Curious,2....: An aquantance of mine, an 84 year... - PMRGCAuk

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Curious,2....

Manchild profile image
30 Replies

An aquantance of mine, an 84 year old man, was diagnosed with PMR about a year ago. His Rheumy put him on a one year reduction plan to zero. I ran into him the other day at a restaurant, and he feels fine, with little or no pain, and had come off pred totally. Had no flares during tapering, and he is very active for his age. PMR was diagnosed shortly after his wife’s death.

Curiouser and curiouser.

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Manchild profile image
Manchild
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30 Replies
PMRpro profile image
PMRproAmbassador

Not really - I am sure that there are several different versions of PMR. Autoimmune disorders aren't alike in everyone anyway. PMR isn't the disease, it is the name given to a set of symptoms due to an underlying disorder and it turns out different in different people.

I envisage it as being like a shop: there is a counter and a salesperson and behind that are shelves with all the different possible symptoms of an autoimmune disorder. Some come in packages. It is your turn and they chuck you a load of different symptoms, they even say I'm done and you turn to leave but they suddenly through you another couple. Then you go to the doctor and he lookes at the selection you have and pulls out a sheet of paper that lists them - together with a label that covers most of them. Maybe. But several of you have a selection that is basically similar so you get the same label - but there are odds and sods that don't get a mention. And the salesperson just shrugs when you ask what it is all about...

His may have been a reactive form - to the stress of his wife's death, Men do typically experience PMR very differently and often, though not always by any means, shorter and easier. Or it may poke its head above the parapet again ...

Louisepenygraig profile image
Louisepenygraig in reply to PMRpro

I like that analogy. I suspect that's true of other conditions too such as depression and probably fibromyalgia. I know I had about 9 different antidepressants before the consultant found one that worked - that was in the days when tricyclics were still first choice and SSRIs last. Considering the advances in medicine in my lifetime I wonder where we'll be in 50 years +

PMRpro profile image
PMRproAmbassador in reply to Louisepenygraig

Roasting probably ... I'll be long gone anyway!!!!

Louisepenygraig profile image
Louisepenygraig in reply to PMRpro

So will i I hope!

jinasc profile image
jinasc in reply to PMRpro

Me too.

Constance13 profile image
Constance13 in reply to jinasc

See reply to PMRpro!! Same applies.💐😂

Constance13 profile image
Constance13 in reply to PMRpro

You may be in the "other place" seeing as you have helped so many people over the last 10 years or so.💐😂😂

Yellowbluebell profile image
Yellowbluebell in reply to Louisepenygraig

Me too. I tried new ones, old ones, every possible anti depressant before an oldie worked. Strangely enough it turned out to be useful for my shoulder issues as well. Good old amitriptyline. Tried coming off it numerous times and back to depression so gp decided it's cheap so stay on it!!

in reply to Yellowbluebell

I miss citalapram and amitryptiline due to duloxetine being prescribed for neuropathy, but my research has said that 60mg duloxetine and 10mg Amitriptyline can work together and not a serotonin crisis. My back has got a bit better and at 10mg Amitriptyline I have several months worth as I just got 40mg a day worth of prescription when duloxetine kicked in.

Yellowbluebell profile image
Yellowbluebell in reply to

Does the duloxetine work for your pain for depressionc

Blearyeyed profile image
Blearyeyed in reply to Yellowbluebell

It can do

Louisepenygraig profile image
Louisepenygraig in reply to Yellowbluebell

It's the opposite for me, amitriptyline was the first choice and it did nothing for me, apart from side effects. I was wary of having it for fibromyalgia for that reason but it worked initially and the low dose didn't have bothersome side effects. In fact the low dose of amitriptyline added to fluoxetine got rid of a residual mild depression I tend to have. That wore off after a while though too. Maybe the time will come where a blood test can be used to determine the best antidepressant for each patient

Blearyeyed profile image
Blearyeyed in reply to Louisepenygraig

I think the SSRIs working over tricyclics is another proof of the origins of a person's mental illness and Fibromyalgia ( at least it seems to be relevant in the treatment success for me and a number of my friends) .

It could be another link in the chain that shows the progress towards an autoimmune or autoinflammatory issue as well as the different drugs are more successful on different areas and receptors in the nervous system and the brain .

SSRIs are more effective in treatment of symptom issues involving the autonomous nervous system and adrenal function through my research , and autonomous nervous system dysfunction seems to have more links with autoimmune diseases.

It's just a thought that has been growing from my research over the last few years though , so I could well be wrong.

Louisepenygraig profile image
Louisepenygraig in reply to Blearyeyed

SSRIs are good for SAD too. So many times when I'm researching stuff like SAD, migraines, and fibromyalgia serotonin seems to get a mention.

in reply to Louisepenygraig

I came across this today. I take Metformin for diabetes so can't really stop it to do a test. 😂😂😂

diabetes.co.uk/news/2019/Ma...

Louisepenygraig profile image
Louisepenygraig in reply to

Interesting

Christophene47 profile image
Christophene47 in reply to PMRpro

Very well done metaphor; or this gentleman simply may have been misdiagnosed in the first place; given his age and going through the grieving process, it may have been the depression of grieving which also comes with musculoskeletal pain; a year is "typical" (but again different for everyone) for the grieving process. We don't know whether or not his blood markers were elevated, but we also know they don't mean as much as some doctors would have us think. Or it may come back and flare again later as you suggest.

Or it could be short term mild PMR...it is unusual for a doctor to determine the length of a taper at exactly a year in advance at which time Mr. X recovered. Interesting..

But all is mere speculation as we do not know this individual or his doctor ,and all is heresay , and would never hold up in a court of law. In any event, I am glad for him.

PMRpro profile image
PMRproAmbassador in reply to Christophene47

I think it is DL (might be wrong) who had raised markers due to the stress of her husband's illness.

If you consider your friends age, his circumstances & the general consensus there is more than one form of the Autoimmune Disease we describe as PMR we have to wish him well that he doesn’t have the difficult journey so many of us have on this forum.

Manchild profile image
Manchild in reply to

I do appreciate and understand all that you ladies have said regarding my post. It was just meant as a slice of the PMR life.

in reply to Manchild

My friends late husband had gca and never got below 10mg in 12years. His mum had it too and was at 1mg for 15plus years. It is weird and wonderful and obviously has different patterns. 🌻

++++++

6mg, entering year 4.

Christophene47 profile image
Christophene47 in reply to Manchild

Absolutely understood.

PMRpro profile image
PMRproAmbassador in reply to Manchild

Oh yes - but there are people who would read it and start to worry because they can't get off pred like that so we present the other side too.

SheffieldJane profile image
SheffieldJane

I am glad for him.

Blearyeyed profile image
Blearyeyed

Everybody's reaction and form of PMR activity is different , that's why we always need to tell ourselves off when we try to judge or compare our recovery progress by the progress we see in others.

Even if our lifestyles and ages are the same , just as we don't look the same on the outside , we are often not the same on the inside either.

Thelmarina profile image
Thelmarina

I had a friend with a similar experience and two years later PMR came back with a vengeance. We are all different but I instinctively mistrust quick fixes with this illness

Charlie1boy profile image
Charlie1boy

Yes; I know at least two people who said they had had PMR, and were rid of it in about a year. I remember thinking it couldn't have been the same version of PMR that I am living with!

Paddy

bunnymom profile image
bunnymom

I had a friend whose husband was diagnosed with PMR. The doctor told him we have to nip this in the bud quickly. Got high dose steroids (wife's words) for a few weeks and bam he recovered. Who knows? It's a mystery to me.

PMRpro profile image
PMRproAmbassador in reply to bunnymom

PMR isn't the disease - it is the name of a set of signs and symptoms caused by an underlying disease process. And there are several!

There was someone on one of the forums who went to a support group where a bloke claimed he'd only had PMR for well under a year, got pred and did everything as normal immediately blah blah blah. Just so happened the wife was there one time - he'd been on pred for 3 years and moaned about the pain the whole time!

bunnymom profile image
bunnymom in reply to PMRpro

Haha!

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