recently diagnosed.

[Mario66]

hi, I was diagnosed with PMR in September. I have tapered down to 10mg of pred but finding I’m in a lot of pain in the morning and this is lasting until at least lunchtime. Is the usual? It was very similar on the higher doses too. I am trying to be active and I do start to feel better in the afternoons. Any advice would be helpful. I was very active before the diagnosis and I’m getting a bit down with the pain and reduction in mobility.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Going to suggest you have a read through my information post - which may answer some of your concerns-

healthunlocked.com/pmrgcauk...

It also contains a link to learning to pace yourself with an autoimmune diseases - something most patients find difficult early days.

Also explains why you have pains in morning....but would say if you've always had them, then you may not have got your PMR fully under control right from the get go. So that is not going to help.. you may find you need to increase your dose a little to do that... and that is most important thing...PMR very easily gets out of control if you are on a dose that too low...and t doesn't take much for that to happen.

Some find taking Pred in a split dose -approx 1/3rd bedtime, 2/3rd breakfast alleviates that morning issue - all all at around 2am if you wake for a comfort break. Options, but if on enough you may not need to consider...

Just another point, your starting dose may not have been quite enough...but that's water under the bridge now.. not too late to get it back under control though.

[Mario66 in reply to DorsetLady]

thank you, I’ll have a read and consider trying the split dose to see if it helps.

[DorsetLady PMRGCAuk volunteer in reply to Mario66]

Okay... it may do, but just remember not enough is not enough no matter how/when you take it.

Good luck and let us know please.

[Alebeau in reply to Mario66]

It helped me tremendously.

[PMRpro Ambassador]

What time do you take the pred? Have you ever tried splitting the dose?

In some people the antiinflammatory effect doesn't last for a full 24 hours and the symptoms reappear before the next daily dose is due. The ideal time to take pred is 2am - the morning agony never appears in the first place but sometimes might then appear late evening or overnight. Then splitting the dose may halp, about 2/3 in the morning and the rest late enough in the day to carry the effect over to the next morning. Even taking it with lunch can be late enough, it doesn't have to be in the evening.

[Mario66 in reply to PMRpro]

thank you, I’m going to try splitting it to see if it helps. I’m taking it about 7am at the moment.

[PMRpro Ambassador in reply to Mario66]

See how splitting goes - and tell us how you get on. It can be trial and error initially.

[Mario66]

thank you for the suggestions, I’ll let you know how it goes. Really helpful as the dr hadn’t suggested this.

[DorsetLady PMRGCAuk volunteer in reply to Mario66]

No...and that's because many don't know.. the average GP is more used to prescribing Pred on a short for basis for acute incidents in asthmas or COPD for example... and not long term for PMR and/or GCA.

[Jigsawlass]

When I was first diagnosed I went from 15mg to 12.5 then 10mg which seems to be a standard initial reduction. It was too quick for me so I went back up to 11mg for a month before going to 10mg with no issues. Activity wise , it is really tough but you do need to pace yourself-I have learned the hard way. A 5 mile walk was nothing pre PMR but I soon found out that if I attempted that I would be wiped out for days . It really is the most frustrating aspect of PMR and mentally/emotionally the hardest thing to deal with x

[alangg]

You don't say what dose you started on in September. If it was only 15mg, then your reduction has been fairly steady but if you started on a higher dose, I would suggest that your reduction might have been a bit quick if you are down to 10mg after only 2.5 months.

My mantra on PMR and pred is 'slowly, slowly, catchee monkee' (which might not be PC nowadays!) but I started on 15mg and was probably only down to 10mg after 4 months. It took me nearly 3 years to get to zero but I never had a flare and never had to go back up. So, take it slow - it's not a race to zero; the aim is to be PMR free at some time in the future.

[Mario66]

hi, yes I started on 15mg and did ok in that dose and 12.5mg, but as soon as I try to reduce to 10mg, I seem to be back where I started.

[PMRpro Ambassador in reply to Mario66]

Then try 1mg - 2.5mg at a time is quite a big step.

[MiniSpec]

As others have said, the percentage difference when you taper is very important. Try to keep it well under 10% each time so that your body can adjust, and don't rush it. So if you started on say 20mg per day, don't attempt to reduce to anything less than 18mg per day (which is 10%) or you'll suffer.

If you started on 15mg then don't reduce more than 1.5mg (which is 10%), so 13.5mg, not 12.5mg. Furthermore, stay on the new dose for at least three months to let your body recover before attempting to taper any further. As Dorset Lady and PMRPro have set out in the past, use the DSNS (Dead Slow, Nearly Stop) method! It works.

If you get down to something like 4mg then remember that trying to drop to 3mg means you'll be dropping by 25%, so go in baby steps, i.e. 3.75mg, then 3.5mg, etc. If this means learning how to cut a tablet into quarters then get a good sharp model knife.

[Mario66]

thank you. All this information is so helpful.