Taper question

[Specialised]

Hi All,

I’ve only joined you last week and I have found the help invaluable.

I have a question around tapering. I was on a 2 week dose of 50mg prednisone, reducing to 40mg for 2 weeks. The 50mg was good and symptom free, I have been on 40mg for a week now and have just started to experience some slight stiffness in the back of my neck and upper arms. It is not impacting me too greatly at the moment

Should I adopt a watch and wait attitude or should I act now and increase my dose?

Am I correct in assuming that it is the inflammatory activity increasing and if so it is unlikely to resolve by itself and in fact may get worse.

I would appreciate your thoughts

cheers

[alangg]

I'm not a medic but I have been reading posts on here for over 6 years now, and I don't think I've come across somebody who is still suffering symptoms of PMR while on 40-50mg of pred.Having said that, my regime to reduce was to stay for 4 weeks on a dose, then use a tapering plan over at least 4 weeks to very gradually introduce a lower dose. Maybe your drop from 50 to 40 was too quick.

From what I've read, I believe that the body is very susceptible to sudden differences in the dose of pred which can cause symptoms to return and even increase.

[DorsetLady PMRGCAuk volunteer in reply to alangg]

Specialised has GCA hence the high doses.

[Specialised in reply to alangg]

Thanks for your thoughts. One thing I have noticed from reading everyone’s stories is that slower the better with tapering. Time is obviously needed for our bodies to recover and try and heal. Too fast and it won’t last.

[piglette in reply to Specialised]

I think there is a happy medium. If you are feeling fine it probably is then a good idea not to stay on the same dose for months.

[DorsetLady PMRGCAuk volunteer]

I’d be inclined to go back to 50mg for a few days - usual advise is to return to previous dose in that situation.. Then once things are back under control step down to 45mg rather than 40mg. Not everyone can mange the 10mg drop.

You do need to advise your doctor though… even after the event - so they are aware.

Have a look at this re the difference between steroid withdrawal and a flare - and with the timing I’d say it was a flare brewing -

healthunlocked.com/pmrgcauk...

[Specialised in reply to DorsetLady]

Thanks for the advice. I decided to go up to 45mg and it seem a to have worked already, fingers crossed. I will stay on this for a bit. What is the usual/best time frame to stay on a dose before reducing? It seems from reading other stories 2 weeks is probably not long enough???

I will make an appointment with my GP as soon as I can ( not always easy) and have a chat with her. I did ask at the outset what to do if symptoms returned and she advised me go back to the previous dose. I also have an appointment with rheumatologist the end of March. Not sure what it is like in the UK, but it can be difficult to get an appointment with any medical person when you need it.

I will have a read of the article. Thanks.

[DorsetLady PMRGCAuk volunteer in reply to Specialised]

Good to hear 45mg has helped.

It is easier [sometimes] to reduce on GCA high doses, but 2 weeks is usually not enough in most cases [whether GCA or PMR]. It can take that long for a flare to appear.

Most of my tapers were between 3 and 5 weeks -and fortunately fairly straightforward-

80mg - 2 weeks [once confirmed sight in remaining eye was okay]

60mg - 8 weeks

55mg - 2 weeks

50mg - 3 weeks

40mg - 2 weeks

30mg - 3 weeks

25mg - 4 weeks

20mg - 5 weeks

[PMRpro Ambassador in reply to Specialised]

I'll not add to DL's advice, I would say exactly the same, but I'm surprised you can't see a rheumy more quickly with a diagnosis of GCA, There is a world shortage of rheumatologists but do they make a stroke or heart attack wait a couple of months to see a specialist? GCA is also classed as a medical emergency.