The most significant early warning I had of the acute temple pain was a few days of having a very tender scalp. Using a hairbrush or disturbing the hair, was extremely difficult as the tenderness was so severe. After four or five days of this, the symptoms stopped and a night or so later, the temple pain suddenly switched on. I mean suddenly without warning, from nothing to really strong. Since that time, I have never had the tender scalp again, but the temple pain is always there to some extent or other, (about three months).
It would be interesting to know of any other GCA sufferers with tenderness of the scalp at any time during or preceeding their head pains.
Hi
I had these symptoms many times and saw Gp who sent me to hospital for check-up. Saw registrar who felt my temple and said "well you have a pulse!" and dismissed me! I was then diagnosed with migraines. The pain in my temple can be excruciating and trying to wash and brush hair can be tear inducing. Funnily though, that I've started to lose sight in right eye so am having injections for it. I was diagnosed with PMR 4 weeks ago after been mis-diagnosed with Fibromyalgia for the past 6years. My Gp prescribed steroids as a trial as she thought I was having a fibro flare up.... The difference they made has been sooo dramatic (I can now get out of a chair unaided) that she's agreed that I've probably had PMR these past 6 years. Not sure about the eye, though. At the moment feel so good that I dug out a veggie bed yesterday....bit silly me thinks!
Having temple pulses does not exclude GCA. It can affect other arteries in the head, what you describe is classic GCA. If you are losing sight in your eye you need to go to A& E asap. I had the burning in my temples for 2 years, along with jaw cramps and tongue problems. The tenderness in scalp only really happened in Jan this year, which is when they started taking my problems seriously and diagnosed GCA. Scalp tenderness has subsided, but burning temples persist, but due to being on low dose steroids for 2.5yr I have to manage the GCA symptoms rather than increase to high dose steroids, so some symptoms continue
Moon maiden please go to A&E and get checked out, better safe than sorry. Take care Runrig x
Just wanted to add to runrig's plea - whatever injections you are having (Lucentis??? maybe) won't do anything for GCA. Please go to a doctor immediately and ask about GCA - as she says, presence of pulse might suggest the temporal artery isn't severely involved yet but it certainly doesn't rule out GCA. And the PMR dose isn't high enough to manage GCA that is affecting the eyes - though doctors may tell you so.
Thank you for being so supportive....I really appreciate it! I have been having Aventis injections in my right eye. Its been stable for 6 months but the eyesight is going again. The eye hospital said that my eye is leaking blood which is 'pooling' underneath my macular. I am on 12mg of pred and doctor wants me to go down to 11mg in a couple of weeks time.
Off to eye hospital soon so will mention it to them.
Unless "soon" means the next day or two I'd suggest you call them and ask for an urgent review or go back to the GP and tell her about the registrar who doesn't know what he's talking about. Today!
Thank you for your replies...it's great having someone 'out there!' as I was beginning to think that I was becoming an hypochondriac! Although the pain in temple area and tender scalp is on my left side, it's my right eye that I'm having a problem with! Bizarre!
Hi Moonmaiden1,
Would totally agree with runrig01, you need to get your eye checked ASAP. Your story sounds much to close to mine to be comfortable. See my second post to Megam's post "To vaccinate or not to vaccinate".
I may be over-reacting, but please be aware of what can happen. Best wishes, DL
Hi DorsetLady.
I am also in Dorset! interesting how our stories are similar? Hope you are well and your PMR is stable.
Regards.
Hi. Yes my GCA is controlled ok. I say GCA rather than PMR because it seems that shoulders and head only are affected whereas my lower half and the main muscles around joints etc are ok. Apart from arthritic knee which although associated with immune system is different!
I only live about 8 miles from coast and am out and about every day. That's what keeps me going, we really do live in a lovely part of the world! Take care of yourself. DL