Do we have any studies on who Long it takes for p m r to burn its self out??

[Mjhollywood1]

Going in my 3 year !!!!

[DorsetLady PMRGCAuk volunteer]

Hi,

This is the latest studyI believe. Hang on in there!

rheumnow.com/video/dr-kathr...

[SheffieldJane in reply to DorsetLady]

Although I have read the Eric Matthieson (sp) study and have absorbed this as my truth, it was enormously helpful to hear a doctor state this. I have been discombobulated since my own Rheumatologist told me the old 2 year story last week. So thank you very much for posting this. It gave me a real boost from the doldrums. I know, 3 years on ( probably more) with PMR that the disease is not done with me yet. Struggling at 5.5 mgs.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

I really find it very frustrating that doctors, and especially specialists still hang on to the 2 year theory.

As I said in another thread this morning, either they don't know the length of treatment (and they should have some idea, or at least find out when confronted with it) or don't want to tell patients how long it could be. Either way it's wrong.

My ophthalmologist told me at the outset (very politely) "you'll be on steroids for at LEAST 2 years, PROBABLY longer, and MAYBE forever" . No faffing about, so I knew where I was, no pressure to be off in 2 years, no thinking I'd failed after that time and I was still shoveling the meds down!

Result - relatively (!!) stress free reduction.

[SheffieldJane in reply to DorsetLady]

Taking Prednisalone is not self indulgent, which can be the underlying attitude. It’s not that pleasant, it just enables you to have a life. Thanks again for the wisdom.

[HeronNS in reply to SheffieldJane]

Yep. I had such an uneventful journey down to 1.5, where I was nearly two years ago, and then all going pear shaped when my doctor wanted me to try to taper to zero. Never been able to get below 2.5 since, although last week took first dose of 2 mg in another cautious attempt to start DSNS again. At least I have no one, not even my doctor, urging me to get off pred now. When this was attempted a couple of years ago I think it was simply a genuine belief (by doc) and hope (by me) that PMR was in remission as my tapering had been so smooth to that point. I could say I'm struggling at 2.5, but maybe it would be more positive to say I'm pretty comfortable at 2.5. The difference between current minor aches and pains (arthritis?) and the increasing disability of PMR untreated is like day and night.

[Bronni in reply to HeronNS]

I stayed on 2 mg forever, before dropping to 1.5. I don’t really know why I bother reducing, because when I get to 1mg or 1/2mg I’ll have a flare. I mean at this low dose should we worry about any side effects? I’ve been at zero twice and had to go back to 6 to get it under control, so why aim for zero at all?? I dunno. I’m confused 😂

[HeronNS in reply to Bronni]

Exactly. But we have to try. I'm much more cautious these days than I was a couple of years ago. For example, I took 2 mg last Wednesday, and 2.5 every day in between. I'm going to stay at 2.5, not try tomorrow's scheduled taper, because I don't feel all that great and past experience tells me I shouldn't push it, even this early in the taper. I'll try again in a few weeks. If I try to push it I'll end up needing a higher dose again and that is counterproductive.

[Bronni in reply to HeronNS]

I was soooo cautious going down to 1.5 and did the same thing. Alternate days w 1.5 and 2mg. Felt a couple of ‘niggles’, but nothing significant so plodded on over about 10 days. I have to tell you, though after I was ok at 1.5 mg, I had awful fatigue for 2 weeks. Nap after breakfast, nap after lunch. . . . Then that went away too. Good luck, but you know I’m sure, not to forge ahead unless you’re feeling good, it really is the key. This is not for the faint of heart 🙏. I’m at 4 yrs 4 mos, btw.

[HeronNS in reply to Bronni]

I did get to 1.5 for a while a couple of years ago. Not able to get back since. Mind you, the last six months have been more stressful because we bought a condo, sold our house to our younger son (that turns out to be a real blessing) and have been dealing with incompetent workers who were renovating our condo which was really dated. Had a plumber come in today who sorted out some of the most egregious errors with the plumbing and I'm feeling a lot better now. At least I can use my bathtub now, and the washing machine. It's actually useful to have an excuse to veg out, namely PMR/pred and fatigue!

[Bronni in reply to HeronNS]

Sounds like you’ll get there after your moving has settled down. I actually started with pmr during a stressful new house purchase! - that coupled with awful viral illness ( courtesy of my granddaughter). And yes, there are times I use my illness to my advantage 🙄. Enjoy your new home 🏠

[HeronNS in reply to Bronni]

I started PMR when we were planning to build an addition to our home (that didn't happen in major part because I was ill although I didn't know it) plus I broke my leg and retired that same year. Over a year before diagnosed but the doctor who did has for the most part been very good, mostly because she leaves me to my own devices and a limitless supply of 1 mg tablets. . When we ventured on the purchase of the condo which needed such major renovation I was afraid I'd flare, but in fact I've been "okay".

[Bronni in reply to HeronNS]

Well that’s good to hear ( no flare). Sounds like we have a similar experience!

[PMRpro Ambassador in reply to Bronni]

If you are repeatedly flaring at any given dose it is your body (and PMR) telling you that you have reached your goal: the lowest dose that manages the inflammation as well as the starting dose did. If you have got to under 5mg by the time that happens - stop worrying about the pred. And if you got to 1mg, forget about stopping it. It is such a small dose it isn't worth worrying about at all and it isn't uncommon for patients to be on even 1mg on alternate days and the symptoms stay away but return if they try zero. Doctors will try to tell you it can't be doing anything - lots of patients and nurses know better,

[Bronni in reply to PMRpro]

I’ve been at 1/2mg twice in the last 4 yrs. The first time went to zero and flared, second time my OH had a scary health event and another flare. You’d think after all this time I’d have this thing down, but...... sticking at 1.5 now and not worrying. Thanks!

[Mjhollywood1 in reply to SheffieldJane]

Thx read everything !!!! Just hoping for. 3 years😉

[Pipalina in reply to SheffieldJane]

Hello - Do you have a link to the Eric Matthiessen study as I would be interested in reading it?

[SheffieldJane in reply to Pipalina]

See PMRPro’s links Pipalina, below, well it is at the moment.

[Pipalina in reply to SheffieldJane]

xxx

[PMRpro Ambassador]

And the papers to go with the study as opposed to the TV programme:

medpagetoday.org/rheumatolo...

practicalpainmanagement.com...

Sorry - the full book is a bit difficult to get at ...

[SheffieldJane in reply to PMRpro]

Thank you so much!

[Hidden]

I am now on year 5, at 4mg steroids.xx

[Marcy47]

In my 4th year of PMR, just tried to taper from 6.5mg to 6mg and pain in shoulders and neck returned. I am upping my dose to 7mg for a few days to see if that clears it up. I think we are in for the long haul!

[Purplecrow]

Hi, presently at 5.5 years post diagnosis. Hoping to exit in year 6.🙏🏽