discomfort or??

[Fishtacoqueen]

I am currently on 8 mg after tapering from initial 15 mg dose after PMR diagnosis and almost Immediate relief of symptoms. I have tapered from 15 to 12.5 to 10 and then by 1 mg each month afterwards. I don’t have the PMR pain I had at diagnosis but I find when I wake up in the morning I have some neck discomfort ( not pain)on one side of neck and a little discomfort behind one knee. In your collective wisdom could this be the indication that I may be getting too low a dose? I guess I’m wondering if I should expect no discomfort at all or if a little bit is ok and just carry on.

I do appreciate the great advice in this forum.

[piglette]

There are a few lucky people where steroids work 100%, but for a lot of us that is not the case. You should not have worse pain than you had when you first started taking the steroids though.

[Fishtacoqueen in reply to piglette]

Thanks. Pain is nothing compared to what I had before. I guess I’m just wondering if some discomfort is to be expected and this isn’t a sign of a flare.

[DorsetLady PMRGCAuk volunteer in reply to Fishtacoqueen]

Does sound a bit flare -ish -even though it’s only one-sided at the moment. You have got to 8mg a tad quicker than many.

So maybe go back to 8mg initially and see if that helps. It you catch it quickly you may be okay -but this link explains what to do if it does become a proper flare (hopefully not) -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

As I just wrote on another thread:

You are NEVER reducing the dose relentlessly to zero. The pred cures nothing, it is a management strategy so you start with a springclean to mop up all the accumulated inflammation in the soft tissues and then you taper slowly in a process called titration to find the lowest effective dose, the lowest dose that works as well as the starting dose did. You do that just like you did in chemistry at school - the first time you keep tapering until the symptoms start to appear and then you go back to the last dose that was good, Once symptoms are there, you often need the cleanout first before the low dose is enough to leave you with minimum pain.

As already said, you are aiming to maintain the level of symptom relief you got with the starting dose. During any taper step you should never feel worse at the end than you did at the start.

The morning niggles suggest the dose you are on isn't quite holding for the full 24 hours until the next dose is due. Either you need a smidgeon more or maybe splitting the dose would extend that effect with the same total dose. The new batch of inflammatory substances is shed in the body at about 4-4,30am. The antiinflammatory effect of pred lasts from 12-36 hours, depending on the person. if you are at the shorter end of the range you may feel it. As long as they go after taking the pred then you are probably fine but it is suggesting you are on the cusp of the dose you need and I wouldn't continue to taper for the moment but take a holiday from reducing for a couple of months. Then try again, sometimes it works but if it doesn't - it will eventually.

[SheffieldJane]

you can’t just zip down the doses unfortunately. I would return to 8 mgs or 10 mgs and give your body a rest for a few weeks - maybe 6 weeks. You made a lovely start, it would be a pity to spoil it. As PMRPro says, we are not racing to zero we are carefully seeking the lowest possible dose that affords relief. I tapered by half a mg after 10 mgs, I needed to.

I didn’t see that PMRPro had given her wisdom.

[Fishtacoqueen in reply to SheffieldJane]

Thanks for all the advice. I wasn’t sure if I should be accepting that there could be some discomfort or not. I had absolutely no sign of symptoms after starting prednisone up until now. I think I might up my dose by 1/2 a mg and see if I go back to zero discomfort. Give it a few days at that and then slowly go down again..

[SheffieldJane]

I think you can aim high, you got maximum relief before.

[Zebedee44]

The split dose that PMRPro has suggested would probably reduce your morning neck pain and give you a more comfortable start to the day. I managed my own PMR for years by doing that so I could get out of bed in the morning and move. At 8mg I would take 3mg at bedtime and 5mg in the morning. Maybe give it a try, and don’t rush to the next stage too fast.