DorsetLadyPMRGCAuk volunteer5 years ago

Hi,

How long did you have PMR previously?

You may be opposed to going back on to Pred, but if you’re sure it’s a reoccurrence of PMR I doubt if you really have a lot of choice. If you act quickly enough you may be able to get away with a low dose - say 5mg. That may be enough to control your symptoms, but not too much to give you any problems with side effects - I’m assuming that’s why you don’t want to go back on the medication.

You obviously recognise you are taking a risk by not going back on Pred, but it’s entirely your choice of course. But I know what I would do.

Whatever you decide, good luck and please keep us advised of how things go.

Kixx5 years ago

DorsetLady, thanks for your thoughtful response. It was about 2-3 years (misdiagnosis). I have my first appointment with a doctor in my new hometown in late-August and will try to tread lightly until then. Thank you so much for responding. Your wisdom is much appreciated.

Susan

DorsetLadyPMRGCAuk volunteer in reply to Kixx5 years ago

Hi again Susan

After a misdiagnosis I can appreciate you not wanting to take more Pred unnecessarily. If it wasn’t PMR then what was it?

Obviously some people do manage PMR without medication, but not many are on here. Koala9 is one - have a scroll through and find her post “my journey on alternative treatment” 6 days ago.

Our worry on here is that if untreated PMR may escalate to GCA - a much more serious beast!

As I said before please keep us in the loop.

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piglette in reply to DorsetLady5 years ago

I think you will find the few who do fight through without pred do not seem to get rid of the pain completely and also have to go through hoops in all sorts of complex eating regimes. A lot actually give in and say how thankful they are that they did.

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PMRproAmbassador5 years ago

I don't think you CAN "avoid a flare" - if the underlying autoimmune disorder is still active or has reactivated then you will develop symptoms.

I had PMR for 5 years before starting pred - not a misdiagnosis, a non-diagnosis - and nothing would persuade me to go back there willingly.

Just bear in mind that untreated PMR is more likely to progress to full-blown GCA - and then you have no option other than to take high doses of pred or risk loss of vision.

PMRproAmbassador5 years ago

Of all the things that can cause night sweats including PMR and GCA and pred, which apply to most people on this forum, why did you plump on fatty liver? Which on medical sites does not appear to lead to sweats...

Ladybird25 in reply to PMRpro5 years ago

Gosh, thank goodness for that! I have dreadful night sweats, and I was just starting to worry about my liver being my next problem. I can relax again.

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piglette in reply to Ladybird255 years ago

On higher doses of Pred I had dreadful sweats. They were horrible. I still get them slightly but nothing like the waterfall effect initially.

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HeronNS5 years ago

Do you think it's possible your adrenal glands haven't really kicked up to the proper level yet and you are experiencing some cortisol deficiency - which would be alleviated by a fairly small dose of pred which you could then taper off imperceptibly? My doctor told me at the very beginning that she has patients who keep a supply of 1 mg pred on hand just in case they need it from time to time. I haven't got there yet but I think the idea is that eventually the need for the little top up becomes less and less frequent and finally they taper off completely, but it can take a very long time.

piglette5 years ago

Hi koala, are you sure that is correct? I have never seen night sweats as possibly being caused by fatty liver, where did you read that? I have also never seen fatty liver in the top ten of causes of death even. The main ones I have seen are

Heart disease

Stroke.

Lung cancer.

Lower respiratory infections.

Chronic obstructive pulmonary disease (COPD)

Colon and rectum cancers.

Alzheimer's disease. (Currently Number 2 in UK)

Type 2 diabetes.

I have seen cirrhosis of the liver mentioned as way down the list in some reports. I suppose it may be higher in some countries where they drink a lot of alcohol.

HeronNS in reply to piglette5 years ago

Fatty liver can be caused by a high sugar diet I think. I also have heard that the Italians have researched the effects of coffee, and drinking five small coffees a day (not the colossal American style, the little Italian espressos) will help fatty liver return to normal. It isn't the caffeine either, because decaffeinated also is effective.

So fatty liver could be a symptom or result of another disorder which could be the actual cause of mortality

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PMRproAmbassador in reply to piglette5 years ago

Being a nerd I have just spent some time looking up several different mainstream medicine sites for the symptoms of liver disease - ranging from the Mayo Clinic to the NHS. Not one of them mentions sweats in association with liver disease except as an early sign of liver cancer - amongst about half a dozen different cancers. Night sweats should always be investigated to rule that out in any case but particularly in a patient with symptoms of PMR as PMR itself can be a sign of an underlying cancer.

However - many alternative sites claim night sweats to be an expression of yin deficiency which is found, they say, in liver disease. Hardly mainstream.

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Kixx5 years ago

My internist and rheumatologist who treated me in the city I lived in before tested me for all possible causes of the night sweats, fearing cancer. There was no indication of any pathology in any organs. When they finally checked the level of inflammation (ESR) we were able to identify the possibility is PMR. The Prednisone was immediately helpful.

I should mention that my diet is largely plant based with a minimum of processed foods, few (if any) sweets. I even avoid high glycemic fruits like bananas. I am extremely careful with my diet and eat primarily from my garden.

The primary trigger seems to be walking. If I walk four miles, I may be okay one day, miserable with fever walking the same diatance two days later. (I used to be a runner whose normal run distance was 6 miles.) Yet I can ride a stationary bicycle or use an ERG machine for 35 to 40 minutes with no I'll effect.

Sorry to go on so long. My deepest fear is aggravating my condition and causing the onset of GCA.

Thank you all so much for your input and concern. I am so very grateful for all your insights.

Susan

piglette5 years ago

I have just looked up the Australian Government’s Institute of Health and Welfare. Their top five are

Heart disease

Dementia and Alzheimers

Cerebrovascular disease

Lung cancer

Chronic obstructive pulmonary disease (COPD)

It does not seem to be in the UK’s top ten and is number 12 in the US. Possibly the same everywhere else too.