I have had PMR for almost 3 years. I also have other issues (some hereditary and some due to medications) High Blood Pressure, osteoporosis, Inflammatory Arthritis, Meddulary Spong Kidney (kidney stones) and depression.
What I have not been able to find is the symptoms of GCA other then the fact that headaches and temple veins maybe visible. etc. I have had 2 events that have given me so much pain in my head that my blood pressure went up to over... 160 over 110.The triaged me thinking I was having a heart attack. I am 52. My eye sight was very blurry and the pain wouldn't let up after several hours. I was taking 15 mg of prednisone and neproxen at the time, along with several other medications. There was a spot that felt like I had been hit in the top, back part of my skull. After 3 hours I was told by an intern to go home and put my glasses on. "You dont have PMR or GCA...if you did you would be bed ridden" I left crying. Over a few days the pain subsided and over weeks my eyes started clearing again, but not to the same as before. A few months passed and again the headache came back but not to such a degree. I had another spot on the side of my skull which felt like someone hit me on the head again when I touched it. My eye sight messed up really blurry. At times I have had headaches which cause the vessels over my temples to kinda stick out, but they were not that bad at this time. This too passed. I told my Rheumatologist but it was dismissed because the headache had gone away after a few days. My eye sight took another downward turn, but again returned. I have had one night driving without any headache and all tail lights and street lights had a halo. Dark in the middle and the light was around that dark spot. Pretty, but freaky. This passed that night. Since then I have had nagging headaches off and on, but not bad ones. I have had bouts of real blurry eye sight and my near vision has deteriorated at least 2 levels. Eye Doctor said he couldn't figure it out. The last week I have had a pain in my jaw and mild headaches, which maybe that tjm or what ever it is. Just that this has come and gone and they say it doesn't do that. It is constant and doesn't let up. Thanks if you can shed some light.
Take Care and God Bless
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Sharonsspot
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You need to find a new rheumy and fast !! Your symptoms are classic GCA.
When a PMR patient has those symptoms, the Rheumy will nearly always do two things. 1. they will order an esr and a crp to check your inflammatory levels. Meantime a decent rheumy will put you on a high dose of prednisone.. generally around 40mg at least to protect your eyesight.
I was diagnosed with PMR in 2006, I'd had it for some years at that stage without knowing what it was. Then I was diagnosed with GCA in 2010. With it I've had shocking headaches.. head "pains", eye pain, blurred vision, some vision loss, and mostly ( but not always), the scalp tenderness (in varying places).
After living with GCA for a year and a half, I have come to an understanding with it. At the first sign of serious GCA symptoms, I take a big hit of prednisone. In part to protect my eyes.. and in part as a diagnostic. If the pred fixes it.. then I can be sure it is GCA. I have a wonderful rheumy who guides me, but trusts my judgement. Over the years I and a lot of my PMR friends have come to see that we must be our own health advocates, and that there are some bad rheumy's out there. A good rheumy will be open to input from their patient, and will accept that we are the specialists regarding what is happening in our own bodies.
What is happening to you is not good enough. You are going to have to be a bit of a warrior and INSIST that you get the treatment that you need. Please also note that a negative temporal biopsy does not preclude the possibility of GCA.
Don't forget the other major symptom of jaw pain, so dreadful that it is difficult to eat. Except for the normal PMR symptoms of pain in the shoulders etc, the only other symptom I had was the pain in my jaw. All this went undiagnosed, despite ESR being 126. Told to go off to Spain and enjoy the sun!! One week later in Cordoba hospital and lost the sight in my left eye.
Absolutely Lizzie. Here at PMRGCAuk we feel a dilemma, because PMR is bad enough without scaring people witless about GCA as well, and what we want to be about is providing support and reassurance! But in cases like this, there seems little doubt that something else is going on. Rheumatologists often check out for GCA when PMR is diagnosed, but don't keep checking for it once the PMR is under treatment. And yet there are a lot of us who complain of occasional bad headaches and vision disturbance, although it doesn't flare into the screaming pain in the head that acute GCA creates. Also there is the question 'if I am taking steroids already are they providing me with a level of protection, so that even if I have got GCA symptoms I don't need to panic'? We just don't know. We need a lot more research about what patients experience on their PMR journey. So many doctors seem content to prescribe the pred and leave it at that.
And yes, you are right, more often than not (in the UK) the biopsy is negative even when the consultant is convinced that GCA is present. Those pesky giant cells can be evasive!
Thank you so much Kate and Lizzie. Kate, your PMRGCAUK site has been such a gift for me. I have posted information to help others from your site and it has help immensley.
Good luck and good health to all founders and members !!! Soon be the vernal equinox 20 March .Maybe "things will improve"for all of us !Waited 25 years to be diagnosed with Crohns and PMR .!!!! What is needed to diagnosePMR isESR and or CRP test(blood).Details of tests on web .Steroids for it -sorry to say,but effective.Low as you can manage plus Paracetamol when needed on advice from Dr.Was sick of telling Drs .-all very lovely though over the years that "it hurt when I pulled a single hair in my plait etc etc and great pain in jaw and more........"Boring !"poor soul ,maybe she s imagining it " You must Keep repeating the same story .Oh joy .PMR is along term thing and every medication advice .pretty well is prednisolone .Tried and in use since the 80 s.Hope this helps .Stay warm.eat sensibly and walk each day ,whether you want to or not .Also sleep and not too much physical stuff .No cigs.No booze no slow horses or fast women or men !!!!!!A convent ??????Hugs xxxxAsk me anything .!
Hi Soojay, while I have been recently diagnosed with PMR, I have nagging fears of the prognosis, and on reading that you have been on steroids since the 1980s, I am a little concerned really as I have read on the web that steroids are a 1-3 years slow fix of this condition which will "eventually burn itself out". Maybe not after all or do you have to take them for other conditions as well?
I try to walk each day, my head wants to but my body doesn't!
I recently got married again after 20 odd years so I can't give up now, but the cigs and wine hit the road about 4 years ago luckily. Any other health tips for me? I would welcome any do's and don'ts on the food front, having a wheat and various food intollerances (bad immune system?) I take antihistamine daily just so I can eat fruit! Have you read or experienced any foods that are to be avoided?
You mis understood . Prednisolone has been around since the 80 s .I can see that you are anxious .Please dont be .It will be o.k.Lost blog to you .I am mad and tired.Will blog about medication later and food .Worked with long and short term illness for a local authority for many years but not Dr. but with all agencies -hospitals ,Education,home,shrinks,social services -etc.Basically I am a bossy know all !!!!!!!!Laters .Hugs x
I meant that I wasn t a Doctor ,but I did work with them .I m afraid PMR is a long term thing ,and the best you can do is try to achieve a"maintenance"level on whatever is deemed suitable .I believe the aim is 7 point 5 mgs daily .It is considered a low dose of Prednisolone .Can top up with Paracetamol .Does not contain opioids like Co codamol.All for now .On a jolly tomorrow with daughter to Hotel .xx Will do food another time .
Hi Sharon,well when i was reading your post i thought at first i was reading mine except my guy at Harrogate has been brilliant with me for the past two and a half years,like you i have the headaches and raised veins and i even had an op a year ago for GCA with negative results which i was told it maybe could have not shown due to the amount of steroids i was on,i keep coming down and when i get to 10 mil the attacks come back but late December i started on Methexotrate and hopefully i will be able to get down to the magic number of 5 mil,it does take a while to work but it will be worth it if it does,try and see if you can get a different rheumy like like Lydybeff suggests.all the best for the future. mick
Sounds to me as if you have GCA. I was diagnosed in December after having experienced what I thought was the worst sinusitis pain ever - nothing alleviated it. I also had various pain spots on my scalp which hurt when pressed. Earlier last year I also had jaw pain when eating but this went away, my neck constantly ached as if I'd been in a draught and I lost a stone in weight. When after 2 wks of being treated for sinusits the muscle aches started I went back to my doctor and told her I thought I had PMR - my mother had pmr for 20yrs! so I knew the symptoms. I had a blood test the crp was 100 and I started on pred straight away. You must be very careful of your eyesight if you have GCA. i THINK YOU NEED A SECOND OPINION
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