PMRGCAuk
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Visit to see specialists

Jura1959

Well had to visit the specialist at Nuffield orthopaedic hospital yesterday 22/2/18 got really knowledgeable doctor who had ultrasounds preformed on my temporal region's head and underarm and rest assured myself that the scans were all clear and no signs of Gca yipppe.

The only thing concerning the doctor now is the level of pred so has now worked out a program to reduce fairly quickly down too 10mg from 30mg over 4 days by reducing 5mg each day till 10mg is reached then too reduce by 1mg every 4 weeks going down too 10mg in November.

But I must stress that she is very keen in me following this plan because she has said if I now experience any pain I had the first time round I'm too contact her clinic and get an appointment to see her to assess if there is any other medication I could be on but this could not be done on the amount of pred I'm taking at present so will try and keep all updated.

And is there anyone from Bicester /Oxfordshire Areas

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Ooh cripes!

You might as well book that next appointment now, coz I can guarantee you’ll get pain! Withdrawal pain if nothing else, and how on earth will you know at what level any PMR pain resurges?

Prior dose 30mg

Day 1 25mg

Day 2 20mg

Day 3 15mg

Day 4 10mg and stay there for a month.

Is that right????

I’m assuming she’s considering methotrexate? I thought the idea was to go on that to aid the reduction, not to reduce and then go on it. IF you succeed with the reduction there’d be no need to be on any other drugs.

Was she a rheumatologist or an orthopod?

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Should have said.... GREAT news re no GCA!

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Gosh yes I missed that. You still need to taper slowly or you will feel rotten. Choose one of the taper programmes on the site.😱

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Rheumatologist I believe

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I am relieved for you Jura. Better safe than sorry.

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She's crackers. No, you don't need 30mg and you will get to 20mg OK and probably 15 without too much trouble even at that rate - but to keep going to 10mg is nuts unless you were on 10mg before the GCA scare and going up to 30mg. It also depends how long you have been at 30mg - which I can't work out and your taper doesn't make sense either since you mention 10mg twice.

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Is the second 10mg meant to be ‘going down to 1mg in November’? The maths is right.

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That makes it even more crackers...

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As I said, the maths is right.

My second sentence wasn’t suitable for public viewing.

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Hi pmrpro

Back in Jan 2017 the start of this horrible illness I was put on a 15mg dose reducing down to 12.5 after 4 weeks then by 1mg every 4 weeks till on on 0mg but pain started up again within 3 weeks so doctor put me back on to 15mg again for round 2 and just around Christmas 2017 I was really suffering with flu like illness very bad stomach etc really bad head pains so doctor in his wisdom put the pred up too 30 mg tillmy visit to see specialists and have ultrasound which was all clear but specialists is now saying she wants to be able to reassess the pmr and is unable to do that due to level of pred 30mg I'm on so wants to reduce quickly to a more manageable level and says if pain returns I'm to call her clinic and go straight to her and not go so here is hoping day 2 of her plan and I'm now on 20 mg 24/02/18 and down to 15mg on 25/02/18 and down to 10mg on 26/02/18 then reduce by 1mg every 4 week's fingers crossed 😊

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Ok, fair enough. If only GPs would phone a rheumy friend when they have a patient they think might have GCA - it would save the patient a lot of discomfort.

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Hi Jura 1959

I live in your area (Filkins just south of Burford) and so I too go to the Nuffield. Sounds like you have seen Lorraine who I saw at the start of my GCAPMR (have both) journey back in August 2016. The team are very good and the ability to ultrasound is a real bonus but like a large number of the medical professionals involved they do want to reduce the Pred dose very quickly - far too quickly as the Aunts and my experience will tell you. The slow reductions chronicled on this site are much more effective and after a flare up last summer I agreed with them a much slower reduction period with some pauses in between. Being a numbers person i devised my own schedule rather then the ones on here using a moving average. That seems to have worked much better so far and is probably half the speed of the first cycle. The one thing I have learned from this forum and my own experience is to listen to my own body and react according to what it is telling me. We all seem to react differently to both the condition and the medication and understanding that it is all about managing and responding rather than curing or ceasing medication is the biggest lesson I have learnt.

You will find that both Lorraine and Prof Luqmani are quite open to discussing your progress and treatment and, with a good GPs support, you can take more control yourself.

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Jura1959 been thinking of you and your speedy reduction.... How’s it going?

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Hi Soraya

Down now too the 10mg dose which I'm now to take for next 4 weeks so far so good just hoping I don't get major flare up 😯 looking at return to work around 14th March if all gose well although I get sick pay for 12mth I'm very frightened they may try and force me to retire early which I can not afford to do really is worry knowing which way to turn 😕

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