Flare : I had tapered to 6 mg. taken since... - PMRGCAuk

PMRGCAuk
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Flare

Suffererc
Suffererc

I had tapered to 6 mg. taken since December. Then pain increased and Dr suggested I go to 10. Instant relief but not 100%. She wants me to stay on 10 mg for 2 weeks. Then taper by 1mg a month. Seems will take forever again. Dr wants me to see Rheumatologist again. Only seen once before 2 1/2 years ago. Thinks she wants me to go on different medication but I now worry about new side affects, Pred was bad enough. Dr also thinks this is a short term illness and she desperate to get me off Pred.????

6 Replies
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PMRpro
PMRproModerator

practicalpainmanagement.com...

medpagetoday.org/rheumatolo...

rheumnow.com/video/dr-kathr...

Sigh - time for some education I think!

There is no "different" medication - because you won't get tocilizumab for PMR. She may mean methotrexate - which may, or may not, allow you to get to a lower dose of pred but not off pred altogether.

You mean you have been on 6mg since December? When did it go pear-shaped? When were you diagnosed? What dose did you start at?

If it were me I would take the 10mg for 7-10 days and then try 8mg. If that still works you have saved a couple of months. But don't forget - you aren't tapering to get to zero, you are looking for the lowest dose that works as well as you got at the start. It will take as long as it takes - and nothing will speed that up. But messing about and trying to force a reduction will mean it takes much longer.

However - having looked at your past posts I think you have been pushing it for some considerable time and actually, staying at 10mg as she suggests may be what you need. Is it the doctor or YOU who is insisting on reducing when you obviously have got to too low a dose?

Suffererc
Suffererc
in reply to PMRpro

I had been tapering 1 mg a month sometimes 6 weeks and all was fine. Then I pushed myself with exercise and all went pear shaped. Dr didn't think I needed to increase, but I did to 8mg but obviously not enough and slowly things have got worse. Dr seems to be increasing her knowledge with PMR ( with her lots of patients who have it).

I am not in a rush, gave excepted it might takes 5.9 years and am nearly half way. Would just like to be on a low dose that is all.

Thank you for replying am now going into your link.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

Looking at your profile I see you were diagnosed early 2018 - so to be honest your illness has some time to run - despite what doctor may think of you may want.

Her suggestion of 10mg for 2 weeks and then monthly reductions of 1mg sounds eminently sensible to me - in fact what you should be doing. If you’ve been reducing faster than 1mg per month, no wonder you have issues.

GP is correct to put you back up and then taper by 1mg a month. This is not a race which is why there are tapering plans on here - ie Dead Slow and Nearly Stop (DSNS).

You are just over 2 years in and the median, as far as I remember is 5.9 years for remission........this does not mean it cannot go into remission earlier but............

Are you sure she is desperate to get you off pred........when she has suggested a slow taper and you are not keen as you think this is taking forever. PMR & GCA, like all auto-immune illnesses come when they want and go when they want, we just have to manage it to make the journey as easy as possible.

I would think she is wondering if Methotextrate would help if that is the suggestion, it is always your decision to take it or not. Your body, your decision.

Please try and relax, stress and worry do not help.

Suffererc
Suffererc
in reply to jinasc

Sorry if I confused peeps. My GP has now accepted that I have had a flare and is wanting me to take 10mg of pred for two weeks then taper by 1 mg a month. She has sent me for two MRI Scans, X-rays. Endoscopy. She would not accept that folks have PMR for two years and stay on Pred. I have been using the DSNS method but stuck at 6. With two raised ESR markers she agreed for me to go up to 10 and if it cleared the pain, would mean I have PMR still.

She is pretty good GP but just not on the same wavelength as HU. HU PMR this forum makes more sense and give more support

PMRpro
PMRproModerator
in reply to Suffererc

We've probably read more about it than she has - plus we have all got the t-shirt!!!

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