Has my PMR Gone?

[caftan]

Hello friends, I haven't posted for some time now partly because I've been feeling very depressed on account of my worsening health and my GP has prescribed Mirtazapine to be taken every night before bed. I've been on them for a few months now but can't say in all honesty that I am feeling any better. I had a face to face consultation with a GP at my surgery yesterday morning as I need to try to explain exactly how I am feeling at the present time and have been for some time now. I keep being told by the doctors at my practice that the PMR is no longer there because all the blood tests have come back clear with no sign of inflammation. I don't understand this because I have no energy whatsoever and I feel worse now than I did before I was diagnosed in August 2019 before I went onto the steroids. one of my symptoms then was that I had to keep sitting down i.e. I could not stand for long as my body was telling me to sit down. I am currently on 7mg per day but the doctor wants me to reduce by one milligram a month until I am off them. What do others think on this forum, I would be interested to hear. I will be 84 this month. I also have a hip problem which is causing me a lot of pain but I think it may be some time before I get the op as I have yet to see a specialist.

I'd love to think that I will feel well again when I get of the steroids and have had the hip operation, it's what keeps me going.

[SnazzyD]

Oh dear, it really is hard to bear when one starts to feel worse than before when the expectation is that one should be feeling back to life. We can’t say exactly what your issues are but we can take an educated guess based on the experiences of others. From your description it sounds like your pain is from a hip issue that isn’t PMR though it isn’t clear that whether you have had a proper diagnosis from a specialist yet. The feeling of depression, weakness, fatigue and nothing left in the tank could well be due to poor adrenal function, especially now you are at 7mg. When you get below 10mg (usually 7-8mg) you need to start to make some of your own cortisol to make up for the shortfall in the artificial version of Pred. Before this there was so much Pred in your system your adrenal glands didn’t need to work and went to sleep, so to speak. Quite often they take a while to get going and one can feel just dreadful until they do. I found 7-5mg the worst, feeling like a shadow with anxiety, depression and feeling like this was it forever. Doctors sometimes forget this small (ha ha) issue for people coming off long term steroids. 1mg per month was way too fast for me so I had to do 0.5mg over anything from 4-14 weeks. The lower I got the slower I got.

Have a read of the information in these links from the FAQ. It is essential reading for those on low doses.

healthunlocked.com/pmrgcauk...

I’m not sure how your doctor can say your PMR is gone because 7mg is plenty to keep it at bay unless it is raging. If 7mg is sufficient your bloods will show normal.

Is there a more understanding doctor you can see? One that understands quality of life for a start!

[PMRpro Ambassador]

Very clever that doctor - NOT! If you are still on 7mg of pred and your blood markers are "normal" all that talls anyone is that if the PMR is still there, then 7mg is enough to counteract any inflammation being created. However, 7mg is a point where your own adrenal function is still being well suppressed by the endogenous steroid but isn't quite enough for you to feel full of beans. The only way you know that PMR is gone is to reduce slowly to zero and stay off pred for 6 months without symptoms returning.

To be honest, it is questionable whether, after nearly 5 years and at your age, your adrenal function will magically spring into life if you start to reduce the dose at the rate of 1mg per month. And then you will run the risk of having an adrenal crisis after feeling even worse because of them forcing you to reduce the dose. Especially since the hip problem is probably increasing your need for corticosteroid, with no cortisol, you need the pred.

As Snazzy says, you need a doctor who understands PMR and QOL - which all sounds a rare bird in your practice! Do ALL of them have the "let's get this elderly lady off pred asap" mission? Is there anyone with a bit more gumption?

[caftan in reply to PMRpro]

Thank you PMR PRO your replies are always so helpful

[SheffieldJane]

From my own experience 7 mgs is a very tough, if not the toughest dose. You are contending with an Adrenaline struggle as you reduce below 7 mgs which can be shattering, it was the first time for me with PMR and the second time with GCA. Of course your blood tests will appear normal because the inflammation is being dealt with by Prednisalone. I wish there was a way past this stage. Lots of rest and a very slow taper of tiny well spaced decrements is all I have found. I am not familiar with Mirtazapine, I am reluctant to take a drug that is probably making me worse. Hold on tightly to your goals, you will get there. When you reach 5 mgs and less have a morning cortisol test and further tests if deemed necessary.

[caftan in reply to SheffieldJane]

Thank you Sheffield Jane

[Nextoneplease]

Dear caftan

I am sorry to hear you’re having such a trying time. What is the matter with this GP? You’re in pain, you’re on 7mg which is tough to reduce from, you’re low in mood…..what is he trying to do to you, recommending you reduce so quickly? It seems to me this ‘plan’ is neither practical nor kind. I hope you can find a GP who has a better understanding and who values quality of life.

All the best to you 💐xx

[LocalHero42]

My PMR was finally diagnosed after 18 months of suffering by my Rheumatologu Consultant who said that many in the health profession seems blind aided by the fact that PMR does not always show up in inflammatory marker tests. I was failed by GP’s and hospital experts. My diagnosis was eventually worked out by my wife who suggested I raise the PMR possibility with my GP, this then did lead to my seeing an expert. So beware those inflammatory marker tests.

[PMRpro Ambassador in reply to LocalHero42]

Whoever your rheumy is - could they shout this more loudly? The acceptance of unremarkable blood markers would make such a difference to a lot of us.

[caftan in reply to LocalHero42]

Thank you for replying