Joining the club that nobody wants to join

Recently diagnosed with PMR after lots of visits to doctors. Had X rays, blood tests, sent to A+E, more blood tests and diagnosed with costicondritis. Drugs for that did nothing so back again for more blood tests a month later. Now on Pred and first visit back to doc he wanted to increase dosage to 20g. Had barely been on 15g a week so decided to stick with 15. Back tomorrow for more blood tests so will have to wait and see results of them.

Glad to have found this forum, everyone seems so knowledgeable and helpful.

8 Replies

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  • Hello and welcome Hollyseden. Glad you've finally got your diagnosis. Your doctor must still be concerned about your inflammation levels if she he wants you to go to 20 mgs. There is no virtue in continuing to suffer pain and stiffness on a lower dose than you need. It's a bit like having all the disadvantages and none of the advantages. Inflammation is harmful and shouldn't go unchecked. As soon as your condition stabilises you will be reducing anyway. Did you experience the Prednisalone miracle? I went from hobbling about, unable to get out of chairs, bed, bath unaided to almost normal in 48 hours. 14 months on I have reduced to 6 mgs from 20 mgs with a few blips, my mobility is still good. Let us know how you get on, there is a wealth of helpful information on here.

  • Hi No I can't say I experienced the Pred miracle I'd hoped for. The doctor asked me on my first visit back after starting Pred what % of improvement I felt? Then asked if I felt 50% better. Don't think so said I, that's when he upped the dose. I collected the prescription then went home and properly thought about how different I felt and decided I was 50% so didn't want to up the die if not necessary. Blood tests will tell. Sleeping is a problem already without more preferably haha so we'll see how I get on this week.

  • Hi Hollyseden and welcome to our club! The more posts I see which tell of a long, drawn-out lead-up to a diagnosis of PMR, the luckier I count myself to have been persuaded to shell out the necessary money to get a private consultation and come home with a 90sec diagnosis and clutching a fistful of Prednisalone....! (OK, I slightly crunched the car on the way home, as I couldn't turn my head enough to see at a roundabout but hey-ho - at least I knew what was wrong with me and that was a weight lifted, even if I'd never heard of PMR !)

    However, I certainly didn't experience the Pred miracle and had to increase to 20mg after 2 weeks. After another couple of weeks I did 'get my life back' and have been able to work. This was in March/April 2016 and am now down to 5mg (using 'dead slow, nearly stop' reduction plan). So - still a way to go but, in between times, have had a fairly arduous trip to the USA and haven't been put off having a holiday.

    Good luck with your PMR 'trip' and I'm sure you'll get a wealth of good advice from the experts on this forum!

  • Hello - and you've definitely in the right place for support and information. I'm certainly not an expert but there are others here who will be able to help. I just wanted to say that I've found the most important thing is to listen to your body, regardless of doctor's instructions. My own GP had to look up the guide lines for PMR and GCA, which definitely didn't inspire confidence!

    Jan

  • My doctor did the same! Found it slightly unnerving to see doc actually 'googling' guidelines. It's quite a big practice too, so difficult to see same doctor twice, which is also a hassle because each visit seems like first time and have to explain all from the beginning 😫

  • Yes I recognise the same issues. I dropped the guideline for treatment into surgery after that. Looking back I reckon first main symptom was a "torn rotator cuff" in left shoulder after a flight from Portugal in 2011.

    I tapered too quickly on drs orders and was back up at 15mg after 7months. still on 13mg and doing dsns to get to 12mg at moment. Ignoring hair cheeks weight. pain concerns me more. But I admire anyone who works during this process. 👏👏

  • Be grateful - most doctors simply ignore them (which may or may not be a bad thing). It seems to escape them that when they use Dr Google he also hands out links to their own specialist colleges Guidelines and Recommendations!

  • "blood tests will tell"

    Just a word of caution that they don't always tell. 20% of folk( myself included) do not have a dramatic increase in CRP or ESR figures. In fact my ESR has never been higher than 16 with PMR/GCA and my CRP is usually in the range of -1 to 1. Also to be aware that your blood readings often lag behind symptoms so symptoms are really king here.

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