Found doctor in Orlando, FL who specializes in PMR

Hi Flutterbie57.  Do read my reply to audrey re the headaches, would be interested to hear what yours are like too.  I think we are all terrified of gettng GCA

My headache is from temple to temple - its mild but constant and occasionaly I have a few niggly stabs. My eyes have been getting blurry at night for months. I have had my eyes tested at the Optometrist 3 times just before I was diagnosed with Poly. Their tests were fine. I tell my Dr  every time I go, but he isn't concerned. I have decided to push to see a Rheumy and I will take my husband this time as someone else suggested 

It is a problem that all of our symptoms could be side effects of pred, so until or unless something more dramatic happens, I suppose no doctor can categorically say whether we have an early stage GCA. Or whether we have nothing  to worry about.  I find it very difficult to pit it to the back of my mind when it is there nearly all the time.  

I think it is a very good idea to take your husband with you.  Let us know what the rheumy says and how you get on.

Hi Audrey.   I also have been having headaches for 8 weeks now.  They tend to move around my head a bit, but always end up on my right temple. Sometimes I get little stabbing, niggling pains in my temple too.  I have had my eyes checked regularly, last time yesterday and was told the optic nerve looked healthy.  Got home and had a sudden pinky film across the top of my eye which faded after 10 minutes or so.  Went to the doctor who said it all still looked fine, my eye was still dilated.  But my temple was quite tender to the touch and he said that he accepted that I had an inflamed temple artery!  I asked if I shouldnt raise my pred dose up from the 8 I am taking now.  But he said not at the moment, he would speak to my rheumy first.   I am constantly worried about my head aches and am sure the stress is not doing me any good.  I am sorry to hear that you have a similar problem, but its comforting to know that someone else can understand how I am feeling!   Also, i nearly forgot.  My doc also said that I couldnt get GCA because I was on pred.  i told him that wasnt true.  Not sure if he believed me.   Does my description of the headaches match yours?

Hi Jan,

Almost exactly!  Sort of like prickly pains mostly on the right side and roams around.  My temple is not sore to the touch.  I also had my eyes checked and everything checked out good.

i am wondering if it is a side effect of the pred.  I will also get a second opinion about  not being able to get GCA while on pred.

im sorry you also have this stress but it is comforting to have someone to discuss it with who fully understands.

We do seem to have a similar problem.  I remember when I First went on pred Last September I did have what I called 'weird sensations' in my head which moved around.  Then they stopped.   They are back now but stronger and definitely feel prickly!   Then when it moves to the temple area it feels more like an ache.   My doctor says a lot of it is stress.  I am going to have some very (underlined!) gentle  physio this afternoon.  I will let you know how I feel afterwards !!   How long have you had PMR and been on pred .

Hi Jan and Audrey,

I don't think you're getting a response from the ladies in the know about GCA because of the subject of this particular discussion.  I don't have GCA but think you'll find that you can definitely get GCA when on the lower doses of pred.  There has been other discussions on it here on the forum.  Many of the other members either have or did have GCA and it's not something to take lightly.  Sorry and don't want to stress you out unnecessarily but you can lose your sight.  

Maybe start a new discussion with your symptoms and concerns and refer to this discussion for anyone that can help you.

I hope you both get answers to your concerns soon.

Hugs, Diana🌸

Thanks Diana

My new rheumatologist spent a god hour with me and covered pretty much everything.

Referring me to a neurologist for headaches just as a precaution I am back up to 20 and will stay there for a month and drop 1 mg after that. Don't have the chart with me right now so can't tell u exactly

As for the headache he doesn't believe it is

GCA but he will be watching closely

Hi Diana, 

thanks for your concern.  i saw a rheumatologist last week about my headaches.  She said just to keep an eye on things.  I have already seen two neurologists as well.  They all seem to thnk you have to have a really bad headache to have GCA.  Its very frustrating and I sort of wish they had putmy preds up as Audreys rheumy has done.   Although I get so many side effects its the last thing I really want, but preferable to having to take 60 or 80mg if it really is GCA.  Having seen the eye specialist yesterday I was reassured when he said it all looked good.  

Hi Audrey.   I am so pleased for you, It sounds as though you have found a really good rheumatologist.  Did he put up your preds because of your headache or the pain or both?  I have already seen 2 neurologists, but they didnt fill me with confidence.  What dose of pred were you on before ?   

"he will be watching closely"

You honestly can't expect much more than that. The fact you are back up to 20 suggests to me he wants to see if that improves things. He sounds thorough and helpful which is good.

Really, it is impossible for any of us to express an opinion one way or the other - what we can do is tell you to go to a doctor under certain circumstances. What you are both describing COULD be GCA - or it might not be. So telling your doctor, or keeping details are a good idea. If you have ANY visual symptoms that is a sign to get in contact with your doctor asap - or go to the ER - whatever they are. No 2 people are exactly the same - and you can have GCA that doesn't affect your sight. Then a dose of 15-20mg is felt by most doctors to be enough to manage the symptoms. The very high doses are to try to avoid visual loss because they want to reduce any swelling very quickly. But that is why doctors seem to be prevaricating - they want to avoid giving high dose pred unless it is really needed, you can't really give above 20mg unless there is good reason because of the side effects.