GP diagnosed pmr before bloodwork done

yes, my gp diagnosed me with pmr before any bloodwork done, and started me on 40 mg pred oct 12, because my level of pain had reached such an intolerable level( saw gp 2 weeks prior as pain was increasing, ),struggle to get in and out of bed, without terrible pain, shoulders, couldnt dress, brush teeth, brush hair etc, also, pain in buttocks hamstrings, at that time was still waiting for appt with rheumy, and said she was expert, she would diagnose, but as everyone, incl rhemy( whom i saw on oct 25 ) said, that dose was too high, it would take care of any pain from any condition, at any rate, she didn,t have enough information to make diagnosis, wanted reports from my dr re bone density, xray from physical, chest xray, etc, and wanted more bloodwork done, in meantime, reduced my dose down to 20 which i have been on since 7 days ago, at the higher dose,as i tapered every 3 days since oct 25. pain was not noticeable so much on awakening, but since on 20 mg , seems shoulder and buttocks pain returning, not to the same degree, but enough to be somewhat uncomfortable for 4-5 hrs each morning,plus of course, lack of sleep taking a toll on me, my question is, which i am seeing rheumy today and will ask her, is why am i getting symptons back on this 20 mg, if pmr is suppose to manage pain on a 15mg dose, ?is it side affects from reducing so quickly, and dropping from 40-35-30-25 every 3 days since oct 25th to now 20 mg,for last 7 days, or does it indicate some other condition ? wbc count was up after first dose of pred, also platelets, neutrophils, and some other counts up, but not sediment rate, very confusing, and i suppose for rheumy is as well, although she,s the expert, still think not having bloodwork before starting pred was a huge mistake, making it so hard for correct diagnosis, but as rheumy said, that,s in past cant do anything about it, long story, but am scared, with all ive read, i had the classic pmr symptons, when saw gp on oct 12th, just don,t know why he started me so high, no headaches or TA symptons at that time ?

20 Replies

  • Hi,

    I think your GP started you at 40mg because he was worried about your tender scalp and teeth problems - which actually are symptoms of GCA, so don't judge him too harshly. Yes maybe he should have carried out blood tests first, but he took a decision and obviously thought it the right way to go. We hear many different stories about GPS and it seems that they are damned if they do, and damned if they don't!

    As for what dose controls PMR - that's difficult, varies from person to person. Remember we had this discussion previously and someone commented that when vets prescribe steroids they weight the animal to see what the correct dose is? maybe doctors should do that!

    Your current pains could be withdrawal symptoms, but they could also be a flare, or even the 20mg not lasting a full 24 hr period.

    Hopefully you will get some answers from your Rheumy later today.

  • well i would agree with why he started me high, if i had any TA symptons, but know sore scalp, head problems or jaw problems at the time, ? think just because pain was intolerable i guess, still wished he would have done appropriate bloodtests, and have me wait out a day, bloodwork results usually back in 24 hrs, however, is what it is, see what rheumy has to say today now, thank you

  • I'm assuming that you mean you couldn't brush your teeth or hair not because of pain but because your arms didn't work well enough to do it? That was what happened to me - I had to prop my arm on a shelf to do either!

    Maybe you have been doing more now you can actually move a bit - pred only manages the symptoms and the real cause of the PMR, an autoimmune disorder, is still chugging away in the background, still making your immune system attack your body by mistake. That makes your muscles intolerant of acute exercise and they will hurt if you overdo things and take much longer to recover.

    Another possibility for the shoulder and buttock pain returning is that you have bursitis in the shoulders and piriformis syndrome in your lower back. Both can be found in PMR and respond to higher doses of oral pred but less so to lower doses, or at least, take longer to improve. They respond better to local treatments.

  • yes,, couldn,t raise ouarms to brush hair,as that would cause terrible pain, well yes, i have read about piriformis, and thought couple months ago about that possibility, is that condition initiated from lower back problem, and dr initially thought tendonitis in right shoulder, which is where this all started, but ultrasound and xray didn,t support that, only some calcium build up, not enough to account for degree of pain, so you say these conditions can be part of pmr ? and are you talking about steroid injections ?

  • also, curious, if in fact these symptons are from tendonitis in shoulder, or shoulders, and buttocks and hamstring pain caused from bursitis, would these conditions respond to pred, in other words, would they subside through the day, have to say, prior to pred treatment, that was not the case, i would have those symptons sometimes all day, sometimes on and off, right into evening hrs, since pred, seem to subside after i am up for 5-6 hrs, such a confusing situation

  • Sounds about right (in my experience anyway). The discomfort/pain is due to inflammation, often myofascial pain syndrome as well which is slightly different to piriformis, and after taking a new dose - or at higher doses - it fades so it is less painful. But, as with PMR,, if the dose isn't enough it will break through.

    Not necessarily steroid injections though I have had them and they do help me - you can have manual therapies for piriformis and myofascial pain syndrome if it isn't too bad. A good (sports) massage therapist can identify the MPS trigger points and mobilise them with thumbs/fingers (and even elbows, don't ask!). I found Bowen therapy very helpful if you want to try/can afford a complementary therapy, again it does depend a bit how bad it is. I have had a technique here in mainland Europe which is called needling - there are physiotherapy centres who do it in the UK I discovered this week , we have been discussing it over on the LupusUK forum. It is called intramuscular stimulation (google it). It says it is used for pain of neuropathic origin - but it also encourages spasmed muscles to relax. I had a session done by my GP using lignocaine, a local anaesthetic, about 10 days ago and the difference is noticeable. Think I MIGHT ask if she will do another but will wait a bit longer - she has referred me for physio, we'll see how many years that may take!

    I've had back pain for years - but PMR really made it far worse. Identifying it as myofascial pain syndrome and treating it has made life a lot less uncomfortable! I was sent to the local hospital pain clinic and I know that is where my friend on the LupusUK forum was sent for IMS from.

  • PMRpro, can you tell us more about how to find the Physio centres in the UK that do needling- I have been looking for these myself and have drawn a blank. I think my awful pain in my right thigh might benefit from that as I can feel lots of little lumps and also hard muscles which seem to be in spasm, but I have already tried so many things including physio,ultrasound,Bowen,massage etc. that have mostly made it worse!

  • Search for intramuscular stimulation uk.

    I know there is a good one in Newmarket as a friend goes there, sent by her consultant, though whether the NHS pays I have no idea. I think Chelmsford came up, Staffordshire, Leicester and places south, London of course. There are said to be only about 15 places in the UK - unless there are doctors who also do it. Judging by the ones I looked at - it tends to be sport physiotherapists who do it and that really doesn't surprise me.

  • i a m in Canada, but thank you

  • My reply there was to Suzy - who is in the UK (unless she's moved ;-) ).

    In your case - search intramuscular stimulation canada. Amongst the links you will get should be this:

    and it has a practitioner directory for their listed practitioners. There will be others I imagine.

  • People are different. Also you may have more than one issue affecting you. Prednisone made me feel like my old self in no time. However the expert said I can't have pmr. You're too young. It never happens. Really??

  • How old are you? -ish will do ;-)

  • i am 68

  • Then your "expert" is no expert. The international guidelines say "over 50". I, and a lot of others, were in our early 50s. The "average age" they insist is 72 - but to have an average means that since many are OVER 72, there must be a lot who are UNDER 72.

    I'd have looked for a real expert - I know one who will willingly diagnose someone in their 40s if the picture fits.

    Oops - Heron has just pointed out this wasn't Crazy Trucker who replied!

    I swear - this forum will drive me crazy so I'll just join CT!!!!!

  • How old is Crazy Trucker?

  • I googled the intramuscular stimulation out of curiosity because a friend swears by "needling" that her acupuncturist does. One article says that it's a difference in the placement but uses the same type of needle. I wonder if you might find an acupuncturist who know how to do it since it seems that the training might be similar enough to have learned both. Just a thought if you are having difficulty finding someone knowledgable enough to do it.

  • The wet needling I have is simply using a hypodermic syringe with steroid, local anaesthetic or even just sterile saline in it. Not sure about the dry version, not had that.

  • It uses a similar needle, but my understanding is (and I stand to be corrected) acupuncture balances energy flow in the body, whereas needling, at least dry needling, resets the electrical signals in specific muscles. I've had successful treatment, for different things, of both. Physiotherapists have been the people who have helped me out with these treatments.

  • I accept that is how the Chinese explained it - but it doesn't alter the fact it could equally be a triggering of the electrical signals in our modern understanding and parlance. In that sense, how it does it is less important than the fact it does it!

  • The sensation for me is completely different. Acupuncture was simply slight pinpricks. Dry needling really does trigger some sort of reaction - sometimes it feels just like someone pressing a finger right into my flesh. It's not painful, but it's very strange.

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