
Since I already have osteoporosis I have been taking additional calcium, but am somewhat reluctant to take bisphosphonates as recommended by my Rheumatologist. I have difficulty swallowing tablets and I understand they can cause throat problems. There has also been controversy concerning their long term effectiveness, in that they harden the bones but cause more problems later on. I am vegetarian and eat few dairy products as they create problems for my diverticulitis condition! I haven’t had weight gain- I am 7stone 13lbs, despite an increase in appetite! Can’t give up my craving for dark chocolate, but otherwise don’t intentionally have sugar.
At least the tiredness means I sleep at night, so far, as have always been an insomniac! although I still wake up around 6.00am. This forum is helping me feel less anxious, as this is in my nature. The tiredness I suppose is frustrating too because I usually go striding over the moors, and suddenly can only do so much and feel tired. I suppose it’s still early days. Thankyou so much again for your comments!
Search for posts by HeronNS. She’s our bone expert and you’ll find ways that she was able to increase her bone health. So glad to hear GCA was taken off the table! Keep reading past post, the more you learn the less anxious you’ll be, I think.
I am vegetarian too. Try tahini to supplement calcium too I stick a teaspoon in cooked food. I decided to take adcal but was having chewable ones previously. We have a few insomniacs and we all have had worries about GCA. I ended up at the walk-in a couple of times because if blurred vision and head oain. Pred can indeed cause blurred vision. Sounds easy to say but rest and relaxation us a key component of recovery for you and your muscles after activity. Dark chocolate good for you! I don't like it but it is a common treat for many on the forum.
Hope you are back to striding out soon.
DX June 2016 , PMR, currently going from 9mg to 8mg on dsns- various comorbidities.
Haven’t had Tahini for a while, but will try it again. I have prescription calcium carbonate, although I purchased Viridian calcium magnesium with boron in powder form. I’m really quite ignorant about supplements etc, but worried about the biosphosphomates!
Yes it's a big issue on here. Usually we advise dexa scan before agreeing the use of them. I took Alendronic acid 5 times over just under a year and had hip pain everytime. Scan was ok so advised adcal. My sister has taken it for 5 years without an issue with side effects. I only take the vitd3 and calcium because I was very deficient when DX and calcium to replace what pref effects. 🌻
My doctor said that I am not due for next scan until 2019. The previous one 3? years ago came up with osteoporosis diagnosis. Calcium seems to be included/added in many foods and drinks and with additional intake via tablets or powders I don’t know if one can overdose! I don’t buy dairy products. I feel quite ignorant about supplements too, as I tend to have a cocktail of them, taking them on an irregular basis without fully understanding why!
Just try and take any calcium supplement at least 2 hours post pred.
And yes you can get hypercalcaemia but usually through system leaching it. It is easily determined via blood test. I had some weird muscle weakness in my leg and had a test but was ok. I believe it was just my trapped nerve playing up. You do need to go to the pharmacy. Shoe what you are taking and get ensure its ok. My pharmacy very good.
Hi ClarkB, if you are in UK it seems the NHS is now saying we can only have regular scans every three years according to the lady who did my last scan. I had said See you in two years and she said Oh no you won’t!
Calcium can be checked as part of a blood test. It is possible to have too much - hypercalcemia. It is normally called by parathyroid problems though. Don’t worry to much about supplements, they drain your bank account. If you are found to be deficient or need them for other reasons fine, such as vit D and calcium to counteract the pred. Have a good diet, it is much cheaper and probably better for you.
Thankyou for your comments! The doctor put me on Accrete D3 tablets400IU (10 micograms) calcium 600mg (as calcium carbonate 1500mg) in each tablet. Don’t understand a word! I also bought beforehand, as an alternative viridian calcium magnesium with Boron, in powder form 150 gram powder, with recommendation to take one rounded teaspoon a day, which I have been doing. I’m aware that food and drinks also have it, either naturally or added.
I am mostly vegan, and eat healthily, and am aware that nut milks etc have added calcium or contain it naturally.
I
If you are on corticosteroids that should change the entitlement - they put you at risk (officially that is).
If your previous scan showed osteoporosis - what was advised then?
I was advised by the Osteoporosis Society and my doctor to take Bisphosphonates, alendronic acid. I haven’t taken them because I understand they could cause damage to the throat, hence standing up or walking for half an hour after swallowing. I have problems swallowing at times anyway. There had also been some controversy recently concerning their long term effects- in hardening of the bone but creating other problems.
On my visit to the Consultant last week, he recommended I took them. He has also arranged for me to have a CT head scan, although he felt sure I didn’t have GCA.
Not sure what makes him think a cranial CT scan will show GCA...
I have no idea. I wonder if it’s because I have been having double vision. I received the letter in the post, but he didn’t mention it at the time. I am totally ignorant about all things medical, due to a lifelong fear of such things!
Oh well - it will rule out a load of other things no doubt!!!!
My sister said she’s never known anyone walk into things and bang their head as much as me, so they might find things rearranged somewhat inside my head!
I got a letter from my Consultant today and he said that he’d arranged the scan because of my double vision etc but to ring him to cancel if I didn’t want to have it. I will though.
Regarding the CT head scan I had last week, I received a letter from my Consultant today, in which he said that my recent brain scan was completely normal. I am hanging on those words, but still not sure why I have double vision, although the tender left side of my head and strange sensations seem to be mainly gone. I have to see the Optometrist in a couple of weeks , so hopefully he can enlighten me.
Hello ClarkB and welcome to the site. I am sure that you will find it informative, comforting and even funny. I see that you’ve had some really good starter information already and I’m late to the party. Talk to us again when you’ve seen your Rheumatologist. The feelings of anxiety are very common. Prednisalone itself makes you feel jittery in the early weeks. Also you have a rare autoimmune disease, your body has let you down, so every symptom feels alarming. This forum holds your hand through it all, you’ll see.
Thankyou so much for your reassurances. I have mentioned above in replies concerning visit to Rheumatologist and opticians. Am working down the welcomes and friendly advice stream of comments. My immediate reaction to Prednisone was fantastic- to go from bad painful movement in my arm to being pain free overnight. However, other side effects? started to creep in as time went on, and wonder if this is directly related to Prednisalone. One problem I have, is that with my osteoporosis diagnosis you are encouraged to do lots of brisk walking, which I have always done. Now I seem to have little energy and weak legs which doesn’t help that condition. Do feel somewhat jittery and not a part of things , if I am out shopping etc, and little motivation. I am hoping that as the dose lessens all this will get better instead of worse! Thankyou Jane
This site has been terrific and has helped me and my Doctor!!
Hi ClarkB,
Welcome to the Club, I have found that information is thin on the ground at the Doctor. I started last September, and my eyesight change, but slowly retuned to normal as I reduced the Steroids, I am down to 4mg. Hard work..
Keep an eye in the flashing, It can mean other sight problems, but I am sure you have Google the symptoms. Google was the only I found out about PMR.
Good luck we are all here to help, and you are not on your own.
Frederick (TimeLord)
Thankyou very much. Have seen the Rheumatologist who has discounted GCA and the Optician has told me to watch out for changes in my vision regarding flashes, floaters etc, and that double vision could be down to Prednisone. Now on 7mg, but started with 15mg Feb. Thankyou again!
Do mention the head and eye pains to the rheumatologist. PMR can be a symptom of GCA, it's more serious cousin, and that can cause visual problems and headache and develop at any time.
Hi Clark im christine.I was diagnosed in October 2017 with PMR.I was put on low dose Steroids.I was ok then in January 2018 i started having right sided headache by my right temple.I was in so much pain.In February couldnt lift my head.Was sent to Opthalmergy as urgent.Had a urgent biopsy done which showed i had Temporal Arthritis which showed i had inflammation of the artery .They also said it was inconclusive if i had a more serious condition.GIANT CELL ARTITERIS.This can cause me to loose my vision.I have been having blurry vision and seeing double.They have told me what to watch out for.At least i know what was causing my headaches.Only draw back is the treatment for Ta and Gca is high dose steroids.I didnt want to go on Steroids.My Dr said only treatment for Pmr Ta Giant cell artiteris.Speak to your Doctor he might refer you to the opthalmagists.Dont delay.Let me know how it goes.
A rheumatologist is actually the more usual speciality for care in GCA. Temporal arteritis is the same thing as GCA - it is just the temporal artery is the only artery they can use to have a look with a biopsy.
Thankyou Christine. I didn’t have the severe pain you had in your temple, but nevertheless it was there and the rest of my head was tender and throbbing. My headaches were frequent but not constant. However my Rheumatologist has discounted GCA. I still have blurry and double vision, but the Optician put it down to the Prednisone. I had a thorough eye test to check out other conditions.
i often wondered if anybody had the swelling on the superficial temporal veins along with the symptoms of GCA/PMR? I recently had a flare and noticed the swelling along with the scalp pain as if the head had been bruised extensively. I never had a biopsy, by the time I saw a consultant, I was already on pred/immunosuppressive. A bad timing. GP delayed a referral.
Me! Popped out and beaded. GP and her Resident/Intern even touched it during my appt for the beast headache. Their response: hmmmm. Although markers raised, diagnosis was missed as focus landed on high blood pressure. Fortunately. I showed it to a Psychiatrist I know two weeks later when she asked if I’d found relief with the headache. She knew instantly what is was and put in motion fast-track treatment. (GP was very apologetic; I was her first patient to present with this. Bet she’ll not miss it again.)
Hope she doesn’t - I had one as well, but mine was slightly more serious. Enough to warrant a “serious incident” investigation at the surgery. Lessons learned - we hope so!
I saw her a few months later for diabetes check and she told me that she had referred someone else to rheumatologist as suspected GCA. Turned out not to be but she’s taking no chances. She has been a really good doctor in all other matters and I think that really shook her. Wish yours had been diagnosed earlier.
Hi,
It was kind of you to reply to my post.
Is there any "medical name" of this "superficial temporal vein beaded swelling" if you don't mind me asking this? Apart from you, insight329, nobody else managed to reply to my post. This made me wonder if this is a fairly unusual manifestation? I almost anticipated someone would say, "oh, I know it sounds like fibro".
GPs are notorious for their famous "dismissing what they do not know" as if they know what it is and put our lives/vision in danger. It's a bad habit.
DL just replied, too. I have no idea on the medical terminology. In fact, I thought, ‘oh that’s what it’s called’ when I read your question. Thanks for educating me.
I really appreciated your input and sharing your experience on this. Really kind, thank you. 
Hi anothermember,
if you have a specific question it’s best to raise a post yourself, that way everybody gets notified of it. If you just ask in response to someone else’s thread, only the person you’ve replied to and the originator of the post see it - unless someone’s ticked the ‘follow post’ box.
Sorry can’t help you, but I’m sure someone will, so ask the question.
The only thing I could find was - phlebitis- and then it’s usually the legs affected.
I'm just wondering if you could possibly kindly post this query on my behalf at all? I have not been feeling poorly with this swelling I had. TIA. Kind Regards,
Okay will do
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