What is normal ? 6.5mgs different pains every day

[DavidMF]

PMR since Nov. 2014. Three/four relapses when reducing to 8mgs. Using DSNS & 1/2 megs. 9 Months ago I started taking Pred. early morning 5.30am with Yogurt. Hard work but have now reached 7mgs. Odd hand pains and lack of strength early morning, some shoulder pains, they go by 11.00am. Generally managing to do a little more work each week. Just finished 6 months of Diffundox XL & Finasteride to reduce Prostrate enlargement (Normal at my age 74 they say) This morning having had 6mgs yesterday, today 6.5mgs. Glowing pains down from my shoulders into my hands 1st 2 hours. Feeling odd. Is it PMR, is it ???? Every day I seem to have to consider what have I been doing? Why do I feel this way? Is it something else? even after all this time I can't tell till afternoon. Pains gone = Steroids working. Still there, it's something else. It's so hard for anybody around you to understand "You look all right" Over the last two months I've lost 1 stone along with my wife on a slimming classes. My BMI is down to 25.8. I'm lighter than when I started on Pred. Just cut out all the silly extras and eat more fruit.

Is this a reaction from my adrenal system? being woken up? Any tips on how do you tell?

I do have an appointment booked with the Dr. but that's 8 days away and no doubt it will all be different by then. Thanks in advance.

[DorsetLady PMRGCAuk volunteer]

Hi David,

Sorry to hear you are struggling so much. If you had 3 or4 relapses when reducing to 8mg then that tells me your body/PMR wasn’t ready for that reduction. And “hard work” to get to 7mg just re-iterates that!

I think sometimes we, and the doctors, assume once we get below 10mg it’s going to be easy - it isn’t, in fact I think it’s a damn sight harder than reducing at bigger doses. Plus around 7-8mg levels the dreaded adrenal glands start raising (or not) their ugly heads. I found fatigue to be the biggest thing on the agenda when the adrenals were faffing about, as do most people I think.

As you haven’t mentioned that, personally I think you aren’t on enough Pred (you probably don’t want to hear that) for what your PMR needs.

If it were me, I’d be inclined to go up to 10mg for a week and see what happens. If your symptoms go, or at least subside dramatically there’s your answer. If not, then there may be other things going on. By that time you’ll have Doctors appointment and you can discuss what you’ve tried and also the way ahead.

Your added prostate problems/medication probably haven’t helped (my hubby had same so do know a bit about it), so hopefully next time around your reductions will go more smoothly.

[DavidMF in reply to DorsetLady]

Hi Dorset Lady

Thanks for the swift reply, it really helps. Not sure about trying to increase for a week, though I do understand why. I'll see how today goes as I've been going so slow and carefully down. I'm taking 4/4.5 megs in the morning, 2mgs at 8.00pm. Using the morning dose to reduce by. Fingers crossed (If only I could!!)

[DorsetLady PMRGCAuk volunteer in reply to DavidMF]

Okay.

Can understand your reticence to increase, but you do need to get things under control, so trying it your way first may work.

But remember there’s no point in suffering when the answer may be a couple of mg extra! Doesn’t mean you won’t get down, but maybe just not at the moment!

[DavidMF in reply to DorsetLady]

Since my last reply, It may just be a reaction to last nights meal, very mild food upset, it's too easy to blame PMR for everything, I'm waiting this one out, but will go up if not improved.

[DorsetLady PMRGCAuk volunteer in reply to DavidMF]

Good!

[PMRpro Ambassador]

"Every day I seem to have to consider what have I been doing? "

Pred just manages the inflammation - it DOESN'T make any difference to the autoimmune part of PMR which continues to chug away in the background, attacking your muscles and leaving them intolerant of acute exercise. If you overdo things and "abuse" those muscles, they will develop perfectly normal DOMS, delayed onset muscle soreness. Because of the autoimmune disorder they aren't able to repair and regenerate as normal - and will be sore for much longer. That is why we tell you to pace and rest approriately and then you will be able to achieve more and not get as sore.

[DavidMF in reply to PMRpro]

DOMS 9 weeks ago at short notice I was asked to clear our daughters wood shed of logs. Five of us threw cut up logs into a wheel barrow, I lasted 20 minutes and said "I can't do anymore" The following day I realised how much damage I'd done, It took 8 weeks before the pains in my upper arms eased off. I had really been feeling quite good before that. I've been much more careful since, not sure if the hands are the same issue, it's like arthritis but eases off the late morning. Though it's still in the background.

[PMRpro Ambassador in reply to DavidMF]

Learning curve!!!!!

[Hidden in reply to DavidMF]

I can sympathise. I overstretched myself by "accident" yesterday on the second part of 9 to 8mg Dsns (4 days of 9mg...on day 2). I was very tired afterwards and not myself. I had to take the rubbish from my garden which neighbour kindly put in my car...my new car. I was too tired after going out with my friend to drive to the tip. I knew I had to do it today so got in the car and omg the smell!! I drive to the tip and lively man emptied it but then I had to go and get some car fresheners and clean the back if the car. Still smelt sodrive home in the rain with all windows wide open. I have only had the car a few weeks!! Hey ho. Back to the point. I have been laying here with very painful legs and burning shoulders. Partially delayed onset in musckes but perhaps a but if steroid withdrawal. Taken some painkillers and amitryptiline (borrowed from night time dose). I can still feel the burn but not as bad as 2 hours ago..so yes. A learning curve.

[GOOD_GRIEF in reply to Hidden]

re: Car smell, try sprinkling baking powder on the carpeted areas. Be generous, but not too generous. Leave it there for a few days, it won't do any harm. Then vacuum it out. If at first it doesn't do the job completely, try again.

[Hidden in reply to GOOD_GRIEF]

Thanks. Will give it a go!

[SheffieldJane]

Well done with the weight loss. I can empathise because I am at the same stage as you and rarely symptom free. Not always PMR, it’s quite hard to read. I have decided to stay at 7 mgs for a while in the hope that the right time to taper will present itself. I admire your efforts to build up your health in anticipation of being PMR free. My GP’s recent response was to be agreeable to my waiting it out and managing my own taper. I have the occasional few hours when I feel totally well and I take great hope from this. These spells are illusive and I wish I knew the recipe. In the meantime I have developed healthy habits that have been a gift and more self knowledge. So perhaps this is the silver lining. Courage!

[DavidMF in reply to SheffieldJane]

We've certainly tried some interesting recipes and our shopping looks extremely healthy, compared to others. My Doctor leaves me to it, the Rumy. (with health unlocked) gave up and wrote David has this under control, that's 2 years ago.

Hope rains iternal!!

[maria40]

I'm experiencing frustration getting down from 10mg. First started this reduction 2 months ago using very slow taper but I had to go up again when I reached 8.5 as I had a flare. Now I've started the reduction again and reached the 4th week of 9.5 to 9 and have had another flare so am not going to fight it but have gone back to 10mg. But it's very frustrating as I've been on pred since 2000 -initially for PMR latterly for GCA too - and I do want to get it down, I'm realistic enough to realise I may never get off completely but 5mg is my goal as I have been there before. However, I have learnt from experience that there's no point in trying to fight my way through a flare.

[PMRpro Ambassador in reply to maria40]

I have been down to below 5mg in the past, about 2 years ago I had a flare and am now struggling to get to 7mg. I had said if I get to 5mg again I will give up trying to reduce! Looks doubtful for me getting there! At 7mg I feel as if I am wading through treacle. And the atrial fibrillation also becoming a real pain for some reason.

I've had PMR for 14 years, been on pred for nearly 9 years - so I don't expect to be off pred any time soon...

[Kcartney103]

I ask myself every day is it PMR, is it spinal stenosis, is it arthritis in my hips causing my symptoms? I accidentally did an experiment one day when I took my pred, Got distracted, when I went back to complete my dose, I couldn't remember if I had taken 5 mg or two 1 mgs. (I was on 7 mgs) so I took 5mgs. Boy oh boy I felt so good that day😏

[DavidMF]

Update: Thanks for all the helpful comments. Today I've just felt odd, managed to get out and Ramble for 5 miles, great achievement, collapsed into sleep this afternoon. Hand pains much reduced. So I look back and think it was a food related issue.

Back to looking after PMR and carrying on the downward reduction process. See Dr. next week when no doubt I'll be fine. Need to get off the Prostrate tabs. Review the blood test of 4 weeks ago and get enough Pred for a holiday trip. Looking forward to some sunshine.

Thanks again for all the support.