Is it early stage GCA or Pred side effects

[lizg0017]

I was diagnosed with PMR late February of this year. I’m taking 20 mg Pred daily. Seems lately I’m getting tingling on the sides of my head above my ear. And my right outer ear tingles. No pain, just tingling. My temples seem to spasm or tingle also. No scalp tenderness or jaw pain. Is it GCA? Or something else. Thanks. Any input would be appreciated.

[Hidden]

Hi lizg0017, I am not sure, but I do have GCA and I did not experience the tingling... I had only PAIN. I went from nothing, to a blazing, never-ending headache; but than again, I wasn't on Pred at the time. Hopefully the "experts," can shed some light!

Good luck!

[lizg0017 in reply to Hidden]

Thanks for your response. So pain seems to be the culprit, not so much tingling. I could have something else going on like pinched neck nerve or whatever. And yes, I'm working with my Rheumatologist closely monitoring my CRP and symptoms. I was just concerned about the odd tingling. Thanks again for your quick response.

[SnazzyD]

Difficult to say. With hindsight my early signs were tender scalp and waking in the mornings with earache, very slight tenderness in the temple I mainly lay on and pain in the base of the skull in a slept badly sort of way. It cleared up by the time I had breakfast. Then suddenly pain kicked and rapidly accelerated to a burning sensation in the side of the head, more on the surface rather than brain. A few days before, I had black spots in my vision only when I was working very hard on my bike but they quickly went as I got my breath back. Or everyone has exactly the same symptoms.

You could mention it to your GP but they might want more symptoms to justify upping your Pred to GCA levels. Did your blood inflammatory markers rise with the PMR, if they did, have you had them done recently to see if they’ve gone up? Mine were never raised according to the scale but they were raised for me. If you have any new eyesight problems like blank spots, hot foot it to ER/A&E, because if the eye arteries are affected you need treatment quickly.

[lizg0017 in reply to SnazzyD]

Ok thanks so much for your response. It's good to hear what symptoms others felt at onset of GCA. My CRP was 0.2 six weeks ago and is now 1.0. So not bad but still rising a little. I will make myself aware of any vision issues and headaches so I can get to the doctor as soon as possible if needed. Thanks again.

[PMRpro Ambassador in reply to lizg0017]

If the CRP continues to rise - there is something going on and the pred dose isn't enough. If you are still at 20mg - I doubt it is PMR so be watchful.

OTOH - tingling could be other things although poor blood flow to the local nerves due to GCA is one possibility. Anything else you notice? Whether you think they are typical GCA or not...

[lizg0017 in reply to PMRpro]

Thanks for your response. The CRP is low, so that's a good think. It could be feeling side effects from Pred? Or I could be over sensitive to thinking it's GCA. All I know is I felt better on 25mg than I am right now on 20mg. My Rheumatologist just order MTX for me which I am starting today. ugh. Seems I feel worse with more achy symptoms, tingling, temple throbbing,arm aches, later in afternoon than in mornings.

[maria40]

I had tingling at the back of my head and on my scalp as well as my other symptoms of GCA - temple pain and jaw problems. I'm reducing at the moment and had a minor flare a couple of months ago which manifested itself as tingling which started at the top of my head and went right down my spine. Though with my initial diagnosis my then GP dismissed the tingling as not being related to GCA, neurologist confirmed it as such. Certainly worth getting it checked out I think.

[lizg0017 in reply to maria40]

Ok, wow, thanks. Seems each person has different experiences. Guess if my symptoms continue or get worse, my Rheumatologist said for me to just do the biopsy and then I’ll know. So scary. Thanks again for your response.

[PMRpro Ambassador in reply to lizg0017]

Except you won't - the TAB is 100% surety when it is positive. If it is negative it just means they didn't find what they were looking for - the giant cells that gives the illness its name. It may not be affecting that bit of artery, it skips areas so if they get the wrong bit they see nothing. It depends on the skill of the surgeon and the pathologist - and a load of other factors. So don't let him convince you a TAB gives a correct result.

[lizg0017 in reply to PMRpro]

Wow, good insight. Thank you for your response.