I’m not wanting to really write this in case it triggers it again but I’m currently taking 3.5mg of Pred and have been taking it now for 18 months.
Although I’ve tapered to 2mg before I have always had stiffness and that dull pain in the shoulders and hips regardless of the dose.
But, for the last two days my body feels completely normal, other than a bit of stiffness in my legs (I walk 5km daily) I feel no dull aches anywhere and am far more flexible that I usually am (also preserve with yoga and Pilates).
A friend of mine told me it will go away at some point - her mother had suffered for years and it did with her but can it really go overnight as it seems to have done?
My plan is to continue the taper as I’m worried I’ve been lulled into a false sense of security but am wondering is anyone else suddenly has found their symptoms gone.
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Christine2307
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Ooh, I wouldn’t be too hasty there. So, I’ve been safely at 2mg for about a month now. Getting from 2.5mg to 2mg was not easy. I have GCA and not PMR though I do get fibromyalgia and I had so many aches and pains. Then one day I knew it was ok to go to 2mg and stay there, I just felt like my body had stopped throwing its toys out of the pram. Sure enough none of the horribleness of the previous week and it has taken 14 weeks to drop by 0.5mg. I tried a single 1.5mg on Monday just to see what happened. My body said, “hell no!” within 12 hours.
Not PMR as I’ve not had that at any point. However, whilst I’m sure adrenal function has a lot to do with it, I wonder if there is some effect from my body that may still have some autoimmune tendencies.
It can arrive overnight they say (I'm not convinced, I think it just gets to the breaking point suddenly!) so why shouldn't it go overnight too? But I think what probably happens is that the underlying disease activity cycles, rising and falling but always on a slight downward trend if we are lucky. At some point we get days where the a/i part is inactive and we feel better on those days. But it doesn't necessarily go away altogether immediately - and it is a story I have heard from quite a few over the years - they start to have really good periods and then short periods of less good time. If they resist the temptation to take a sudden plunge to zero pred they do often get to very low doses, 1mg even.
Some manage to get off pred only to have a relapse some months later. HeronNS has a salutory story to tell and so do a few others, Patience is still required I fear.
I found that a really interesting post, and especially your reply which sums up my experience absolutely. I felt completely different and good after my inadvertent drop from 3 to 2.5mg; however, I didn't get carried away, and alternated for a month between 3 and 2.5; now I have settled at 2.5mg.
Most of the time I feel great, but I am convinced that PMR fluctuates ( certainly it does for me), as I still get mini reminders of pmr's presence.
I still have to take care not to do too much - seems some of us never learn! For me now, it is still very much slowly, slowly, and I'm not thinking of going to 2 mg for many weeks yet.
As others have said - possible, but unlikely to be overnight, I agree with PMRpro it probably gets less active slowly - and you may not notice initially.
Continue your slow taper, and hopefully at the end of Pred, your PMR will have gone.
I’ve always said I “knew” when my GCA has gone into remission, but I continued for another 6 months reducing to find it had, but it was well over 5years!
I would have been more sceptical if it were only 18months. But you may be one of the lucky ones!
I would say No , not being political about it . It's just that sometimes it might feel like that.
There are many factors going on.
PMR , like Life , is a Rollercoaster .
The activity can be remitting , and then rebound , either because of activity and stress triggers or the self limiting nature of the illness itself.
Sometimes you can go through a good spell with very little or no pain for weeks , you think " yeah! it's gone " , then you can wake up without changing anything in your routine and still following the right routine and it shouts , " Hey Honey! I'm Back!" .
( It also sounds like Jack Nicholson in " The Shining" when it does this).
If you are lucky and it has actually moved on for good ( or at least hit old age and is in a heavy sleep) , you still need to be careful and follow a slow taper from your steroids , but can take the opportunity to enjoy the good spell and give your body time to repair and strengthen while the pain is gone.
Tapering too quickly because the pain has gone and you feel fine unfortunately still causes Steroid Withdrawal Symptoms , which , in themselves , can cause pain and symptoms similar to those of PMR , and if the PMR is on its last legs but still alive in there, like a wounded tiger it can rebound with a sting in its tail.
Then it's upping the drugs again and all your brilliant work is lost.
Take positives from the way you feel as it sounds like you deserve a pat on the back.
You are getting stronger , your hard work and good sense are beginning to pay off.
You have found a system that is working for you that is worth sticking too.
Your Patience will give you chance to rebuild your strength and reboot your immune system because you are feeling no pain .
You may be getting near to the finish line as long as you keep following the same pace.
Just continue to remember that the race is always won by the tortoise not the hare.
Sometimes you can go through a good spell with very little or no pain for weeks , you think " yeah! it's gone " , then you can wake up without changing anything in your routine and still following the right routine and it shouts , " Hey Honey! I'm Back!" .
( It also sounds like Jack Nicholson in " The Shining" when it does this).
Thanks for this. Perfect description but humorous at the same time. We all need a bit of humour to help us get through these sometimes difficult times........😂
Yes , the sudden thought of PMR personified as Jack Nicholson complete with psychotic grin , peering through a doorway axe in hand , made me titter when it popped in my head , just had to share it !
Yes thanks I do. I found the Scottish charity first actually and joined up with them, then through information they sent me I found this forum which has been an absolute godsend. I’ve found out more about PMR here than anywhere else and have even used information gleaned from here to educate my GP a bit. He hadn’t heard of PMRGCAuk before but has now!
I’m lucky in that he is very open to me coming along with ideas and suggestions about my own treatment including for example a print out of Dorset Lady's DSNS excel spreadsheet which he hadn’t seen before but said he thought was a very sensible way forward. From reading the posts here a lot of people aren’t so lucky. He’s content that I don’t reduce too quickly and that I take my time. If I’ve learnt one thing here it's that PMR can’t be hurried.
I’m in the Highlands and there is/was a support group here but I’m not sure that they are currently meeting. They certainly did last year but I wasn’t able to attend any of the meetings myself as they were in the morning and I still work full time (which has its own challenges).
Thanks for all the support you and others give on this forum. So far I've managed to find the answers to most of my questions by searching the posts but even knowing there are people around to ask if need be is a big comfort.
Glad you are feeling so well. Carry on with the taper. i too had this moment when I thought it was "gone" and my doctor even didn't renew my prescription, told me to use up my tablets stop and see what happened. What happened was a flare, and two years on I am still not back to the dose I was at when we made that mistake. So, be careful. And we all hope your continuing taper does indeed lead successfully to zero!
Nice to hear you're going through a 'good' spell with your PMR symptoms, fingers crossed it will last. The difference physical and mental / emotional energy-wise is Night and Day as I well know, having had a few miraculous, weeks-long almost total absence of all symptoms (i.e. Pain, stiffness, Deathly Fatigue) during my 4 year PMR journey - and without any obvious cause. It CAN happen - Hoorah!
That said: I tend to agree with others here (and from personal experience) that PMR symptoms can seem to wax and wane according to the level, progression +/- and heterogeneity of the underlying Auto Immune activity - either of its own often mysterious accord or in context (e.g. any / all of Pred dosage and tapering efficacy, genetic pre-disposition, dare I mention (!) age, gender and ethnicity, physical over exertion, viruses, infections, injuries, surgery, co-morbidities, climate, unduly high stress levels, lifestyle choices, etc). With so many Variables in the process, no wonder the entire PMR / Pred 'Customer Experience' can often be confusing and frustrating for many of us!
To my amateur knowledge: any or all of the above in combination can place additional 'load' on an already (probably?) compromised AI and HPA axis / Adrenal function, and maybe due to the ageing process too. So, even when feeling 'out of the woods' symptoms-wise, the general wisdom is not to push yourself too hard physically / emotionally or, as you say, be lulled into a false sense of security about the future prospects (sorry..), since PMR and the likes are long term chronic illnesses and (unlike a brief bout of the Flu) and do take their toll on our general levels of health and fitness. Been there and got the T shirt (sorry again...).
But, as PMRpro suggests, if the general pattern of PMR symptoms is getting better over time (i.e. less intense and / or frequent), that must be a good sign overall. As always, Patience and Pacing are key in adjusting to a new 'Normal' either way.
My GP / Rheumy's opinion is that, with most types of AI disease (e.g. those which trigger PMR symptoms), there is always likely to be a susceptibility in Patients to relapse even when symptoms have died down / seemingly gone into remission. And, as others here say, the periodicity can range from a few weeks to a few years. At best, and for some, permanent remission is a highly valued prize. If it helps: my GP advises that, even when PMR symptoms have 'disappeared' for some time, be prepared to resume a low-ish dose of Preds (or equivalent) 'On Demand' to manage any gradually returning symptoms if or when they appear, and in conjunction with a trusted GP's advice and / or experiences from the experts here. Makes sense to me...
[Please Note! The above does not necessarily apply to GCA patients due to the potentially more serious consequences of not monitoring and managing and GCA symptoms regularly].
So, (and on the positive side), my conclusion? Easy does it, keep an open mind, and enjoy feeling so good for now at least. Things can get better..
Good luck and please keep Us Lot posted on your progress. On, and Forwards..
MB
[Dx PMR early 2015 at 30 mgpd Pred, roller coaster Pred / symptoms journey (despite DSNS), now at 2-3 mgpd +/- after a few flirtations with Pred Club Zero. Current PMR pain / stiffness almost zero for several weeks, once again. DF (Deathly Fatigue) still a niggling issue but varies in context. Rheumy appt this week to push for an ACTH / Short Synacthen test to check-out Adrenal capability +/- after long term Steroid management for PMR].
Ive been wondering the same as I’ve been feeling over the past couple of weeks that my PMR has gone. I seemed to find it quite easy to get to 2 mg , only a bit tired and am currently trying 1.5 mg. I have virtually no stiffness at all apart from my left outside hip which I know is arthritic. However I’m being really cautious with the taper just in case, though it’s difficult not getting a bit excited at the thought of being pred free. The advice on this site has helped me enormously. I was diagnosed in January 2017 but have had PMR since October 2016.
I've not had any PMR symptoms since starting Prednisolone 5 years ago. I had it undiagnosed for 6-9 months gefore that. 15mg of Prednisolone and a miracle! No pain, no stiffness since! I have had pain here and there during my journey but mainly due to Piriformis Syndrome. If my adrenals had got going again quicker I believe I would have been off steroids sooner. Basically, its hard to tell if PMR has gone into remission ir not. I have days when I feel 'something has lifted' and I feel 'normal'. Sadly it doesnt last as long as I'd like. I am currently trying to get fully to 2.5mg but I've been hitting a wall of fatigue up till now. For nearly a year now, ive had the feeling/belief that the PMR has gone, and have been trying to slowly to build up my strength. Sorry, if I've been rambling....
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