Rummy first visit yesterday confused & frustrated

I went to burton hospital yesterday my doctor put me on steroids in June as blood showed sed rate 44 was on 30mg then struggled with side attests mood and sweats so he reduced to 20mg then in October down to 15mg but send rate went up on 30 mg it went down to 14 it's now at 33 on 20mg, I'm 45 in Feb the rummy said it could not be pmr as I wasn't 50 and over, I have had pain in my joints for 31/2 years since I suffered a ruptured bowel and got septs and put on a ventilator and enduced coma for six weeks I was in hospital for 11 weeks, at first my doctor said he thought it was fibromyalgia until the the bloods showed information, the rummy has but me on a eight week reduction of steroids to be off them so he can start doing test to find out what it is, he did do a full examination checking my movements to, he was adement that pmr was not the diagnoses as I was too young, I just feel so confused very low living on pain killers, carnt do much at all, so tired all the time, just not getting anywhere and have to wait for 10 weeks before I go back to the hospital, does anyone have any advice to help.

10 Replies

  • Derug, firstly, the rheumy needs to be made aware that although many people are over 50 when diagnosed with PMR, there are more and more people being diagnosed in their 40's, so you are definitely not "too young".

    However, if you are in so much pain and, in spite of being on 20mg of steroids, also need to take pain killing medication, then your rheumy is right to look for an answer elsewhere. Unfortunately, if it is PMR then simple pain killing medication rarely helps.

    Just a thought - has anyone carried out tests to see whether your pain could be due to a hormone imbalance? You are at a similar age to others I have come across whose pain has eventually resolved following hormone treatment.

    As bad as it can sometimes seem on steroids, I think the very worst time is when we are in no-man's land whilst searching for a diagnosis. If it was me, I think I would go to the GP and ask for referral for a second opinion - 10 weeks is certainly a long time to be left in pain without an answer.

  • Thank for reply, rumy said he needed me to free from the steroids before he do any test that's why ten week appointment, I told him that I no there are plenty of people in there 40s that have been diagnosed with pmr but he wouldn't except it, the pain killers just take the edge off the pain but it never goes away it did when I was on 30mg but the sideafects I seemed to suffer where extreme so had to reduce the dose, I will have to go back if the pain get anyworse than it is. Just sick of being pushed from pillow to post and not getting anywhere, sometimes I feel like I came up with the diagnoses of pmr on my own, I just think all the medical doctors should get together and sort out how to help people with sucpected pmr, instead of one doctor saying and believing the other is incorrect and we are in the middle, there has to be a better way. Sorry just needed a rant!

  • Hi Derug, I am so sorry you are in so much pain. Why do you think you have PMR? Is your pain bilateral? Is it in the hips and or shoulders? Has your doctor checked your CRP blood reading also vit D. He may be right that it is not PMR, but if it is, PMR does not wait until our fiftieth birthday before we can get it!

  • I have pain in shoulders neck arms hips knees weakness fatigue and if I do anything physical it wipes me out for a couple of days to recover, my GP thinks it's pmr as my inflamation levels where 44 and I had increased pain, I don't no what it is I just want the pain to go away, he put me on steroids and after two weeks I was down to 14, but as I reduced steroids to 20 then 15 it has crept back up to 33, I'm just really fed up with it all at the moment not coping well with it,

  • Those are pretty high doses for PMR and while the rheumy is wrong about age (as I think I've already said to you) it is fair to want to look for other things since it is a bit atypical. High doses of pred do mask other things, had a starting dose of 15mg been used and achieved a result I might feel otherwise.

    Where are you? Maybe we could suggest a more broadminded rheumy who does realise that PMR doesn't actually wait for your 50th birthday to strike...

  • Did the steroids work a miracle when you started taking them and the pain come back when you reduced? Did you have a blood test for CRP, it seems to be more reliable than ESR I have found? Most people start at 15mg dose of steroids and some at 20mg, PMR seems to react well to a low steroid dose, while other things may react to a higher dose.

  • Derug, in that first two weeks on steroids when your repeat blood tests clearly showed your inflammatory markers had reduced, did your pain resolve as well - at least by about 70%? If so, many doctors would take that as confirmation of PMR diagnosis.

    Far more emphasis needs to be put on how you feel rather than just relying on the blood results. However, at 30mgs, he did start you off on an unusually high dose for 'just' PMR - a more usual starting dose is 15-20mg. The higher doses are usually reserved for patients with GCA. It is the view of one of the leading experts on PMR/GCA in this country that there is absolutely no use in prescribing 30mgs for PMR. However, having started you at this high dose, he then reduced you in fairly large chunks whereas you might have been more successful reducing in smaller stages - less of a shock to the body. Certainly going from 20mg to 17.5 may have proved more successful than going straight down to 15mg. Do discuss your rheumy visit with your GP and see if he can arrange for you to have a second opinion.

  • My pain improved by about 70 percent in that first two weeks and then it slowly seemed to increase and now I am really struggling to do anything physical even cooking tea hurts, ironing, carnt hover at all even after I brought a really light hover to help, I hate when the house needs a vac and I carnt do it, crp was 39.1 before I started on steroids, last bloods 47.8 and sed rate 33, when I was on 30 mg of steroids my seed rate was 14 and my cpr was16.6. I think I will go and see my GP and talk to him, I just want to find out what it is,I have swollen glands to there tender to touch in my neck armpits, pain in fingersand knees, there swollen too. I live in Staffordshire, any help and advice would be greatfully received thanks everyone.

  • It really sounds like you have some sort of infection. The would account for swollen glands and also your raised inflammation markers. Not to discount that you may also have pmr.

  • Derug, as Heron has said, swollen glands along with your other symptoms can point to an infection of some sort but can also occur in many auto-immune, inflammatory conditions, including Rheumatoid Arthritis, Lupus and Sjogren's Syndrome, although with the latter one of the main symptoms can be dryness of the mouth and eyes, although not always.

    Your description of around a 70% improvement in your symptoms within the first couple of weeks of starting steroids does still point to the possibility of PMR but, as we have mentioned previously, many other conditions would also respond to a starting dose as high as 30mgs.

    Do go and have that chat with your GP and, if possible, get him to refer you for a second opinion. If you click on the link I gave you in my reply to your question about a local support group, the organiser of that group may be able to recommend another rheumatologist.

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