I'm new and would love to hear your thoughts

I am a 51 yr old female. I have been experiencing PMR symptoms and working with my doctor for the past 6 months. My doctor sent me to a rheumatologist (2 hours away). It took 5 weeks to get an appointment. At the appointment the rheumy was more concerned with who in her office had scheduled the appointment because they only gave her 15 minutes instead of an hour. She didn't do any exam and just ordered repeat blood tests and x-rays. I had to wait another 5 weeks to get back in. All tests normal except CRP - 2.8 with first test, 5.6 when rheumy did it.

The second appointment with rheumy - she walked in and looked at my hands. I had a few spots that had gotten itchy a few days before and I had scratched the skin off. She immediately sat down and said, "I believe you have psoriatic arthritis. Do you want to start treatment?" I was stunned. I just went along with it for the few minutes the appointment lasted as I had already decided I wouldn't be coming back to her.

When I got home I immediately called my family doctor and got an appointment the next day. She agreed that I do not have psoriatic arthritis. This is she when she told me that she thinks I have PMR, which I had never heard of. We agreed she would find me another rheumy. I started researching PMR and am completely convinced this is what I have. I contacted my doc and said I want to start the treatment. She said no because my ESR was normal!

It has been almost 2 weeks and still no appointment with another rheumy. I am taking 800 mg ibuprofen and a tylenol 3 every 8 hours. This barely touches my pain and every day it gets harder to function.

Any thoughts would be so appreciated.

16 Replies

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  • Hi,

    Some people never have raised blood readings, which is what throws the doctors off the diagnosis. The symptoms are the key, and the fact that painkillers are not helping just makes the case for PMR stronger. Your doctor has said your ESR is "normal" but what was her reaction to the rise in CRP? Many consider that is a more reliable indicator than ESR.

    If you have the strength (!!) go back to doctor and ask again if you can try steroids for just a week to see if they make any difference. If they don't - you can easily stop them after that short time.

    Where do you live? I would guess not in the UK, but wherever someone may be able to recommend a Rheumy.

  • Thank you for your response. I will take your advice and try again to get the steroid. I will stress - just me a week! Thanks again!

  • I am in the U.S. - Michigan.

  • I guessed US, but one can never be sure! From other posts think some of your doctors and rheumies are even more useless than ours in the UK! Wherever they all seem to have an aversion to the steroids.

    Heaven help us all. Keep smiling !

  • groups.yahoo.com/neo/groups...

    USA Group, but still come here...........

    It was set-up to help those on other side of pond to link up.

    However, the little island on this side of the pond - just knows a bit more................

    Mayo site has loads of info and is engaged in current research.

  • Hello hapi - welcome to the forum. If the painkillers are hardly touching your pain, and your symptoms of stiffness/pain are evenly distributed (usually in shoulders/upper arms, sometimes in hips/thighs, plus other places) it does sound like pmr. My blood markers have been very little raised, diagnosis by my gp was based on my symptoms - after she'd asked me to raise my arms and saw the pain on my face, she knew!

    As DL suggests, it would be well worth trying some prednisolone, as the effect can be very quick indeed (mine worked within an hours, some people react more slowly), as it can be stopped quickly providing you've not been on it for too long a period (about 1-2 weeks, I think).

    As for rheumies - yours sounds a disgrace! I've not been referred as there isn't anything a rheumy could do that isn't within my gp's capabilities.

    I was lucky enough to find this forum very quickly after I learned my diagnosis, and I've found it so helpful in educating myself about what I can do to help myself, as well as identifying the questions I should be asking (about treatment, dosage etc). It's also extremely supportive for those times when we just need to sound off or get a bit of encouragement - and the pmr path is certainly an up and down one!

    Best wishes to you in getting your treatment programme sorted out.

  • Thank you. I am so glad that I have found this community!

  • I think you're okay up to 3 weeks - that's when the old adrenals go to sleep!

  • Yes indeed this forum is a godsend. So much advice and support "You are not alone"

  • When I first saw a rheumy for ?PMR he wanted to make what I had psoriatric arthritis - and you CAN have it without any history of psoriasis. It isn't uncommon for rheumies to want a patient to have ANYTHING rather than PMR - it is almost as if they think PMR is beneath them.

    Point out to your GP that the CRP is raised - and that it can be raised on its own in PMR in some patients.

    uptodate.com/contents/clini...

    says

    "Some evidence suggests that an elevated serum C-reactive protein (CRP) level is more common than a high ESR. In two reports from the same group, an elevated ESR (greater than 30 mm/hour) was noted in 92 to 94 percent of patients at the time of diagnosis of PMR, while 99 percent of such patients had an increased serum CRP level (greater than 5 mg/L) [31,35]. In one of these studies, 9 of the 10 patients with a normal ESR at time of diagnosis had an elevated CRP (median 14 mg/L, range 7 to 47 mg/L), although mean values tended to be lower in these patients than in the PMR group as a whole (19 versus 68 mg/L). In another study, only 1.5 percent of patients had an ESR and CRP within normal limits (defined as less than 20 mm/hour and 10 mg/L, respectively) at the time of diagnosis "

  • Thank you. I will take that information with me when I see my doc.

  • Go to this link, read and download if you want to:

    pmr-gca-northeast.org.uk/as...

  • That is great information! Thank you!

  • No problem that is what we are here to do.............provide as accurate as possible information.

    There is a whole load more on the website............

  • Hi, I am 51 as well and presented with normal labs but classic symptoms of prm. I am sorry to hear it is taking so long for a diagnosis and plan of care as we all know what a struggle everyday can be like. I was started on 20 mg of Prednisone in Feb...it took exactly 10 days before I knew the Prednisone was the answer because 1 day I got out of bed and when I got into the btrm I thought to myself how did I get here...no wincing, hobbling holding my hips or neck to stretch...the pain was gone! If you trial the Prednisone and the pain does not go away it is not pmr. Positive thoughts your way.

  • Hi,

    I have a biopsy positive Temporal Arteritis. My ESR and CRP were nevered raised. I also have psoriatic arthritis and have had for about 25 years and once again no raised ESR or CRP. So blood tests can be totally normal. Good luck I hope this is resolved for you soon. :)

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