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Does anyone doubt they have the right diagnosis of PMR

Posted , 16 users are following.

k8211
k8211

So I started taking 20mg of prednisone 6 days ago.  After 36 hours, my stiffness was completely GONE.  I even had some improvmement 4 hours after taking my first dose.  The difference is remarkable.  No problems getting in and our of bathtub, getting in or out of car, walking, dressing, etc., etc.  However in my case some things were not typical, such as my age (50 years old), my stiffness was not worse in the morning, and my ESR and CRP were elevated but not really high. Even though I have dramatic results with the prednisone, I worry that it may be something other than PMR in which prednisone is not totally necessary. I am just not 100% confident in the diagnosis and do not want to take steroids long term if this is the case.  Anyone else feel the same?????

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  • FlipDover_Aust
    FlipDover_Aust k8211

    Posted

    Oh, forgot to mention, I had just turned 51 when I got sick, so your age is 'typical' to me!

    There's a lot of us here in our early 50s.

  • jo42444
    jo42444 k8211

    Posted

    Unlike some of the previous comments I have never been completely pain free since I started on 2g Dec 2014 but was forced to drop to 2.5mg by june 2015 then went back to 5mg for 3 months and was doing well but told to continue dropping im down to 3.5 and in more pain. The RX thinks I should bee pain free with no no hand or feet involvement or its not PMR or is also something else. He suggested methotrexate and when I wouldnt take it advised me to seek another dr she gave me shots in the hip which so far are not working and wants me to take naproxen until the parmacy called and advised it interacts with blood pressure medication. I think its better if you have a much better reduction plan and show the really noticible improvement with the use of prednisone
    • Anhaga
      Anhaga jo42444

      Posted

      You've probably posted more about your PMR journey somewhere, but a couple of your remarks here made me curious.  You say your doctor thinks you should be pain free with no hand or foot involvement or it's not PMR.  I know a lot of people are in fact diagnosed with another ailment subsequent to the PMR diagnosis, often late onset rheumatoid arthritis (LORA).  Is that what your doctor thinks you may have?  Do you have any swelling with your pain?  On the other hand I also know a lot of people lately have been posting about pain in hands and feet and it seems often to be related to effects occurring as pred dose is reduced.  I wonder if you are feeling more pain because your pred dose has never been allowed to stay long enough at a high enough level to get the inflammation under control to begin with?  (I assume you meant you started at 20 mg?)  To drop from 20 mg to 2.5 in six months is nearly unheard of in PMR.

    • jo42444
      jo42444 Anhaga

      Posted

      Anhaga, Yes I dont feel i was ever left on a high enough dose of prednisone for a long enough time but when I hear others say the change was drastic in pain when on 20 mg Im not able to say that and when I got the two shots in the hips this week I would have thought there would be a drastic difference but there was not. LORA is my fear and has been for months now. When I was at new RX this week she ultrasound my hands and could see tendon problems but didnt elaborate. My joints at my hand are often red and are slightly swollen and very stiff in the morning. My toe joints are very stiff and sore and the bottoms of my feet. Thank goodness for sandles. My legs have had increased pain inthe thigh area. I will see the RX on Sept 1 and until then she wants me to reduce to 2.5mg and would not give me any more refills. Said she didnt prescribe the prenisone. So on top of everthing the whole medical feild is making me crazy. It would have been much better to get a more straight forward diagnosis but its not going to go that way. Im very happy for members on the site that have more straight forward diagnosis. Although its very stessfull in the beginning once its under control with prednisone one can move on. Thank you so much for asking im having a really rough week and so appreciate the support. Joanne
    • Anhaga
      Anhaga jo42444

      Posted

      I really hope you can get some answers soon so that a proper recovery plan can be put in place.  Eat healthy and get lots of rest while the doctors make up their minds, and hopefully things will soon improve.  💕
  • kate85294
    kate85294 k8211

    Posted

    Hi dear

    I kind of have your question. I truly don't know if I have GCA, PMR, Vasculitis or MS.

    By the way, I am 37 years old and my doctors keep telling me that I am to young to be for any of those conditions. ??

    Even though, all the inflammatory blood works test results came back normal but I still have pain in my left side. The whole side is on pain from the scalp to the toe. It is very sensitive to touching. The left upper side of my scalp gets hot, itchy and sensitive to touch. It makes me to grab and pull the hair in that area hoping to release the pain. The pain goes to my inner left ear, then to my left eye, left chick and left upper side of my teeth. Then it goes to my troth and back of my neck the left shoulder left under arm left Brest lest hand then left hip left leg and left foot. Sometimes It gets so painful that I have to message the area forever. I should add that it's been two days that I am pain free but I know it will come back anytime soon.

    This pain get worse when I am in stressful situations. The pain gets better on its own but never leaves. I can feel it most of the tine. Specially my scalp and my eye. It's like there is something in my eye that I want to pull it out. When I touch the my left side of my throat it hurts then I trace the line it goes to my left shoulder and back of my neck specially on the left side. I keep messaging my left shoulder. If I touch the back of neck even its skin is sensitive to touch I feel radiation burning and itching over there. It's been years now that I am dealing with this problem. I went to many dentists to check on my teeth they took many x-rays but nothing showed up. Then I went to the optometrist to check on my eyes nothing showed as well. Well i wear glasses and my eye number changed for little bit. Then I keep complaining from my left side to my dr and he keep blaming the anxiety. Beacuse I am 37 years old he his not taking the situation seriously. And he does not think that I might be suffering from GCA due to my age and normal blood tests results.

    The only abnormal result that I've got was my brain MRI which showed flare hyperintensities in both of my frontal lobs. The radiologist suggested many conditions and one of the was Vasculitis and inflammation of the veins but my dr dismiss it just beacuse of my age.

    He referred me to the neurologist which I went to and I explained everything to him as well he was confused about it as well. Beacuse he checked on my neurological signs and it just they were normal he dismissed further evaluations.

    Here I am with many what ifs questions. What if I am suffering from GCA and doctors can not diagnose it?

    What if I get blind in my left eye just beacuse of doctors neglects to identified the problem?

    What if I'll have a stroke beacuse of it?

    I am terrified. I keep asking them calling them but I get no help.

    Honestly, I am not a dr but if the MRI shows something it means there must be something why they don't send me for more tests and images I don't understand. They keep telling me that its expensive.

    I reaserched on google about the signs and symptoms of the GCA and I've saw that some symptoms but not all are matching mine.

    Like sensitive scalp. But I don't know when it says sensitive scalp does it mean the whole scalp or just one side of the scalp.

    Beacuse as I said mine is only on the left side on the top part of my scalp it's like a size of a quarter. Only that part gets warm, itchy, painful that I can not touch it. But I grab the hair over there and pull it to relieve the pain. Sometimes I feel electricity bring released from that part that goes to my face and neck and the rest of my left side.

    Then I read about eye pain which matches mine as well. But I don't get double vision or blurred. I just get eye pain, pressure, itching, and burning.

    It's been years now that I have this problem.

    Then all the scalp around it gets in pain even my left chick. Then I have to put pressure on my left upper side of my teeth and chick.

    In the google it talks about

    jaw claudication which is one of the systematic signs of the GCA.

    Again as I've said I have that pain but not in the whole jaw only on the left upper side. I even pulled out my left upper side wisdom tooth hopping to relieve the pain. But nothing changed.

    So here I am lost and confused.

    One side I have abnormal MRI result, the other side normal ESR and C- receptive. But some overall body symptoms that no one takes it seriously.

    Will you guys please tell me know about the pain, signs and symptoms that you've had. I mean be specifics with details like I was that I could see if mine matches as well.

    Did anyone of you do MRI scanning that showed some abnormalities on your frontal lobs like mine did?

    Did you all have the abnormal blood works results or there were some exceptions?

    Did you do biopsy or head head ultrasound to confirm the GCA?

    Did you all go to neurologist or your primary care dr could diagnose you.

    Does GCA pain only occurs on on side of the body or on both side?

    Did you have the pain for a short time or for years to be diagnosed?

    Will you please help me to understand this problem better.

    I'll truly appreciates you all for putting time and reading my long list of concerns. Thank you

    ??

    • Anhaga
      Anhaga kate85294

      Posted

      Because one of the symptoms of PMR/GCA seems to be its bilateral nature it does make it less likely that you have this particular illness.  I hope one of the experts will be online soon to give you some ideas.  However I did think of something.  I had an odd event occur when I was pregnant with my first child.  I don't remember all the details but it did involve tingling and numbness down one side.  Of course I was afraid I was having a stroke.  I phoned the doctor and he said it sounded like I was having a "vascular attack" which I later learned was fancy talk for a migraine.  Migraines do not always cause headache, although I have suffered from migraine since I was about 11.  My brother-in-law had an episode where he couldn't talk.  Again, thought he was having a stroke.  And in the end he was diagnosed with a "silent migraine".  Apparently migraine sufferers may indeed have brain abnormalities.  Given that you have been experiencing these symptoms for some time, your medics really should be trying harder to get to the root of it.  I hope you get some answers soon.

    • kate85294
      kate85294 Anhaga

      Posted

      Awww thank you for your respond

      If you bring the specialist please bring up all of my questions. It will be nice if he or she can give us more detail information about the pain that GCA can cause. Beacuse just saying sencetive or tender scalp is to general and it's not specific. Beacuse I have this problem but as I said it's in the smal location on top and left side of my scalp and it's not involving the whole scalp.

      Thank you again

    • Anhaga
      Anhaga kate85294

      Posted

      Kate, I'm sorry, these diagnoses were many years ago - my daughter is now 38, and it was just my GP telling me what I had - he didn't even look at me.  Come to think of it, it wasn't even my doctor, just the duty doctor that day.  And I do not know what tests my brother-in-law had to take to determine he hadn't had a stroke.  I think it's like PMR - they eliminated everything (more serious) else, and were left with the silent migraine.  He's been fine now, probably for 15 years or so.  Maybe longer.  I'll see if I can find out anything else about these kinds of migraine and will send you private message if I do.  Probably not till tomorrow, though. Then you can ask your doctor if that might be the problem.  

    • lodgerUK_NE
      lodgerUK_NE kate85294

      Posted

      You could be describing my symptoms when I was first diagnosed.

      The test is simple if they have done every investigation and you still have the medical symptoms -  they give you are dose of pred  (40mg in your case) and if the symptoms go away  - that is it.

      Have you read the British Society of Rheumatologists on the Diagnosis of Treatment of both GCA and PMR, they are on this

      website and also on the PMR & GCA North East website and you can download them as well

      It is rare, but not unusual for people your age and below to have GCA and/or PMR.

      Statistics are taken on a Bell Curve and the mean average is the one at the top of the curve, people fall down both sides of that curve which means that someone younger than 50 can fall down one side and older on t'other.

      You are going to have to fight your corner and get someone to give you a course of pred and see what happens.

      I would also ask to see a Vasculitis Consultant -

    • Anhaga
      Anhaga lodgerUK_NE

      Posted

      Did you also have the symptoms only on one side of your body?
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