So is this GCA?

Hi, I am new here and find extraordinary comfort in reading the experiences and advice of fellow sufferers. I took the initial diagnosis of PMR very lightly, thought a few months on prednisone couldn't be all bad. Six months later I believe I have developed GCA, along with a lot of humility. I have been experiencing neck pain, increasing in intensity over The past three weeks. My doctor did an x-ray, chalked the pain up to some arthritis,had me up my prednisone to 20 mg and gave me pain medication for sleeping. The pain medication did nothing and it was only then that I discovered – having woken up nightly at 2 AM with excruciating pain for more than a week – that taking 5 mg of prednisone relieved the pain which no muscle relaxers could touch. So I believe I am dealing with GCA. I have to get back to the doctors – why is it always Friday afternoon when these decisions are made?

When the neck pain began I did not think it was related to the PMR, just to some strain or damage. However the intensity of the pain and the way it travels evenly divided up both sides of my skull and behind my ears is unlike anything I have ever experienced. I am a little bit scared and yet hate to sound like an alarmist. Thanks for reading this.

12 Replies

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  • It may or may not be GCA - the timing of your nighttime pain could mean it might be a different form of inflammatory arthritis which can be confused with PMR in the early stages, ankylosing spondylitis. It also responds to pred. Does it improve once you get up and start moving?

  • Thanks. I have done a little reading about ankylosing spondylitis and at first glance it doesn't seem to key in with my other symptoms but I am going to look into it further. Thank you for your reply.

  • Hi Cookie .... one of the Forums wonderful experts will come along side you soon to help...I promise you that. I am still in the learning stage of PMR/GCA so can mostly offer you empathy and well wishes. I will be eager along with you to read the info from our very knowledgeable " ONES " that will be provided soon.

    Suzanne

  • I cannot tell you how much better I feel having connected with this group, and I hope to provide support and knowledge as I can learn and go through this process With all of you.

  • Cookie Kelly, is it possible to call your doctors office? If they can't help you, perhaps they can let you know where do go. Waiting the weekend would not be a comfortable choice for me especially if my vision could be at risk. I learned from my pre-diagnosis that I should have not minimize some of symptoms. Not to frighten you, yet as we know vision is priceless. Your not an alarmist, just advocating for your health! You also don't want to experience additional pain, and than of course panic, over the long weekend

    Keep us posted on how you are doing if you can and take care of yourself. Warm hugs.

    TJ

  • After writing my post I increased my prediction and also began to take it in increments of six hours, which has almost eradicated any pain. I am carefully watching for any visual disturbances and at the first sign will go to the ER. I will let you know and appreciate your advice. I am not very good at this and should probably not avoid the ER, yet feel sure they will tell me to take more and wait until my doctor returns from the weekend-a fatalist approach I know.

    Thank you for your kind and good help.

  • Take care of yourself and be sure to keep advocating for yourself as well. Glad to hear you are doing better.

    TJ

  • Oh Dear! Bank Holiday too. Let's hope everyone else is on holiday because if it was me I would be considering A and E to be checked out and advised on my Prednisalone dose. Better to be safe than sorry. Be ready to deliver a short seminar on PMR/ GCA the knowledge is scarily absent sometimes. Let us know what happens. Fingers crossed that whatever it is it is diagnosed and dealt with quickly. Best wishes!!!

  • Hi I was diagnosed with PMR in Jan 2015 and then diagnosed with GCA, I had a positive biopsy, I had sight loss but it returned, it was very frightening, but I feel so lucky, so I'm down from 80mg to 4.5 mg,

    And up to now my CRP and ESR always reflect on pain I'm having,

    But I started off with neck pain, flu like symptoms and pain in my thighs, I was on 20 mg pred, and it was when I was reducing, ( on rheumatologist advice) I was down to 12.5 mg, and all hell broke loose, I had jaw pain, neck was bad and headache, To cut a long story short, I was on 80 mg I was fine no pain, and reducing down was ok, to a point, but not sure when pain returned, and like it wasn't bad,

    But now my neck is really bad, and I'm going to go to doctor, I read somewhere neck pain could be a result of fracture, right now it feels as though it's broke, I didn't increase my dose yet, I'm obsessed with getting my bloods done, and 2 weeks ago they were fine, not sure if neck pain is something different from what I started off with, I'm probably not much help, take care

  • Good luck to you-I am such a newbie but gathering great respect for now different and difficult each person's can be, to hear your story is a GREAT help and I appreciate it.

  • My wife started with neck pain August 2016 and then in occipital area bilaterally and intense. GP diagnosed inflammation of a disk in neck but a MRI showed this not to be the case (diagnosis on Friday of bank holl weekend meant we ended up with private MRI on bank Holliday Monday!!!).

    Despite high esr and crp, rheumatologists (two of them) discounted GCA as they seem to think the temporal arteries have to be involved. GCA affects the carotid arteries and their branches and the occipital artery is a branch so it can be affected.

    25 mg prednisalone did help but in Jan the temporal arteries were becoming prominent, there was pain in eating muscles when chewing (claudication) and a tender area on the scalp. This time GCA was diagnosed and went to 60 mg and is slowly tapering (but feels awful most of the time).

    In theory ultrasound can be used on occipital arteries but there are few operators who are trained to do so.

    You need a diagnosis urgently and if you get any visual disturbances go to eye casualty immediately.

  • Thank you very much for your very informative post. I have increased my dosage and watching for any vision issues.

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