Is my PMR under control

[Boxinglife88]

This may be a silly question, but I would like to get some feedback of what it looks like to have your PMR under control.

[piglette]

The mantra for PMR is rest, rest, rest. All the pred can do is suppress the pain. You should feel at least 70% improved. Because pred can be so effective, people tend to try and carry on as they did before PMR and that is often not a good idea.

[Rose8950 in reply to piglette]

Thank you, 70% and rest rest rest. I’m doing things right !

[piglette in reply to Rose8950]

👍👍😁😁😁

[SnazzyD]

Depends what you mean. Getting PMR under control or the inflammation? The only thing we are influencing is the inflammation with Pred. The autoimmune activity is independent can still be there and you won’t know until you withdraw the Pred (not advised! ) or get to too low a dose. Some people’s blood inflammation markers are a good guide to the inflammation being under control but it isn’t 100% reliable as there can be a lag between the markers rising and the inflammation gaining ground. You’re doing ok with inflammation if you have no symptoms is the broad assumption, but it doesn’t mean one can go back to normal.

[Boxinglife88 in reply to SnazzyD]

DL had mentioned earlier, that if I can't seem to ever get below 4mg, than maybe my PMR isn't under control. I do have a fair amount of pain and stiffness, but have also just started slowing down and doing less intense exercise (yoga, joint mobility in the pool, shorter, slower walks)

[SnazzyD in reply to Boxinglife88]

It’s a term really. We aren’t affecting the course of PMR but trying to find the lowest dose that deals with the inflammation of your current level of autoimmune activity. The trouble you have is that you don’t know whether it is the introduction of new activity which is causing damage type pain or whether your dose level is too low for now and the autoimmune generated inflammation is increasing. You could have both. If you take your foot off the activity pedal for a week or two, it might become more obvious which.

[Boxinglife88 in reply to SnazzyD]

Thank you. My thoughts exactly

[Excelsior80]

I would say my pmr is under control. When I started pred I got the miraculous improvement in pain and stiffness, all gone in hours. And reducing is going ok, down to 5 1/2 from 15 last June. I can walk and swim without problems, perhaps a bit less than before. On the other hand I went to a very mild yoga class this morning for people with medical issues and I am absolutely exhausted. In bed. I do have to rest after any extra effort. But I am otherwise fine. People vary a lot and I have been lucky so far, no other complicating issues. The only side effect of pred Im aware of so far is increased blood sugar, so trying low carbs and hoping to improve it

[RunnerJoe in reply to Excelsior80]

I'm very similar. Once I started high dose prednisone for GCA and PMR all of my problems went away almost instantly, and I haven't had any problems since, other than some side effects from the prednisone and Actemra (some muscle issues and high cholesterol).

[PMRpro Ambassador]

Minimal PMR symptoms because the inflammation is being well-managed. The optimum result is likely to be seen at the starting dose prividing it is high enough and should be taken as a guide ongoing, you shouldn't feel worse at the end of the taper step as you did at the start of it.

But that does depend on you not overdoing it with activities that aggravate the inflamed areas. If you are doing that you can't tell if the pred is doing an adequate job because you confuse the issue with DOMS as we explained elsewhere.

The pred CURES nothing, all it can do is control the level of inflammation in the tissues by mopping it up and providing a management strategy. PMR isn't the disease, it is the name given to a set of symptoms due to inflammation caused by an underlying condition - in our case it is most likely an autoimmune disorder where the immune system goes haywire and attacks body tissues in error because it is suddenly unable to recognise body as self. a sort of blue on blue attack. Pred probably does suppress that to some extent but not entirely - and it continues in the background attacking the tissues causing a sort of flu-like effect that can make some patients feel unwell and fatigued. If the inflammation isn't entirely cleared out on a daily basis, it can cause problems and longterm can build up like a dripping tap fills a bucket so that over time you may end up back where you were at the beginning and needing more pred again.

[Boxinglife88 in reply to PMRpro]

Thank you for this information 😊 I do believe my inflammation isn't under control because I have pain and stiffness all day, even after pred. I have an appointment with my gp next week and will hopefully come up with a plan. I will keep you posted.

[PMRpro Ambassador in reply to Boxinglife88]

But don't discount what we have said before about the amount of exercise you were doing - and admitted to "pushing through" which is never a good move with PMR!! Until that effect fades it will be difficult to decide which it is. And of course it could be a bit of both.

[DorsetLady PMRGCAuk volunteer]

Simple answer really, little or no symptoms… but unfortunately life ain’t as simple as that always😳.

As we’ve said before you sound as if you may have others things going on - DOMS for example from exercise…. But you shouldn’t be in a much pain as you have implied you are.

The less intensive exercise may give an improvement.. but if it’s your PMR - then more Pred is required, even if only temporarily to get it back under control. One way to do that that is use the flare protocol and see if it makes any difference. And then settle in 5mg for a month of so, and see what happens..

healthunlocked.com/pmrgcauk...

[Boxinglife88 in reply to DorsetLady]

Thank you so much! This is exactly the advice I was looking for.

[Thelmarina in reply to DorsetLady]

I’d add that Pred can mask other conditions such as arthritis and rheumatoid arthritis and the stiffness of old age!

[DorsetLady PMRGCAuk volunteer in reply to Thelmarina]

It certainly does..😊

[PRL1957]

In addition to not having pain, I found my temperature to be a useful indicator. When the pandemic started, my wife and I started measuring our temperatures as a way of checking for infection. (We were also caring for her elderly father at the time.) The subsequent arrival of my PMR was marked by a mild rise in temperature, by about 0.6°C (measured under the tongue, using a digital thermometer 3 or 4 times a day and calculating a running average).

My average temperature came back to normal when I started on prednisolone, but trended upwards as I reduced. A relatively large or continuing rise (ca. 0.5°C) suggested my PMR was increasing; at one time, a relatively rapid and large rise coincided with the suspected onset of GCA. (Another, larger and very sharp spike did occur when I caught covid.)

Measuring required a little care: only measuring under 'resting' conditions and avoiding activities that would normally cause a rise in temperature, keeping records and calculating a running average.

I found an upward temperature trend actually preceded the return of pain. So my successful taper off prednisolone was largely informed by keeping my temperature close to my normal value (36.0°C).

[Hopelessatbest in reply to PRL1957]

Interesting and worth investigating. Thanks for the info.