Very confused with it all

I have been on 15 to 20mg of ped for nearly three years. I have had y ESR ? checked twice which I asked for. waiting for result now don't think my doctor is interestedhe said with all my illness I am lucky I am here. I am 82. If course we both laughed but I thought that's not helpful. Then he said the bad news is you got tes. Asked what to eat he said no bananas and not much bread. He did try to send me on a course but I got Lymphoedema whchbis difficult and osteoarthritis. I wonder what imflamation markers do I need to reduce the preds? It's so confusing . Would be grateful for help. Thankyou

10 Replies

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  • I'm sure that lots of folk will come along and offer advice and I'm not surprised that you are confused! You don't seem to have much support,advice and care from your GP. Just out of interest what were you diagnosed with in the first instance? PMR? Was that why you were put on steroids? Do you mean that in nearly three years your GP has checked your ESR blood figures twice? Do you also mean that your GP has kept you on a dose of 15/20 mg of Pred because of your ESR figure? What have your symptoms been like during this time? Don't want to confuse you anymore and I know I'm just asking more questions than answering them but felt perhaps it was helpful just to clarify a few things. Jackie

  • Jackoh thanks for replying. I have steroids for PMR because I was in agony in shoulders and had to roll out of bed. I think I had blood test in beginning. A month ago I asked if I could have check up. I don't have symptoms with 20 mg . I am fed up with the other illnesses since like Diabetes.

  • Hi Georgemichael. Didn't comment anymore on your post , although following it as many more had given good advice. I know it's sometimes hard but maybe from your last post you should consider changing your GP or seeing another GP in the practice who would take you seriously. Also to take someone with you sometimes helps. I know many years ago when my dad was quite ill I went with him and it shouldn't have done, but it did, make a difference, which resulted in him having the hospital appointments he needed rather than being fobbed off.

    Jackie

  • In my case blood markers (ESR and CRP) have been normal for a long time but I've had symptoms, so I have tended to go on these. What symptoms do you have?

  • They have had to give me another blood test next week ro have correct results for some reason. I will letyou know the results. Thanks

  • georgemichael, if you have been left on high doses of 15-20mg Prednisolone without being able to reduce down to much lower doses for as long as three years, then you really should have been referred to a rheumatologist by now. I would not take very kindly to being told by my GP that I "was lucky to be here"! If you haven't already been referred to a rheumatologist then do ask for that referral, or at least try to see a different doctor in your practice who may be more PMR savvy or at least more "interested".

    Apart from having your ESR tested just twice in 3 years, have you ever had a CRP blood test? This also checks for inflammation and is considered by some doctors to be the more reliable marker of inflammation. However, having said all that, although I had very high markers of inflammation at the outset which were a useful guide as I reduced, some people with PMR never have raised markers in their blood, and the only thing they have to go by is their symptoms. Also, the ESR in particular can rise due to many illnesses, flu for example.

    You need a second opinion and you need it soon - you should not be left on 15-20mg with no further advice or help for such a long period.

  • Celtic thank you. I feel more confident to askmy doctor for referral. I will let you know. Love the Celtic name.

  • georgemichael, yes do please come back after your appointment - hopefully, it will be a more professional and helpful appointment than that of your previous experience.

    Glad you like my username - chosen as I was born in Wales! How about "georgemichael"?

  • It is symptoms that are more important than the blood markers. If you can reduce a small amount and the symptoms don't come back, you can try another small amount.

    If "tes" is diabetes I think perhaps you need a bit more help than "no bananas and not much bread". He could offer you a dietician appointment at the practice - unless the practice is too mean to provide it. In that case he could send you to one at the hospital.

    Like the others - I think you need a doctor who doesn't dismiss his patients on grounds of age and illnesses.

  • PMRpro thank you. My doctor just lays back in his chair and gives minimum advie. I I have Lympnodema and I never knew. Just got treated as swollen feet. Itold then I got cellulitis and it was a nurse that told me to go on two weeks antibiotics instead of of one and I rang and told my doctor. I have had more help on these groups rhan doctor. Feel more positive to try and reduce . Thanks it

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