Is it temporal arteritis?

[bonnielm1]

Last month my sed rate was at 34 and my C-reactive protein was at 2. My rheumatologist raised my prednisone from 4mg to 5mg and said I will see you in 6 months. Now I just moved 180 miles away and am trying to get some new doctors. This may take awhile. I started having a stiff neck and a little pain at the back bottom of my head a few days ago. Do you think this could be the temporal arteritis? I was going to wait a few more days to see if this goes away. Two years ago when all of this started, the pain was by my ear and up to the temples. I am not having any pain by my temples. Only the neck and the back of the head hurt.

[SheffieldJane]

I am not clear whether you already have a GCA diagnosis. If so and you recognise these symptoms I would be tempted to go to Hospital whilst between doctors. If it is PMR ( I have that and pain in those places) it may be the stress of the move and you need a little more Pred to get you through. If in any doubt go to the emergency room or A and E if you are in the UK. Better to be safe than sorry. I cannot interpret your bloods.

[DorsetLady PMRGCAuk volunteer]

Hi bonnielm1,

As Jane says you don't say whether you have GCA or PMR, nor how long you've been on Pred - which would help in our replies.

ESR reading of 34 is quite high when you are on Pred - but is this wildly out out of your normal range? Guess so, otherwise Rheumy wouldn't have increased dose.

Quite possible that the pains are down to stress of moving, and adding another mg may help. Is there any way you can contact Rheumy dept and seek advice, if not then local A&E if really worried or NHS helpline.

[bonnielm1 in reply to DorsetLady]

Thank you DorestLady and SheffieldJane for your replies. I decided to go to the urgent care and get a blood test. While I was there they also gave me a prednisone and B12 shot. I will see how the tests are then I will call my doctor out of town with the results. Two years ago I was diagnosed with GCA. Started on 60 milligrams and trying to come down ever since. Last months readings were higher than they have been in over a year. So I will have the results back tomorrow and will call my old rheuma out of town and see if anything needs to be done. I feel a little better now. Thank you

[DorsetLady PMRGCAuk volunteer in reply to bonnielm1]

From my own experience of GCA, I would say that at 2 years down the line it is probably still fairly active. If that's the case, then 4 or 5mg is probably not enough to control the inflammation caused by the underlying illness. Your rising readings would confirm that- in my mind anyway.

FYI mine lasted 5&half years, and I thinks that's not partularly unusual.

Take care.

[bonnielm1 in reply to DorsetLady]

I called urgent care today to get my blood results from yesterday. My sed rate was at 54 and the C-RP was at 84! I told them I never had the CRP that high and the sed rate was not that high in a long time. The lab is going over the tests BUT WILL NOT KNOW ANYTHING FOR A COUPLE OF DAYS. Well they sent a copy to my rheumatologist in Florida but he will not be back until Monday. I had a PREDNISONE shot yesterday after the blood work and had another one today (125mg) so maybe that will help it until Monday. My pain has gone away. So I hope it helps. I took 2mg extra on my prednisone. My vision is ok and no headaches.

[DorsetLady PMRGCAuk volunteer in reply to bonnielm1]

Good. Let's hope the lab made a mistake somewhere along the line. Quite possible, especially as you have no symptoms, but a worrying weekend though.

Please let me know outcome.

[SheffieldJane]

Good luck with all of it. Moving is so stressful on every level. I hope it is a happy choice for you!

Glad you went to urgent care!

[ipsydipsy]

On the question of raised sed rate, I noticed on the last 3 bloods I have had done the normal range has been quoted as 35 whereas before it was always 20. Has anyone else noticed this? When I asked my rhemy he didn't know why (not surprising).

[PMRpro Ambassador in reply to ipsydipsy]

Bizarre - unless they have changed their minds yet again! 35 was what they said for a long time on the grounds ESR rises with age. Then it was decided that if it was raised in older patients it wasn't because it naturally rose with age but that it was a sign there was some undiagnosed inflammation going on and they put it back down to the lower level they used for younger patients.

It wouldn't surprise me if the powers that be have decided there are too many abnormal results using 20 as the top of range and they've raised the bar to make us healthier...

Cynical? Moi?????