I used to read on this site a lot, but as my tapering was going so well - I didn’t .
However I tapered to zero last year around October time - 4 weeks later I had chronic hip pain on both sides and terrible knee pain- it felt quite different to previously.
Thereby started six months of pain- but they couldn’t find anything wrong- bloods normal!
My consultant finally sent me for a pet scan!
hurrah- they found inflammation which was indicating Polymyalgia! I thought this might be useful for some of you if your bloods are normal.
I refused to go back on oral steroids, so my lovely consultant said we would try intramuscular injections every 8 weeks or so- gradually tapering by 20 mgs. I started at 120mgs and felt great the next day Also there is no moon face - no neck hump , bruising, insomnia etc - it’s win,win - I have but on a few pounds but nothing like the one and a half stone I put on before!
I hope this post might be useful !
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Nordicwalker
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Sorry to hear that. I do hope you get on well with the injections as they can be good but it is quite dependent on getting them in a timely manner - who is doing them for you? Eight weeks is quite a gap - Prof Dasgupta used them about monthly but some people run out of steam after 3 weeks.
If you had come and asked us last year, we'd have said immediately it was PMR that wasn't as burnt out as you thought when you got off pred, That is why we say VERY slowly for that last 1 mg - 1mg can be plenty to keep things under wraps but zero is simply a step too far.
What would be lovely to see is a paper about it, even just as a letter to a Journal, reporting the fact you had a PET-CT showing PMR without raised markers. We have said quite often that after patients have been on pred there is no guarantee they will mount the acute phase response again despite a PMR flare. No idea why, it is just so.
DIdn't know there was one to be honest. I'm just going by the study Dasgupta did and which has never really been followed up so would be interesting to know where that comes from.
A few people have asked for injections and their rheumies have made a right pigs ear of using them so it would be great to see an "official" protocol from anywhere.
Should have added - many hospitals have their own protocols, and all I can find is guidelines for injections for joint and soft tissue problems. They are usually limited to every 3 months - and that is no good for PMR.
In fact, the 2015 Recommendations for the management of PMR does give a suggested protocol - 120mg every 3 weeks!
"5. The panel conditionally recommends considering intramuscular (i.m.) methylprednisolone as an alternative to oral GCs. The choice between oral GCs and i.m. methylprednisolone remains at the discretion of the treating physician. In one clinical trial, a starting dose of 120 mg methylprednisolone i.m. injection every 3 weeks was applied."
There is more detail further on in the text under Recommendation 5.
That's my point - it doesn't fit with the international guidelines from all the various associations of rheumatologists. And if they reckon every 3 or 4 weeks is the time between injections - I am left to wonder who thinks they know more about it than the international experts!!!
I think you'll probably find eight weeks is too long between injections. I have been having them every four weeks (since June last year) I'm due for one tomorrow and I know I'm ready for it because my shoulders and arms have started to stiffen up over the last couple of days which is usual for me. Professor Dasgupta's trials used three weekly injections ( for some reason my GP agreed to four) They really are a miracle for me. The only downside is if you have a flare, I've had one, when you havec
Sorry, computer decided to post beforeI'd finished.....To continue, if you have a flare you'll have to get Dr to increase dose of injections fora while (I've just had 3months back on earlier dose) so not instant like pills. My buttocks were getting tender too so I alternate with injection into bicep which was a lot more comfortable. Very best of luck to you.
The 2015 Recommendations (I think) suggest starting with 3-weekly for the first 9 weeks and then switching to 4-weekly, effectively a taper by extending the time 120mg should last.
Pmr pro I have a question relating to this response. Does the same apply to reducing pred for GCA? IE that just 1mg could be keeping the disease at bay?
She got to zero pred - while also on Actemra injections - and her GCA came roaring back. She also mentions someone who had problems every time she tried to stop 1mg so stayed on it for 22 years!!!!
Oh wow! I'm just on pred. My consultant said it may be I have to stay on a low dose. Let's see. I'm currently diagnosed adrenal insufficient so going super slow.
Most people DO get off pred and never have to deal with GCA again - DorsetLady is one - but there are no guarantees. As I mentioned, even Actemra isn't aperfect answer, about half of patients require some pred ongoing as Actemra only works on one of the 3 or more underlying causes of GCA inflammation and the pred deals with the others.
So interested to read this thread. I’m currently on Leflunomide to “aid” Pred for my GCA, but not particularly enjoying it ( hair coming out in handfuls and so on ) … but as I’m taking it because of the flare I had after stopping TCZ, I feel stuck. Just struck by the thought of being on some level of Pred forever…yikes
I'm on TCZ for PMR (because I can as I live in Italy) but even so I can't get under 7mg pred and even at that have flared a bit recently. I've been on pred for over 15 years, could be 16 now, not sure. I don't find it in the least daunting - it has given me a life.
I had very similar recurrence of severe knee & hip pain after I had tapered to 0 mg last year. Xrays proved that it was not OA . Against the wishes of my GP I started on 5mg Pred again and the pain miraculously went, letting me walk again. A different GP at the practice said I should start on 15mg and taper as before. I am now down to 3mg after some very rapid reductions and intend to go very slowly indeed to get to 0mg- if ever.
My blood tests showed none of the usual inflammation markers which might have been the reason my GP said I should not be taking steroids again even though I was in such pain. She really thought the steroids were masking OA.
Why on earth did they want you to start at 15mg again? You can start anywhere as long as it is enough. This preoccupation with unreliable markers and pred "masking" OA does us a real disservice I think.
I did what I was told, having had a telling-off for starting steroids again by GP Number 1 and having had to beg for a repeat prescription at the surgery from GP Number 2 who said to start on 15mg again.
I thought 15mg was excessive, so I stayed there for only 1 week, went down to 12.5, then 10 then 7.5 and then 5 in the next 4 weeks. They were supposed to do a follow-up call, but it never came.
I started slowing down when I got to 4mg and am going slow now because I don’t want to be crippled by a mega-flare like last time. The PMR seems quite under control now.
There seems to be a disconnect at our GP surgery as we never get to contact the same one twice.
Well done you - you know more than they do!! I was watching a programme earlier today where a patient said the same thing and got a very testy response from the GP they were talking to that OF COURSE they could see the same person for continuity but might have to wait a bit longer for the appointment. So would that now mean 6 months instead of 3 weeks?????
The system here is really good for that - one GP who also answers the phone!!!! Same day consultation - turn up and wait. How old-fashioned - but works for me.
That's great news. It would be interesting to know where the inflammation showed up on the FDG-PET/CT scan. Was it only in the vessels serving the knees and hips where the symptoms were, or more widespread? As PMRPro says, that scan and your normal blood tests are newsworthy!
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Finally reached zero preds!
Tapering - have I got it wrong?
The next step....
GCA or prednisone? 
Consultation today
