Where am I................

Hi , my state at the moment, 6'3"-16 stone-81years.PMR 4years,10mg going on 9- last episode -DSNS route. Wobbly ,weak legs especially noticeable when rising from a seat, relieve bladder often, some sweating ,comes and goes, little feeling in feet .a bit cramp and yet I had a good swim today. crawl-all arms, legs, feet going well but I feel my body is just not right, feeling like 'death warmed up' my blood pressure and pulse are good, but still feel feel concerned-also heavy headed ,some pain in the head ,know and then. I have not had 'these' symptoms before - plenty other well known. I have changed my Pred time to 7am ,before 9am after 4 years, could this have a influence. what have you dear fellow sufferers,John

[DorsetLady PMRGCAuk volunteer]

Hi John,

Sorry to hear things are not too good at present.

Many of the effects you are having can come from Pred, but if you haven't had them before, then maybe it's more likely to be your body telling your adrenal glands they need to get going again. Anywhen from just under 10mg Pred, they need to wake up - it varies from person to person - personally if felt like death warmed up from 6mg down to 3mg. But you're obviously quite a big guy and active, so maybe your body pre Pred produced more. Who knows?

Can only suggest you either a. continue with DSNS plan, and maybe try only reducing 0.5mg at a time, or b. stay at 9mg for a couple of months - either way may give your adrenals a chance to get into gear.

Wouldn't have thought your change of timings for taking Pred should have made a significant difference.

[Hidden in reply to DorsetLady]

Thank you DorsetLady, - There is fantastic scubadiving round the Dorset coast ,if only I could lift up the Diving gear these days I would be back in! Appreciated ,particularly the point that the adrenal glands need to get going again John - back to my underwater dreaming!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Yes, we have a lot of wrecks offshore....and some onshore as well 🤔

Take care.

[Hidden in reply to DorsetLady]

Yes and I'm one of them

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Snap!!

[Hidden in reply to DorsetLady]

I don't think so!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Nice if you to say so .....but as the advert says ...should have gone to Specsavers!

[Hidden in reply to DorsetLady]

I thought flattery would get me back in your good books. Only kidding

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

👍

[Margaret1951 in reply to Hidden]

I am one of them also ! Don't think my body knows I have adrenaline glands anymore either ! 😬

[Hidden in reply to Margaret1951]

[PMRpro Ambassador]

My personal suspicion might be that you have just got to the point the adrenal glands need to wake up. You are a big person and if you are a "50%" person in terms of how much pred you absorb you are currently getting only about 5 or 6mg-worth of pred - less than a physiological dose. But since the other option is a minor flare - don't reduce any further and consider going back to 10mg.

Not a race, no hurry...

[Hidden in reply to PMRpro]

Thank you PMRpro, - appreciated ,particularly the point that the adrenal glands need to wake up! John - some sanity returns

[Hidden]

Hi scubadiver John, the symptoms you describe are very similar to mine. I have had PMR for nearly 3 years. I am trying to get to 6.5 from 7mg using DSNS method. I however am a 11 stone 72 year old so our steroid requirement would be a bit lower for me to achieve the same result (I would think). So the advice I was given today from worthy members of this forum was to stop trying to reduce for a month, then try again. OK you might think you are losing time, however this thing called PMR 'rings the tunes'

So that's what I am going to do, if that any help

Pete

[Hidden]

thank you Pete, I will lie low for a while, and just delay the scubadiving also! Noticeable that I can at the moment sense when the Pred kicks in. About 10 to 11 am .Up to then I just cannot seem to get up any' get up and go'- some times just go back to sleep after giving the wife her tea! -but she is not taking Pred!

John

[PMRpro Ambassador in reply to Hidden]

What time do you take your pred John?

[Hidden in reply to PMRpro]

Hi PMRpro = @ 7am now. The info I received for my 'flare', (Where am I ?) kicked in the other facts I have read in the column- not only reducing the Pred, also reducing my Setraline - keep happy pill, at the same time and to add to it swimming every Friday, also car driving one w/e 40mile rtn and next w/e 80 mile rtn . -I think I have been overdoing it somewhat - Hey Ho , we live and learn and now I taking easy again .I almost forgot.- went to see the NHS Physio, 2nd visit and when asked how I felt -said' you did not say this before-tried to say PMR is not like that, it can vary according to that which you are doing about at the time .Gave me some back breaking exercises to do. Regret, but will explain the rudiments next time of my background problem- I do not believe they have read my Notes -I am not doing the exercises and also keeping my TENS machine on over night- which I was told not to-although I have not read otherwise John

,

[PMRpro Ambassador in reply to Hidden]

Have you tried taking it earlier - or even the night before? Or part of it the night before?

Your physio doesn't appear to know much (for that read "anything") about PMR...

[Hidden in reply to PMRpro]

thanks PMRpro -I have tried that- 2mg night before(late evening)+ 8 @ 6.30 am. It was no different ,tried for 2wks & then back to 9.5mg

@ 6.30 am. Tired, at times body ache all over, back to the DeathWU and pain killers-Para+Caf. Could it be the weather? It has been quite warm down here @ Brighton.-just a sheet and wdws open @night.Physio has signed me off- just for back ache, found it difficult against PMR .although tried to help but.............I regret it has been getting at me but putting it down to the weather!-blame it all the time!-sorry to come back, have you Crystal ball? but just your words of wisdom John

[PMRpro Ambassador in reply to Hidden]

Mine is myofascial pain syndrome - having massage and myofascial release treaments at present. But nearing the end I fear

How about just a tad more pred? There is no virtue in being on too low a dose. And yes - weather makes a BIG difference in rheumatic disorders. Especially rain/humidity.

[Hidden in reply to PMRpro]

Sorry PMRpro that you are coming to be sad - I am going add 2mg to my 9 .5 = 11`5 ,try and take it a mite easier.John

[HeronNS in reply to Hidden]

What are your "backbreaking" exercises, Scubadiver? Does the physio check you can actually do them as prescribed, and suggest only a few to begin? If you have difficulty doing the prescribed movements maybe you could ask to be given some preliminary exercises - ones which will strengthen you enough to be able to progress? Really, exercise is so important for us even a little will help towards recovery. There is the issue of time, your physiotherapist may feel s/he has only just so many sessions in which to treat you, but you'll benefit more from a gentle start which gets you moving in the right direction, and with that start you'll be more able to carry on and continue to improve once the physio is over. All the best!

[Hidden in reply to HeronNS]

Hi HeronNS- back on bed, draw knees up -clasp knees- bend neck and shoulders up, and pull up knees and together with chin touching knees- hold to count of 5 and the repeat 5 to 10 x. And same first position, knees up- roll lower half- to right x5 and to left x5.every day - agree I am looking at Tai chi and adding a further swim once a wk. John- plus it looks like I will have increase the Pred a Smigin!

[HeronNS in reply to Hidden]

That's fairly difficult when you have PMR. I wonder if a preliminary to that could be either the neck, or the legs, not both together? None of my exercises are like what you describe, although one way or another I do exercise both my neck and my knees/hips - just not at the same time. Also it may even be harder on the bed, because it gives under you, whereas an exercise mat on the floor (preferably also on top of a carpet ) would give you more resistance and make it easier to perform the motion. Just a thought.

[HeronNS in reply to HeronNS]

On the other hand, I shouldn't try to second guess your therapist as the exercises are designed for your needs.

[PMRpro Ambassador in reply to HeronNS]

Funny, that was my immediate reaction as I started to read John's post!!!!!

Chin touching knees????? I probably can now - but I wonder how many of us can?

[HeronNS in reply to PMRpro]

One of the last things that happened before my desperate trip to try to get a doctor pre-diagnosis was losing my ability to pull my knees to my chest, an exercise I'd done for years and years; it's to help my back. Post pred no trouble at all. Never have raised head at same time. Tonight as an experiment I shall try to do this exercise, but I bet I can't. I have several other exercises for my neck.

[Hidden in reply to Hidden]

Hi scubadiver John

"I just cannot seem to get up and go"

I call that fatigue, and most of us, if not all go through that condition and it seem to vary between person to person. I have a friend who has just recovered from PMR. He said that he went through a period of getting up in the morning to take his pred with breakfast and then he would go back to bed until lunch time. Had his lunch and then went back to bed until dinner and then back to bed to watch TV in bed and then asleep at about 9pm. I couldn't believe what he was telling me He said he just couldn't stay awake. He was not over weight for his size and far from a couch potato. So the PMR and the Steroid really affected him

He has just recently recovered from PMR after 4 years. He is 79 and frequently goes on 4 mile walks and is very active for his age.

Fortunately I am not as bad as that but I have had to cut out a lot of activities due to the lack of energy and fatigue. I certainly couldn't scuba dive at the moment. The last time I went scuba diving was 5 years ago near Manly Beach in Australia were my son taught me. He is a qualified teacher with all his padi certification. I would just love to do it again

Happy days

Pete