Does anyone have GCA with normal bloods

[Runrig01]

I know from the research that 4-7% of GCA patients can present with normal bloods. I am interested to know if anyone here falls into this category. If so were your symptoms severe or was the headache and other symptoms bearable? I have written a blog about my recent experiences.

[bowler]

I was diagnosed with GCA aged 54, [ I'm now 68 ] My ESR wasn't concidered that high at the time at only 34

My artery biopsy was also negative, but this can happen if you are treated straight away with steroids before the biopsy. However they came to the conclusion that due to my symptoms I did have GCA I also have PMR. but dont get so many flares of that.

My headaches where really bad, I couldn't even put my head on the pillow, It hurt to comb my hair, and even the water from the shower on my head was painfull. I never get any real jaw pain, but I do get some clicking noises from the jaw , mainly in the mornings, but not very often. I somnetimes have ear pain.

I also felt quite ill, with night sweats, lethargy, depression. etc., etc.,

I am at the moment having a flare up of GCA and PMR due to I think a recent kidney infection and I now have a chest infection, which probably has set off this flare.

I am still contemplating whether or not to have the flu jab this year as I usually get a flare after that, which sets me back a bit, and it's a case of upping the dreaded "devils drug" again.

I am now back up to 30 mgs. Prednisolone. So another long taper.

[Runrig01]

Thanks for the prompt reply Bowler. The thee symptom I have which I forgot to mention in my update blog, is the left side of my tongue twitches occasionally and it makes an annoying clicking noise when it does. As I say it is not painful but irritating and has stopped me sleeping on 2 nights. I am reassured I don't have the severe pains you describe, just constant dull ache in both temples. Thanks again

[2watsons]

Hi i had PMR some years ago cleared up then almost a year ago ,felt not to well thought i was going to have cold ,no sore head ,had ear ache jaw felt tender , i lost sight in one eye over night due to GSR was seen next morning Blood ESR

[2watsons]

Sorry hit wrong button ,Blood tests where up a little but not alarming biopsy was normal ,it was quite a shock at the time still is some days ,now reducing predisolone one 7,5mg I am 78 ,hope of some help .

[Celtic PMRGCAuk volunteer]

I haven't come across anyone with GCA who didn't have raised ESR and CRP blood test markers at the outset......yet!

However, Arthritis Research state in their booklet on GCA: "In most cases, ESR and CRP are high in people who have GCA".

At diagnosis of GCA, my ESR was 46 and my CRP 65 and my symptoms severe - fever/night sweats, nausea, vomiting, facial swelling around eyes and inside mouth with me constantly biting the inside of my cheeks, head, eye and jaw pain on chewing. During an undiagnosed illness the previous year, my ESR was initially 92 and CRP 157 - that illness was now known to have been PMR.

[bowler]

I thought that an ESR of 11 and CRP of 2 was rather low to suggest GCA.

My ESR was concidered low, at 34. at the onset, However I am having another bad flare this time with GCA and also PMR and my ESR is only 29 CRP 8 but I've never have had a high reading. [ probably why in the first intance my Dr. was treating me for tension headaches, and depression ] It was a Locum who diagnosed me, and sent me to hospital.

I tried 20mgs, of Pred. but my headache didn't respond to that. I upped it to 30 yesterday and that seems to be getting my symptoms under control. The PMR went instantly on 20.mgs, but not the GCA. Why do these things" flare up" over a weekend or bank holiday when surgeries are closed?

It amazes me with this disease how we can have the same symptoms but have different blood/results/numbers. I read that someone with GCA had an ESR of almost 200!!!

Celtic. Your ESR and CRP was very high, you have done so well to get off of the "devils drug" I live in hope.

[piglette in reply to bowler]

I had a CRP result of 415 after a hip op and I just have PMR. They did not test ESR.

[Hidden in reply to piglette]

Hi piglette...did you realise the post is 6yrz old. ??

[piglette in reply to Hidden]

I wonder why it came up as a new post on my notifications. Oh well!

[Hidden in reply to piglette]

Thought it wasn't like you. Maybe hu stuff or someone else posted and deleted?

[piglette in reply to Hidden]

Interestingly enough someone else replied to a very old post today, I wonder if there are gremlins around!

[Hidden in reply to piglette]

Yes I notice that. I think weird and not so wonderful things are happening!

[Celtic PMRGCAuk volunteer]

Hi bowler - do stay positive and carry on "living in hope", although I can imagine how frustrating it must be to suffer for so very many years with this painful condition. I thought my 5.5 years was long enough! It is very unfortunate that infections have got in the way of your reductions, especially as continuous yo-yoing of the steroids doesn't tend to be helpful in the long run. I tried so hard to avoid infections and always stayed away if I thought friends were going down with something, and swore by my daily fresh lemon juice, live yoghurt, garlic and Manuka honey, plus the required 5 daily servings of fresh fruit and veggies to try and boost my immunity.

If you can get the inflammation under control quickly with the increased dose, then once your chest and kidney infections have completely cleared, hopefully you will be able to reduce back down to where you were in quite a short time. Good luck.

[Hidden]

Prior to starting steroids for GCA and PMR my CRP and ESR were normal i.e. 2 & 4.

Fortunately my GP looked at my symptoms and I commenced on high doses of pred.

I have had both conditions 3 years and I have been yo - yoing with pred. Tried Methatrexate but did not help, also have had chemo. The GCA reared its ugly head when I got down to 9 mg day. I had severe head, jaw pain and blurred vision. Had I.V. Pred x3 then high doses ( oral ) now on 40mg pred but still experience head pain, temporal area often soft and tender.

The side effects of this has resulted in Diabetes, glaucoma and cateracts but my arteries are clear.

I have always visited eye clinic to check whether GCA is damaging siight. This is also useful to assess if steroids are damaging eyes.

These are really frustrating conditions as I can feel different from one day to the next, the worst symtom for me is fatigue.

Hope you feel better soon.

Maryjayne

[Runrig01]

Oh dear Maryjane you really have had a rough time, hope it settles soon. Glad to hear you have a GP who treats the symptoms rather than just the numbers. I am currently on 9mgs, and my rheumy suggested I stay there till I see her on the 1st May. I tried reducing from 9mgs to 8mgs early March and had a flare, so returned to 9mgs. I am concerned the Jaw cramps I get will worsen when I reduce the dose, the pain in jaws is severe. She has suggested taking it slower with 1/2mg drop next time. I have contemplated taking a low dose aspirin in the hope it may provide some protection whilst I wait to see her again. I visited an opticians in Jan and had thorough assessment, which was normal. I certainly don't get the severe head pain you all describe, just a constant nagging pain, which has been there for about 3 weeks. Rheumy did check for tenderness, which it is not particularly, and said she could feel pulses in both temples, the left more thready than the right!. On the whole I have more good days than bad, generally bad days are when I have overdone it the previous day at work usually.I take a slow release Vitamin B which seems to help with the fatigue. Hope you feel better soon too.

[Hidden in reply to Runrig01]

Hi runrig01

Thank you for your reply. I am seeing G.P tomorrow and I shall mention Vit B as I am also suffering from muscle weakness and see what is suggested. A very frustrating illness, I am 55yrs age, often feel about 90 !!!

Good luck

Maryjayne