Suggestions please

[Soon70]

I was on 7mg of Prednisolone for many months and doing quite well. Then following the stress of months of Restless Leg Syndrome and sleep deprivation I believed as a result that I had a PMR flare and increase my Pred to 15mg for 10 days. This did have moderate results but not enough to continue on that higher dosage. I cut down to 12.5 over the following 7 days but now want to reduce back to 7mg as soon as possible. Any suggestions as to how this can be achieved successfully. Thanks in advance

[PMRpro Ambassador]

Since you are not looking for the lowest dose that manages your symptoms there is no aspect of finding the "exact dose". Since you haven't been at the higher dose for long you should be able to reduce quite quickly - say by 2.5mg to 10mg for a week or two and then to 7.5mg. If you want to reduce the impact of the drop, alternate old/new for a few days in between. Some people are able to drop in 2.5mg steps, by alternating the old/new you are dropping in 1.25mg steps. It is only by trying that you will see if you can tolerate it. If you find it doesn't work then drop 1mg at a time and spend a week at each dose - again, see how you get on. As ever with PMR there is no one size fits all but usually if you increase the dose for just a short time the reduction shouldn't be too bad.

You don't say what made you think it was a PMR flare - some things that go along with PMR and can easily be confused can be managed well with therapies such as Bowen or manual mobilisation techniques - it does depend what it is though.

[Soon70 in reply to PMRpro]

Thank you so much for your helpful reply. I had lower back pain on one side together with groin pain on the same side. I have now been diagnosed with sacroiliac joint dysfunction which would account for these symptoms. I have been having treatment from a chiropractor and hopefully things will be resolved together with the restless leg syndrome which is hell on earth! If this doesn't help my next port of call will be physiotherapy. Terri

[PMRpro Ambassador in reply to Soon70]

Been there, done that - I did wonder which was why I asked. I'd suggest adding Bowen therapy to your chiropractor if you have the opportunity. I had an osteopath and Bowen therapist who between them kept me upright for 5 years with PMR and no pred. I now have found a Bowen therapist where I live here in Italy - when I was unable to get that the back problems accrued until I ended up in hospital with sacroiliac joint dysfunction. It was NOT a nice experience! I reacted badly to the standard therapy but the alternative with a pain specialist, manual mobilisation and now Bowen worked.

Hoping for a pain-free future for you - because I know how much it hurts!

[Classicmichael in reply to PMRpro]

Hi PMRpro, l keep a chart showing Daily doses of pred and make a note of my symptoms with my own code, example BD is bad day NTB not too bad BP bad pain GD good day.

These symptoms have been largely uncontrolled by the steroids and as soon as l have a few good days l step the dose down, pain gets worse and l increase it, and in the 18 months that l have had these symptoms (started six months after GCA diognosed May 2013 Esr 44 down to normal within hours of starting 60 mg pred with huge improvement of temple pains and dreadful sweating)

During this 25 month period l have had three nasty GCA flares taking me back to square one. A bit like snakes and ladders but a lot nastier.

Early am waking pains, sweats and utter exhaustion most of the time have left me thinking it was PMR and as l sit here fevourish and in pain l do wonder what's happening to me.

I have decided to bite the bullet and reduce with pain relief and see where this journey takes me.

Thanks for your support PMRpro

Mike

[PMRpro Ambassador in reply to Classicmichael]

Fingers crossed they come up with something Mike - I can't even begin to imagine how you get through this from day to day. All the very best.

[Celtic PMRGCAuk volunteer]

Soon, unless you were certain you were experiencing a severe flare in symptoms, that does seem an unnecessarily large increase in dose right back to the recommended starting dose of 15mg, especially after having done so well for so long on 7mgs. I'm also not quite sure what you mean by saying that you did have "moderate results but not enough to continue on that higher dosage". I'm wondering whether there might have been something else going on or even that you may have overdone things that resulted in complaining muscles. How you now return to 7mgs really depends on how you are feeling PMR-wise. If you had raised ESR and CRP blood markers at diagnosis, then repeat tests can be used as a guide. Following the worst of my flares and an increase from 3 to 10mgs, I spent 2 weeks at 10, then 2 weeks at 7.5, then 2 weeks alternating 7.5 and 5, followed by many months at 5mgs as that was the dose where things had started going pear-shaped previously. So using a similar pattern, you could try reducing to 10 after two weeks at 12.5; after a further two weeks you could try alternating 10 and 7.5 for another two weeks. Depending on how you feel you may then be able to return to 7.5 each day. If that works, don't be in too much of a hurry to continue reductions but remain on 7.5 for a good month, eventually continuing by tapering in 1mg decrements on just one day of the first week, two of the second, etc.

[Soon70 in reply to Celtic]

Thank you for your reply and helpful advice. My doctor suggested 15mg. As previously said pains in lower back and groin led me to believe it to be a PMR flare but now diagnosed with sacroiliac joint dysfunction so hope to get that resolved and at the same time reduce the Pred.

Terri

[Celtic PMRGCAuk volunteer in reply to Soon70]

Ah, so it was something else going on rather than PMR. Perhaps a cortisone injection into the sacroiliac joint might provide better relief if the chiropracteur doesn't help.