No Longer Member of Club "0" advice on Pred Dose

Once all your symptoms are stable - just do it! 

There are rheumies who feel that when you relapse like this you may well just need a lowish dose and then are able to keep it under control. It is quite possible that others (like me for example) have such periods of low activity of the underlying cause of the PMR but were not at low enough a dose to experiment with zero pred and when they do get fairly low by coincidence have a flare that sends them back up to a higher dose.

Bergey, sorry to hear that your journey continues. I do not have all the experience that you and many have had, but I am a believer in the DSNS method. I am PMR pain free and only taper when I am PMR pain free. I am very active and work on being active. Try to stay positive and keep a smile on my face. 🙂

Good luck on the rest of your journey!

Like you, I have had PMR twice, possibly three times but I was luckier than you in that I was in remission for five years the first time and, so far, just over four years since the second/third bout.

First time I was started on 30 mgs. pred. and had instantaneous complete relief; second time started on 15 and eventually got to zero but with many ups and downs so I find your regime very interesting indeed. If going back to five has controlled your symptoms then that has to be good, surely Medics always want us on the lowest dose possible and often on too low a dose!

Have you had any recent blood tests? I know they don't give a 100% diagnosis but surely have to be on the agenda.  Wouldn't it at least be worth having ESR and CRP done?  End of March is a long way away. If it is something else than the sooner you know, the better, surely.

I'm not qualified to advise but I think if I were in your position I'd do what you are doing and adjust the Pred. to whatever is the lowest dose that keeps you comfortable. Let us know how you get on. Best wishes.

Bergey,

Sorry to hear about the relapse.  I'm currently experiencing my first serious flare while going from 1.5 to 1.0 mg -- down from 60 (at first), and then the start of the DSNS method at 15 a few years ago.

I've tried upping it to 2.5 mg to combat the flare, but will go to 5 mg today and tomorrow to try to really get on top of it.

More to your question, I also will do to doc and ask for more blood tests.  I haven't had them for at least a year, and do feel it's my "duty" to myself and my family to make sure there's nothing else going on.  Not that I think there is -- in fact I'm almost sure it's just the PMR.  But why not?

All the best to you,

Thank you all for your concern and suggestions.  I do have an appointment with my Internist, who I see when I am in the southern US for an extended period, next week and will discuss it with him.  I am going to stay on 5mg for one month then go to 4.5 using the DSNS method.  I am and always have been very active, playing Pickleball five days a week and walking.

I am most curious about how PMR gets triggered into reactivation and am convinced, in my case, that a high level of stress could be a factor, as well as illness.  In the past month, I experienced a bad cold with flu like symptoms (have had flu and pneumococla vaccines) followed by bronchitis that was suspected to be viral, following an airplane flight.  Back all that up with a brief high level of stress and here comes the pain,  stiffness, fatigue and need to sleep 11 hours a day.

It is a relief that only 5mg is controlling it, however, for now!