I would really value some advice. I have had PMR for two years and have done pretty well in my journey. I was 51 when I was diagnosed. I am now at 3mgs pred. Have been working full time in a demanding job and living my life at 80% I would say. I have had difficulty getting below 3mgs as I kept getting problems with my hips. Stiffness, pain and not being able to lie on my side. Having read back through this site and when really thinking about the pain I realised that it was different to my original PMR. Saw my GP and Bursitis was confirmed following examination.
My bloods are all normal and I start physio on Monday. Have been taking brufen 3 times a day and I am a new woman!!!
I am keen to see if a reduction to zero prednisone confirms my theory that what I thought was PMR threatening to flare was bursitis all the long.
If this is true what would be a safe reduction plan to get from 3 mgs to 0. Obviously I will be looking out for the signs of a flare as I do it.
All auntie and uncle advice welcome!
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JulieR2
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I'm on 5mg and going down in 1/2mg steps. Currently doing an extra 4 weeks at 5mg, just to settle it in better.
I'm taking gastro resistant pred so the 1/2mg steps are easy to sort out without cutting tablets. No reason your doctor can't give you some. I take them at 10pm.
Don't know what I'll do going below 2mg, most likely will have to cut, but that is a while away yet.
When you’re ready to go below 2mg you can always try alternate days 2mg/1mg one of my Consultants used to recommend that way at higher doses but same principal would apply. 🍀
I’d say steady as she goes to be honest, 4-6 week reducing at 0.5mg.........
I know you must be keen to get off them now but l think it’s more a case of the Hare & the Tortoise but see what others think. Has your GP made any recommendations re the Pred?
Thanks. My GP is really at arms length. She is there if I need her but to be honest has left me to it for the last year. My Occupational Health team are really helpful and as they are on site and part of my team they do my bloods now. To be honest I hadn’t expected such a good reaction to the regular brufen so didn’t discuss with her. I can ring the pharmacist at the surgery Monday. Our practise has much more of a multi disciplinary approach
Yours is a heartening story! Good for you, there must have been some difficult times. Personally I would get my pill cutter out and treat that 3 mgs with the greatest respect. It is not harming your health but may just be holding remaining inflammation at bay.
Try this plan - if necessary only tapering 0.5mg a time.
You may be keen to see if a reduction to zero confirms bursitis rather than a flare, but no rush. The small dose/doses you are on are doing no harm, but may be doing more good than you think.
Plus it’s not just a matter of PMR or bursitis - your adrenals glands need all the help they can get as well.
What is the reason you are taking brufen? It is actually recommended that it should not be taken with pred as they are contra indicative. Also if it is working it is likely it is helping something else rather than the PMR, as PMR seems to only get helped by pred.
Hi I am taking the brufen for bursitis. So I think the PMR may have actually got better. The fact that my hip pain has responded so well indicates exactly what you suggest. I am keen to stop the pred but advice reminds me to take it slow.
Greetings Julie. I just caught your Post - and can relate..
My opinion (for what it's worth..)? You've done very well both to keep working / Living Life at 80% and reducing the Preds to quite a low level after just 2 years - well done!
If your hip pain is due to Bursitis - where the PMR inflammatory stuff concentrates itself in a particular area of the body - by implication (?) your PMR is probably still lurking around in one form or another (sorry..). I know it well.
As for a further / faster tapering schedule? I know it's tempting, but I think the others here have said it all. Only to say, don't be tempted rush things even at these low-ish levels and with the help of Physio / pain killers etc. From all wot I've learned here, even at low levels of Pred (although seemingly insignificant), a gentle tapering gradient is often still important in the weaning-off process.
It's probably best to continue on the DSNS (or equivalent) so that you hopefully have a gentle landing at Pred Club Zero - whether sooner or later. As many of us know and / or research suggests, the course of PMR disease activity has a mind and timescale of its own (i.e. Heterogeneity), regardless: and so the main aim is to manage the (whatever) symptoms with the Preds until or unless it gives us a break / goes into remission.
Or.. you could try the little-known MBTD (MB Tango Dance) Pred Tapering Method? I.e. 'Slow, Slow, Quick-quick-Slow'? [Note: Only joking - Do not try this at home].
Either way, keep Positive and keep Us Lot posted..
Thanks Mark I did see your quick step and was tempted!😂 But I will carry on with the sage advice and stick to our wise Dorset Lady’s dead slow method. I feel so well and it’s so tempting but if I crashed now it would be so awful! My plan is to be back to full health in a year! Possibly,maybe, perhaps😂 I have been relatively lucky but do now have a smaller bank balance thanks to all the miracle cures I bought ( that didn’t work) and my shiney new tooth implant and 24 visits to the dentist last year! This condition hits us all in similar but different ways and my experience is patience and massage are the only things that have worked for me. I just need the reminder on the patience now and again! So thanks everyone
Yes I did, in both hips. It was diagnosed via an MRI pre PMR diagnosis when they were trying to figure out what was wrong with me. I met someone who cured her hip bursitis using very expensive custom made orthotics & I was trying that rather than having the recommended steroid injections. The orthotics did give a lot of relief & I stopped limping, but unfortunately GCA took over & was diagnosed along with PMR before I could complete my trial.
An accurate diagnosis is key to dealing with problems. I had PMR for 2&1/2 years, but after being diagnosed with repeated flares, asked for further investigation into my hip pain. I observed it was not equally bilateral even though both hips hurt. After Xrays it was diagnosed as osteoarthritis. 14 months on, I still have PMR, tho have reduced down to 5 mg Pred per day, and 2 hip replacements. So, no arthritis pain, though my mobility is still “in training” due to muscle weakness after so long with limited mobility.
A safe reduction plan is listening to your body, only reducing when you are well and using DSNS.
Thanks so much. Sounds like you have really been in the wars. Hoping that I loan get the bursitis to settle and then carry on reducing as advised. I am sure I have early arthritis so am trying to loose weight too.
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