PMR from a younger than average age and undiagnosed for years
Posted , 10 users are following.
Hi - as per the title I have had this undiagnosed for 5 or 6 years. Finally it hit me like a truck and I got diagnosis and medication just over a year ago. My experience is not unlike that of Eileen H who is an expert on this forum.
Anyway my exxperiences of coping have been a bit differnt to some - having had my family fairly late in life i still had a child at primary school as well as a job when i first got the condition!
That's just by way of introduction - my question at the moment is this. Having had the condition for years I now have the symptons under control but I know it is still very active - I am having to be super careful with tapering and have had a few set backs.
Is there a known link between age at onset and the amount of time it hangs around? Or perhaps a link between having the conditon untreated for a long time and the time it takes to go into remission or to get off steroids. I'd be interested both in any research anyone knows of and of course personal experiences.
Thanks for reading.
0 likes, 36 replies
jean39702 greentea26
Posted
Interesting questions greentea, and something I've been wondering myself. I was undiagnosed for at least 5 years, possibly 7. Diagnosed two days before my 65th birthday, so onset could have been at age 53-55.
I've been on prednisone for 3 years this month. It took 40 mg to get things under control in March 2014. I've had 2 flares over the years. The first was three months after diagnosis and caused by reducing far too quickly on the recommendation of physicians. The second flare was in April 2016 and was the result of my own stupidity, not lestening to my body and pushing too hard. I was down to 10.5 mg at that time and had to go back to 15 mg to get things stabilized.
I've learned at about 17 mg that my body could only tolerate a very gradual reduction. I've made it down to 11 mg dropping .5 mg at a time every six to eight weeks or longer using the Dead Slow Nearly Stop reduction scheme.
greentea26 jean39702
Posted
Thanks for sharing this. When you do half mg at a time do you cut the tablets ( I haven't had much luck trying this with the 1mg) or do you take for example 12 one day and 11 the next?
jean39702 greentea26
Posted
Are you familiar with the Dead Slow Nearly Stop (DSNS) reduction plan that Eileen speaks of with great regularity?
greentea26 jean39702
Posted
Hopefully I will soon get below 10 then I will undoubtedly try DSNS
EileenH greentea26
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jean39702 EileenH
Posted
greentea26 EileenH
Posted
I am having bit of a flare - i was going to persist with the reduction
But I feel so bad today I am not sure if I should persist with the taper at the moment - I've started another thread about it to avoid confusion
EileenH jean39702
Posted
It's ongoing - just recruitment was slow as one of the group had left for a better job.
EileenH greentea26
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amkoffee jean39702
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amkoffee greentea26
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EileenH amkoffee
Posted
If you have pills where the surface is slightly rounded you can place them on a hard surface and press on opposite sides with your thumbs/fingers and hey presto - they break in half. Not sure how thickness affects that though...
amkoffee greentea26
Posted
I have a question that kind of relates to this subject. If you don't get treated for PMR can you go into remission without the prednisone? I'm thinking of these people who are being diagnosed with fibromyalgia when they really have PMR. So they go for years with this awful pain not knowing that they could be being treated with prednisone, could they then find themselves suddenly without pain because they are in remission or is that even possible without treatment?
greentea26 amkoffee
Posted
However I supoose people in such a situation will never know they had it so there is not really any way of knowing?
pam7653 amkoffee
Posted
I was told untreated PMR can lead to GCA.
If I hadn't treated my PMR I can't imagine where I would be after 3 years. Eileen can you respond to this?
EileenH pam7653
Posted
I'm not entirely convinced to be honest. Only about 1 in 6 people with PMR go on to develop GCA and it can be at any time. Some of them will be GCA patients who present with PMR symptoms - but being on a low dose of pred won't prevent GCA showing the worse symptoms if it gets bad enough. On the other hand - you can have (probable) GCA without having visual symptoms if it isn't involving the cranial arteries and then 15mg may be enough to relieve the symptoms you do have.
I had 5 years without pred. Some of my symptoms were on the GCA list not the PMR one - but I responded like magic to 15mg pred. Who knows!
EileenH amkoffee
Posted
Forgot to answer this amkoffee - sorry.
This paper:
Long-term follow-up of polymyalgia rheumatica patients treated with methotrexate and steroids.Cimmino MA, Salvarani C, et al
says "The fact that one third of patients with PMR has to assume [sic] steroids for over six years is in contrast with the common belief that PMR is a benign, self-limiting condition. The fate of PMR patients not treated with steroids is probably not very different, with 32% still complaining of symptoms after a mean period of 7.1 years."
Which does suggest that quite a few don't go into remission easily either way. The relatives I remember as having what was almost certainly PMR had it for a long time. There are some people who do seem to go into remission after a while - but since the pred doesn't affect the real disease you would think the figures would be similar for both those patients taking pred who attempt to reduce the dose steadily to zero (with pauses as necessary) and for those who never take pred. Mine had never even faded over a period of 5 years and at the end of that 5 year period I had a major flare which made the rest of the time look like a practice session!
But the primary point I want to make there is that pred is not a treatment for PMR - it is a management system, nothing more. It allows you to keep the symptoms under the degree of control that allows a decent quality of life in the meantime. So the only real difference is pain and stiffness or less pain and stiffness - even no pain and stiffness!