Please recommend me a dose!

[Jontie]

Hi. Been on steroids for pmr for 4.5 years. Was down to 3.5mg and pain free. Two weeks after reducing to 3mg the neck ache started to return. This coincided with my annual telephone consultation with a radiologist who said my crp was 27 and my pv was 1.99. He said to increase dose to 5mg for couple of weeks. I've done this, but crp has only come down to 26 so I guess I need to increase dose more. However, I won't see rheumatologist for months, and my gp has nothing to do with me as he says I am under the care of rheumatology. Therefore I need advice on an appropriate dose to try please. 7.5mg perhaps? Frustrated as I'd got so low and it will take me months to get that low again. Many thanks.

[123-go]

I sympathise with your frustration! Does your rheumatology clinic have a helpline, Jontie? You may be able to access the specialist nurse through your consultant's secretary. Has the neck pain decreased at all since upping your dose to 5mg?

[Jontie in reply to 123-go]

Good idea. I just tried and they close at 3, but I'll try in the morning. Thanks

[PMRpro Ambassador]

Increasing the dose BY 5mg rather than TO 5mg is what I'd have suggested on the basis of rheumy recommendation - you need enough more to clear out the build up of inflammation first. I would try 9mg (maybe even 10mg for ease) for 7-10 days and then drop straight back to 5mg to be sure that is still enough - you have to distinguish between this being because you have overshot "your" dose and a real flare in disease activity because that is always a possibility you must bear in mind.

Your GP sounds worse than average - he is supposed to be there for day-to-day problems, Especially at present.

[Jontie in reply to PMRpro]

To be fair, the GP literally just phoned me. He didn't really know what to advise but was prepared to take his lead from me! So I told him what you wrote and he was happy with that. 8.5 for two weeks and then redo bloods. Hopefully that will do the trick. If so, can I drop straight back to, say, 4mg after?

[DorsetLady PMRGCAuk volunteer in reply to Jontie]

See how you feel after the 2 weeks……bloods are not the be all and end all….it more about symptom control. If you feel okay, then you should be able to drop back down to 4mg, but if you’re not sure, then maybe 2 steps, down to 6mg for 5-7 days, then down to 4mg…staying there for 3-4 weeks before commencing tapering plan.

[Jontie in reply to DorsetLady]

Many thanks

[Blearyeyed in reply to Jontie]

Even if you feel OK after the two weeks don't jump straight down from the 8.5mg to the four reduce it over a number of days so you don't suffer from rebound pain and need to increase it back up again.

[Jontie in reply to Blearyeyed]

Thanks. That makes sense

[PMRpro Ambassador in reply to Jontie]

As DL says - yes. But don't be blinded to the possibility you might need more pred. It happens.

[DorsetLady PMRGCAuk volunteer]

Main question, how are you feeling? That is what you should be taking notice of….7.5mg does sound reasonable, but you do need advice from Rheumy department. And if it’s a “normal” flare, then you should be able to get back down quite quickly once it is initially under control.

See this link - healthunlocked.com/pmrgcauk...

[Jontie in reply to DorsetLady]

Thank you Dorset Lady.

[Jontie]

So I've been taking the inreased dose (10mg up from 3.5mg) for 5 days now and my neck ache feels the same. I am supposed to arrange a follow-up blood tests (CRP and PV). How long should I leave it for before doing this? Would an increased dose normally improve symptoms within a week - I'm sure it has for me in the past.

[PMRpro Ambassador in reply to Jontie]

Has it improved anything? I get problems with the sternocleidomastoid muscle - and oral pred doesn't really help.

[Jontie in reply to PMRpro]

It was only the stiff neck that was a problem really (is this the sternocleidomastoid muscle?). And I've had much worse neck problems in the past. But no, the increased pred doesnt seem to have improved it. Perhaps it has reduced the CRP nevertheless? Just wasnt sure how long to leave it til repeat bloods.

[PMRpro Ambassador in reply to Jontie]

medicalnewstoday.com/articl...

physio-pedia.com/Sternoclei...

disc-me.com/stripping-your-...

[DorsetLady PMRGCAuk volunteer in reply to Jontie]

“Would an increased dose normally improve symptoms within a week- I'm sure it has for me in the past.“..

Problem is not very flare is exactly the same, and the more you have it seems to be more difficult it is to get under control, so you may need a bit longer.

You can stay at the higher dose for up to 2 weeks without causing an issue in dropping back down - so maybe give it a bit longer. …and organise a blood test for about week when you will have been on increased dose for 11 or 12 days.

[Jontie in reply to DorsetLady]

That makes sense. Thanks. I'm eager to see if CRP has improved, but I don't want to get bloods done too soon, possibly before increased dose has had a chance to take effect.

[DorsetLady PMRGCAuk volunteer in reply to Jontie]

Of course you are….the problem with CRP blood test is that it reflects ALL inflammation not just from PMR…so sometimes can be a bit of a red herring…I know from personal experience when GCA in remission - never 100% sure what caused it, but combination of 2 replacement surgeries within 6 months and a short sharp bout of flu thought to be the issue.

But any inflammation is concerning.