PMRGCAuk
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Have I done right?

Quick background, I’ve had PMR/ GCA exactly five years now and I’ve had ups and downs, in January while on 3 mg Pred I had trochanteric bursitis diagnosed following a Highlandfling incident at my sons wedding and had an injection of Depomedrone into the bursa, it worked after a few days and as I felt so good after a week or so I dropped my Pred to 2 mg. well about three or four weeks ago my hip started to hurt like hell and I had terrific stiffness and pain in my legs, I went to my GP who took bloods But said not to increase the Pred yet. The results for plasma viscosity had not come back, lost! So she did more bloods but agreed that day to reinject but not to increase the Pred until she had seen the results. By then I was so sore and stiff it was dreadful. There has been no noticeable improvement in the hip this time after two weeks. Yesterday while at the hospital seeing a cardiologist I asked if they had my new bloods on my case notes and they did, PV was within normal range. But as I was hobbling and my upper arms were now also so sore and heavy I thought that’s it, I took an extra 3 mgs and today have taken 5. Today I feel great again in comparison, so not sure if it’s the injection or the upped dose. I see my Rheumatologist the end of the month, should I continue on the 5 until then and then own up, I’ve not really got enough tablets to last me till then or should I go back to the GP now and show her the new me. Should I have given the injection longer to work. I was in such pain, felt awful, I looked worse / drained and I go grey when in pain. I just hate this bloody ailment so much, I’ve had enough.

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Me, I would stick with 5mg and have a row with the GP and get some more pred.

In the meantime put Tom Bowen in your search engine and read up on it. Bowen Therapy might just be for you and the best of it is, if the three one hour session for three consecutive weeks don't work, then they tell you...........honesty and I loved that.

PS It got me out of a wheelchair, dumped zimmer frame and only use a folding walking stick when ground is uneven. Mind that did not happen in three weeks.

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I tried Bowen a few years ago with little effect I’m afraid, expecting a physio appointment soon so might see how that goes. Thanks for your reply.

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I think you did absolutely right and yes I would confess all to the GP and get her on side. I would be inclined to stick with the helpful dose until I saw my Rheumatologist. I think the injection would be getting less, not more potent.

The mind boggles at your version of the Highland Fling. You will never live it down. I hope however, that a wonderful time was had by all and your recovery is swift and complete.

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Thanks Jane, I feel so much better today, I might just wait till I see the Rheumy though rather than the GP. I checked and I’ve got loads of 5 mg tabs.

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I'd stick with the 5mg too!

I develop trochanteric bursitis related to my PMR (it has always been a part of it) and although an injection does help loads when they get it right, if it isn't quite right it isn't enough. From your description I'd say the PMR is flaring and poking the trochanteric bursitis into life and you need not just the injection but also more oral pred. If it hasn't worked after 2 weeks it isn't going to. And you shouldn't have too many injections so don't let it get out of control.

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I’ve just counted up all the 5 mgs I have and it’s 28! Plenty to get me to the Rheumy appointment. It’s just so lovely being out of real pain after weeks.

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Hi,

Like you I had TB last year. Nothing so exciting as Highland Flinging though!

It took 2 injections and visits to sports physio/masseur inc acupuncture to sort it out. Not pleasant.

Mind you I’m not on Pred anymore, but I think if I had been I may have increased dose like you, at least for a few days, and then come back down to dose I was on.

Mind, I can understand why the GP didn’t want you to increase - Pred is not a painkiller for other illnesses - and it can muddy the waters!

See if you can get back down to 3mg, and try physio or Bowen for your bursitis!

Unlike jinasc, Bowen didn’t work for me, but whatever you choose you should notice a difference within about 3 sessions.

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I’ve been referred for NHS physio, waiting but it’s only been three weeks.

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I went privately when I was diagnosed - there was a 3 month waiting list!

If you can afford it, it might be worth getting a couple of appointments privately - and then carry on with NHS.

Really depends how incapacitated you are - I’ve got arthritic knees and with the hip as well I could hardly walk and certainly couldn’t wait 3 months!

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The trouble is that when the bursitis is due to the PMR, physio doesn't always help as it is fed by the PMR activity.

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Think in reading these posts about prednisone and doctors I am beginning to loose it 😢 to put it mildly. The worst experience for me was a Rumi. So called. 😤

He maid me feel so,well I can’t describe how 😬

I felt he treated me like a shaleton something like that.

I wish now I had given him a rite old blasting. Some of the think they are God’s 😬.

One extremely anoing thigh is he rote a blatant lie in a report saying I said prednisone didn’t make things and better. 😱😲

I have searched high and low for that report. 😩 lost.

So I won’t see him again

Sorry I’m on my high horse again. 😬

All the best everyone.

🍀🍀🍀🍀🍀🍀🍀🍀

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