How long for Pref to start working

[Dave_Dee]

My wife was diagnosed with PMR and went into Pred for 1week but no real improvement. GP has taken her off it now and she has a two month wait to see a rheumatologist. Can anyone tell me if 1week was long enough to see results?

[SheffieldJane]

Two weeks would have been better. I hope she gets the correct diagnosis soon. In many ways the uncertainty is the worst part. By no means everyone has the overnight Pred miracle. When you say there was “ no real improvement “ was there a bit of one?

[SnazzyD]

It is possible that 15mg wasn’t high enough, many need more. Was there even a glimmer of improvement?

[Mary63]

What dose was your wife given?

[DorsetLady PMRGCAuk volunteer]

As others have said, not long enough, and maybe not high enough.

As others have said was there any improvement?

Can she contact GP, and request another trial (for longer) whilst she’s waiting to see Rheumy. Plus another blood test to check inflammation markers might be useful.

[Dave_Dee]

Thanks for the feedback. She was on 20mg, and she feels there might have been a very slight improvement right at the end but she wasn't sure if this was just 'wishful thinking ' As I am sure you have all gone through at some stage, she was desperate for something to make a difference. The doctor was convinced this was not enough to warrant staying on steroids during the COVID situation.

She is now on Naproxen and Codeine until the appointment but it is not very helpful. Any tips for alternative pain relief welcome, we have tried everything from Tiger Balm to a TENS machine!

[Vaggers]

15 mgs didnt work for me at all but 40 mgs did! I am now 10 months on from PMR diagnosis and have managed to taper down to 6 mgs. Naproxen and codeine did not resolve the pain for me. Hope you get some answers soon.

[PMRpro Ambassador]

It depends on what the starting dose was. It has to be enough or it won't work at all. Even 20mg may not be enough and some people simply don't react as quickly as others so the 1 week suggestion that has become traditional is also not long enough. To be fair - the GP is following what has been best practice for a long time.

However, the most recent Recommendations from 2015 extended the starting dose to "the lowest effective dose in the range 12.5-25mg", detailed in Recommendation 2.

rheumatology.org/Portals/0/...

Rec 1 also recommends against using NSAIDs - and if naproxen isn't achieving anything I would stop it. I would take the Recommendations to your GP and ask for another week but at 25mg - he may be kind and indulge you.

We used to suggest putting an electric blanket on BEFORE getting out of bed - warm muscles work a bit better! Then get into a warm shower and do gentle stretches. That does get the blood flow going a bit and really does help. Once you can get moving the stiffness gradually recedes - in the 5 years I had untreated PMR I went to an aquafit class every day Mon-Fri - in a warm pool. If it was too cool, I went home after some time in the sauna or steam room! Having done that class - at MY level, not chasing to keep up if I couldn't and listening to my body - I was able to do an adapted Pilates or Iyengha yoga class and that helped the stiffness too. The muscle pain also faded a bit but pain was a constant - and there is no painkiller for PMR other than using enough pred to keep the inflammation down.

I used Bowen therapy to manage what I called the add-ons - myofascial pain syndrome can cause a lot of back, shoulder and leg pain. It worked well for me but doesn't for everyone. I realise this may not be an option for you - it wasn't cheap although my off-peak gym membership wasn't extortionate but that was more than 10 years ago. Cheaper options included sitting on a stool against a heating radiator or using a hot water bottle!

[Dave_Dee]

Thank you very much for the advice and support, I think we will just wait to get the feedback from the specialisr, but I think I agree that an extra week on the steroids might have been worth a punt.

While the rest of the world is reeling from C O V I D. I think she is feeling she shouldn't be making a fuss, although you will all know how life changing this is and the mental affect the symptoms have is debilitating in itsellf. Will definitely feedback with outco.e of appointment, especially if positive !I

Bowen therapy is definitely worth looking into, thanks

[Thelmarina]

It took me ten days and in the end I increased dosage to 25mgs for 5 days before it worked, quite quickly returning to 15mgs. I think it depends on the level of absorption and perhaps how long you’ve had it. I would certainly give it longer than a week and increase the dosage if 15mgs wasn’t enough.

[PMRpro Ambassador in reply to Thelmarina]

Not sure time you have had it makes much difference - after 5 years of symptoms I responded in under 6 hours to 15mg. Trouble is, now I can't get significantly below that for very long!

[Thelmarina in reply to PMRpro]

So frustrating! I feel for you xxx

[GlynisE]

I noticed a difference in hours.

[Meggsy]

15mg didn’t work enough for me. GP put the dose up to 25mg which did the trick but it still took a few days. I stayed there for 4 weeks before reducing. Presently on 3.5 mg.

[Dave_Dee]

Sounds promising, I hope we get the go ahead to re try with a higher dose

[HeronNS]

I'd see if she can be given the pred for a fortnight, but certainly no more than maximum 25 mg, because above that too many other conditions will be masked. It's the good response to a relatively low dose which aids in the PMR diagnosis. If that second trial proves unsuccessful she should be assessed for "differential diagnosis", if she hasn't been already. as there is no definitive test to prove PMR but other conditions can present with PMR-like symptoms and can be successfully treated with the correct medication.

Hope it works and she feels better!