Prednisolone - Long term

[Bobbury]

I'm seeking advice.

Having been diagnosed with PM some 6 years ago, I have been taking Prednisolone

ever since and have managed for the last year to reduce to 5mg, with no symptons

which I have to say is great.

However, I would like to know whether I still have PM and how do I go about finding out whether or not I still have PM. What would be the course of action to take?

Many thanks

[DorsetLady PMRGCAuk volunteer]

The only true test it to come off the Pred and see what happens! No return of symptoms, then you can assume your PMR has gone into remission.

Obviously you cannot do that cold from 5mg, so you will have to taper down to zero. Slowly preferably- because you may feel great at 5mg, but maybe not at say, 3mg!

[pugrescue in reply to DorsetLady]

I was dx with GCA "only" a month ago. On 50mg heading for first taper in a few days. I think about 50% GCA end up with PMR? Wondering with the pred when I would have an inkling if PMR was on the horizon. Thks

[DorsetLady PMRGCAuk volunteer in reply to pugrescue]

Well certainly at the amount of Pred you’re on at moment IF you do have PMR then it’s covered.

The start dose for PMR is anything between 15mg to 25mg, so once you get to low teens if you notice any PMR symptoms then that may confirm it.

Just as a matter of interest what were/are your GCA symptoms? And what’s your tapering schedule?

[pugrescue in reply to DorsetLady]

had 6 wks of severe 24/7 headaches, scalp so sore had to sit up to "sleep" for more than a month, jaw claudication (got confused at one point with TMD), tongue had sores and hurt to move, external swelling of temporal artery in front of both ears to the point that it impacted my hearing. Thankfully no sight problems. CRP 110 and ESR 78. Started pred @50 followed by positive biopsy. I am 67 female, before this autoimmune stuff (sjogrens) started with dry eye & dry mouth 6 months ago, had not seen a dr for anything in over 40 yrs. When my system let me down, it seemed to do so in spectacular fashion. So kind of nervous what may happen next. No real problems with the pred so far, but its still early....... thank for your reply and interest. This has all been a bit frightening.

[pugrescue in reply to pugrescue]

sorry re tapering, rheumy has me down 5 mg every 10 days and see how it goes. Start that Sat, have been on 50 for 4 wks then. ESR is now 26, and CRP is good <5

[DorsetLady PMRGCAuk volunteer in reply to pugrescue]

Yes it is very frightening.

Have a look at this it may help you understand what's happening/going to happen.

healthunlocked.com/pmrgcauk...

and please come back as and when you need help, reassurance etc.

[MhairiP]

As far as I'm aware, there is no one test to prove definitively that you do or don't have PMR. I'd suggest you continue to reduce pred very slowly (there's lots of advice on here for tapering - see "tapering steroids" on the list of topics on the right-hand side). If you get to 0 with no ill-effects, then your PMR will have gone into remission.

[Bobbury in reply to MhairiP]

Many thanks for that....

[jinasc]

I have just answered on this thread 'I don't know whether to laugh or cry'

healthunlocked.com/pmrgcauk...

Take a look at it.

[PMRpro Ambassador]

You say you have "managed to reduce to 5mg" - which suggests to me you get symptoms when you try to go lower?

As DL says, the only way to find out if your PMR has gone is to reduce to zero without the symptoms returning. And from here you also have the factor of adrenal function returning. So the slow approach is required.

[Bobbury in reply to PMRpro]

Many thanks, I'll give it a try!

[Purplecrow]

I've been diagnosed PMR since Sept, 2013. I have tapered down to 2.5 on several occasions, and felt mighty smug! Unfortunately, each time, after 2 weeks of returning pain, I had to accept I am not yet out of the PMR woods.

Currently in middle of a flare, and holding at 5 mg pred., for next few weeks.

Aint life a bummer some days!!?

[Bobbury in reply to Purplecrow]

You've really got my sympathies, done that a few times and it's not good.

I'm really reluctant to reduce because of the symptoms but I'm just worried that

that being on pred over long periods is not good. I just need to get my head around trying to taper. I will do it but when is another question. It's in my head to do it, so one day when I wake up and say right, tapering starts today!!! hey ho!

[Hidden in reply to Bobbury]

I started a new taper several times on the day i felt like it. I figured i must feel good enough on those days for my body and mind to give me the permission. I never kept a record of when i succeeded on that feeling sadly.