Just for the record, I am fine. Just feeling below par, no energy, weepy and trying to get up an on. Now trying so hard to get to 6mgs. Coming from 7mgs is always a struggle for me . Everyone is different. Which brings me to say that each message on this site is different. I got very upset with the confrontation within some for reasons within my personal life. I want to stay on the site because of the wonderful advice from many and my respect for them. I for one don't need upset within the site. But that is only my opinion. To all out there I send my love and best wishes regardless of who you are with this PMRand GCA. Xx
Trying to get up and running : Just for the record... - PMRGCAuk
Trying to get up and running
Written by
morrison
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73 Replies
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I think there has been something in the stars or planets creating negative energies this week and hopefully it will soon pass. Very pleased to hear from you. ❤
Possibly I am a Virgo ? Thank you so muche got your reply. X.. How are you my dear? X
Feeling better this evening than I was this morning, thank you. I actually mowed my back lawn today, and remembered how last year at this time I was struggling with a bad back and rotator cuff injury. So - progress! Slowly but surely we're getting there!
My husband's a Virgo and he seemed to be fine. I'm Gemini. ♊♏
My Father who is 93 is a Gemini. Split personality? .
• in reply toHeronNS
Happy to hear this! HeronNS!!!
Snap I am A Virgo and have felt the sad vibes this week ,I think Mother Earth is trying to say , we need to help each other more , big hugs x
Good to hear from you Morrison, you've done the right thing for you in taking a 'back seat' for a little while, that's good you can do that - but see how you've been missed! I hope things start to improve for you very soon and you feel better. Hugs xx
PS: did you see Book Club?
Bloody wonderful. Laughted my pants off. Oops sorry laughed my socks off (although I wasn't wearing them). So good. Xx
Which weren’t you wearing the pants or the socks?😂😂
No socks for me. Ha ha. X
Thanks for that Janette. I am also struggling at the same level of Pred as you. I feel more flu type symptoms than actual pain and I can relate to the low weepiness and sensitivity. In some ways this is my toughest phase of the illness. I am probably just fed up that recovery wasn’t linear, like I’d hoped for. I just get sooo fed up of being ill and I sense that family are too, that can be isolating. Sending love back to you, as ever, and extending it to our wider community too.
Me too. I am a wonder to myself these days. Very little stress tolerance, over reacting. I've been at 5 for three weeks and will stay here until I get back from vacation. Body better, but I am not even pretending. When people ask how I am, I just say, "not good". Damn adrenals and HPA axis or whatever.
I wish I had known this would be a dark passage. I would have done things differently. Actually, I would have been kinder to myself, avoided stressful situations and important decisions. Probably would not have undertaken the travel/vacation I'm embarking on next week. I hope I'm decent company.
Absolutely ! My husband suggests diversions and asks me if I would be ok and I just DON’T KNOW. I dread every plan and if it all goes well I’m astonished. Dark passage is a very good descriptor, my nights are horrible. I am relatively pain free and very flexible. It defies description really - blerg! What is HPA axis?
You will be your kind wise self next week, a complete delight to be around, as long as everyone understands that you will have to tiptoe away now and then for complete rest in a shaded bower. Have a lovely restorative time. 🌸
Hypothalamus-Pituitary-Adrenal, that complex party of bits that need to get their act together again before stopping pred.
Thank you Soraya mine are certainly scattered to the 4 winds. I have never felt like this before it’s a bit scary. I hope I’m not one of the unlucky ones whose Adrenal glands fail to kick in. I’m seeing my Rheumatologist soon.
Yeah - I have that fear too - wouldn't think mine were the best to start with before pred with years of severe stress in job and the other pain isaues I had - I'm absolutely feeling at the end of my tether especially as my Rheumy as I said before signed me off after a year (total madness) and my GP has been keeping me going with the steroids - so my next step will be back to some consultant or other as the GP won't keep giving me the pred. Good luck with your Rheumy visit let us know how it goes.
I had the same thoughts before my May holiday. I said if I'd felt the way I was this spring when we booked (last year) I would never have considered it. Did kind of collapse on the second or third evening, but after that it was okay, and in the end I had a wonderful time and would do it all over again. I hope you also find yourself able to enjoy your vacation.
It is the lowest pointh Jane of the withdrawal symptoms of coming get off Pred. I can't stand it. I even argue with myself ha ha. Not funny really So nice to know on this site that we can talk and be understood. Xx
I'm off for a 2 hours dog walk tomorrow, then my daughter's then picking up my grandson from nursery and then taking him swimming lessons HELP JANE. Sometimes need to get up and on. This bloody disease will not get me on my last legs. I sleep for 2 hours at a time at night. Awake sometimes for another 2. But I am managing at the moment. Tired out. But hate the emotional effects. I am Scottish. Get up an on. As I set to Melissa. "Lang May Your lum Reek ?,? Xx Wish you well my dear. This is what this site is all about😊😊 x
Yes, my sleep has gone to pot and the slightest stress is so difficult. I dread talking to doctors because they just want to add more drugs. Your grandson and wee dugs must help with a sense of purpose. I am commissioning people to do things to improve the house, then feel stressed when they come to do them. The scaffolding and workers on the neighbour’s property make me feel under siege. Maybe you should translate “ lum always reek” ie May your chimney always smoke - meaning prosperity and warm cosiness, because you have fuel for the fire, If I remember correctly. I agree the emotional effects are the worst. Bad week, due a good one soon.
I know what you mean by "under siege". When there's major upheaval around me, which has happened a couple of times since PMR struck, I head to the library, go to the children's department, find a book I can read in an hour or so, and escape to another world. I've found the books by Brian Selznick (Inventions of Hugo Cabret, etc) ideal for this purpose.
What a truly creative and empowering idea. Alas we don’t have a decent Library in Sheffield. I used to love going when I lived in other towns.
No public library at all? Isn't Sheffield an important town, big population and all?
No not important at all really since the collapse of the steel industry. Struggling from inadequate money from central government and libraries are a luxury as are our beautiful mature street trees apparently.
Why can politicians and the top administrators never see beyond the next election? What happened to the idea that we must bear in mind that our actions will reverberate for generations. Here we had until a few years ago a lovely little city with a central business area very much Georgian with a few more modern buildings, the more attractive Art Deco from the thirties, but others as well. Now the whole place is full of glass and concrete towers and most of the populace is appalled. Perhaps when the dust settles it will be okay, but it will look like any other place in North America, not one of the oldest settlements in the country. Not nearly as appealing for tourists or for most residents. But it's issues like this which upset me terribly, so I don't get involved any more.
Oh me too Heron. I love the architecture you describe. I bought my house in Sheffield because it reminded me of the elegant Georgian squares in my home town of Edinburgh. All thankfully untouched and just as I left my old home so many years ago.
• in reply tomorrison
Ahhh nighean taingealachd dhut agus ceart air ais aig ya !!!
Gosh this message was for Jane. Sorry you can all have it. 😊😊😊xx
I am finding at some doses I am very thin skinned with people but it passes.
Are you trying to reduce pred in 1mg steps or 0.5mg? At this level(7mg) it is recommended to reduce in smaller steps (0.5) and also using DSNS (slow taper )method.
By 0.5. Every other day.xx
Try to find DSNS method. It gradually reduces from one dose to lower dose over 4-5 weeks. If your old dose is 7 and new dose is 6.5 it goes like this:
1 day new dose, 5 days old dose,
1 day new dose, 4 days old dose,
1 day new dose, 3 days old dose,
1 day new dose, 2 days old dose,
1 day new dose, 1 days old dose,
2 day new dose, 1 days old dose,
3 day new dose, 1 days old dose,
4 day new dose, 1 days old dose,
5 day new dose, 1 days old dose,
new dose every day
Link:
healthunlocked.com/pmrgcauk...
I noticed this link too
healthunlocked.com/pmrgcauk...
Is this what someone was looking for the other day I wonder? I probably didn't take a lot of notice at the time - it had the word spreadsheet in it... 
Hi Morrison, so pleased to hear from you.
I don't comment or post very often but I get lots of support when I do and even from reading others posts.
I know when I'm struggling with PMR I can't even watch the news or anything else that's the slightest bit upsetting.
At the moment I'm in a good place on 7.5mg. Going on hols on Friday so staying on this but taking my stock of Pred in case I need to up it a bit. It's a 4 hour journey, but will have a break halfway or my legs won't move. Haven't had a holiday for 3 years so really looking forward to this. Although we did go to the Isle of Wight last year but that was for a double family funeral. And last July went to the east coast overnight but that's when the PMR took me over and I could hardly get out of bed or even walk.
• in reply toFootfairy-1
Sitting in the car for any length of journey is hard, when we go to Heathrow or Southampton we visit many Service Stations just so l can literally stretch my legs & extend my arms!
I had a Flare on a Cruise a good few years ago & could not get out of the car by the time we got home, my poor husband literally had to pull & roll me out! I don’t like long journeys but sometimes they have to be done.
Since we moved it’s only a 12minute drive to my Son & Daughter in Law instead of one hour 20mins!
Hope you have an amazing holiday & the weather is good to you! 🌞
Best Wishes
Mrs N 💅🏼
Footfairy-1• in reply to
😊
I never found that stopping and moving made any difference at all unless it was every 10 minutes which rather defeated the object! That was in the days pre-pred, now I have no bother at all. EXCEPT, in the car I have to drive - the slight movement of gear changing is enough to make a difference. The driver's seat also has a lumbar support which is essential for me to be comfortable. In the pilot passenger seat in the camper van I am as comfortable as can be!
I am still able to drive to Scotland. About a 8 hour drive with 3 stops for the dog on my own. So maybe I might have turned the corner? Or perhaps it is just sheer determination on my part am going next month if I can. I'll let you know.x
I did a 2,500 mile round trip a few weeks ago. Northern Italy to Rosyth via Whitby and Preston and back...
Were you the driver though. I am the sole driver with my dog? Please don't say yes.... Ha ha x
Oh PMRpro, I am so with you. I just finally did go ahead and bought (actually leased) a new car. At times my list of needs in terms of comfort with the steering wheel, suspension and seat adjustments made me think I should be searching for a wheelchair, not a car. Or, that I should have hired an occupational therapist by the hour to test drive with me.
I need a light weight steering wheel due to rotator cuff issues in my right shoulder due to PMR. I have scoliosis and multiple arthritic changes to my shrinking spinal column, so I need a cushioned suspension, not a sporty feel. I need a seat with lumbar support for a short torso'd person, not someone who is tall. I need a well padded driver's seat that adjusts high enough so that I only need one cushion to help me see over the steering wheel.
Who could imagine having so many needs? LOL.
Oh I am trying to reduce too - I can't seem to get down from 4 or thereabouts. I just cannot handle the shocking fatigue and the pain that all comes flooding in - weakness particularly legs that seem to turn to painful jelly - if that makes any sense!! Got home from work yesterday evening after a horrible day literally trying to prop myself up at the desk - I couldn't even speak to my husband and went to bed. So this morning I upped the pred again - to try get a handle on things. Just relentless. People wouildn't believe it if you told them how difficult this is. Sorry for sounding defeatist - having a bad phase too. Been battling for over 20 years with ME - then fibro and then this PMR - worst of all!!!! Sometimes it just gets to you. Very best wishes to you - hope you feel good soon.
You described it to a t! First time I’ve heard it put so well. Many posters talk about golf, power walks, hiking, mountain climbing, tennis, etc., none of which I am able to do. Your post makes me feel like I’m not alone, I’m not the only one. Thank you! (I’m going down to 4 1/2 using the dsns method; was at same point last year; couldn’t handle symptoms; went back up to 7. Now the same side effects are back...I must power through even though once again my summer is ruined). Hope you feel better soon! Me too!
What are the "symptoms" you are experiencing?
When you hit a wall at the same dose more than once it is usually your body telling you something. At this level it is either that your adrenal function isn't up to it (yet) or this is the dose you were lokking for: the lowest dose that manages your symptoms.
No you must NOT power through - that isn't the point of the exercise.
No energy, fatigue, vague unwell feeling, depression, lethargy. Cry a lot over nothing. It’s where I was a year ago.
If it’s low adrenal function, then dont I need to stay where I am until it resets? Like everyone else, I have lots of side effects from prednisone; I understand it’s not a race, I sure don’t want a flare...but it seems that at some point my adrenals will have to start to fully function again? Thanks!
That definitely sounds adrenal-ish.
Yes, you need to stay there or thereabouts - but if getting to 4.5mg is causing the problem and you can function better at 5mg then stay there. Rod Hughes likes to keep his patients at 5mg for up to 9 months - it lets the body catch up. It is low enough to prod the adrenals into action (if they can) but allows you to get on with life better. The physiological dose is about 7.5mg - once you are below that the signals are going out to the HPA axis and 5mg is well below. It doesn't happen in a straight line - and when you keep changing your dose, however slowly, the entire balance has to reset. Keep the dose fixed at a low level and the rest can get its act together in peace.
Oh pmr pro...what is the prudent course of action? Go back to 5 for several months or stick it out at 4 1/2 for a while longer? (Using dsns method, I’m slated to go to all 4 1/2 next week.). Or maybe the better question is: how long should I give 4 1/2 a chance to see if my adrenals really do reset? Did I read somewhere it might take a couple months (or more). I’m sorry I’m hacking this post, I’m just at a loss. Thank you again.
If you felt pretty good at 5mg I would go back there - you can't function all summer like that, you said you lost last summer too and it simply isn't worth it. As I said, 5mg is plenty to wake the adrenals up - just more gently so it may take some months and that is why RodH does it that way. He obviously thinks in terms of 6 months or more. The people who sail down the reductions never come up against it as their adrenal function settles to an acceptable level quickly. Even once you get off pred your adrenal function can remain dodgy for up to a year.
One lady on the forum who does have proven very poor adrenal function felt fine even at 2mg - so really how you feel at low doses isn't always accurate. But if you feel awful and a touch more pred helps, take the assistance and run...
Thank you for your thoughtful reply. Like everyone else, I’m just growing so old. And not in the way I had planned....
It’s me again—had such a miserable flu-like day today it was scary. Could have been some kind of food intolerance, I have those every once in awhile but couldn’t pinpoint any culprits. So per your suggestion, I went back up to 5 mg. How long do you think I should stay there before trying 4 1/2 again? I know you don’t have a crystal ball; I’m just wondering whether you think I should wait say a full 6 months before I even try to reduce again...like many others, I have lotsa side effects from the pred; I know that you understand the frustration all too well. Like you always say, it’s not a race...I get that. And I want to avoid a flare at all costs. But I am so hoping it might be ok to try another reduction before 6 months...let me know what you think. thank you so much.
As you say I don't have a crystal ball - but if it were me I'd spend at least 2 or 3 months at 5mg before trying the 1/2mg again. Obviously you can feel the difference? If it works you can keep trying - but if you start to get the feelings again, stop and go back to the dose that was good.
Bear in mind that last year when you went back to 7mg you had very quickly lost all your perceived benefit of a lower dose. Pushing it often just means you end up taking MORE pred, not less.
I was still working with PMR, probably for about six months, but wasn't diagnosed and didn't start pred until after retirement. I don't know how people work with this disease and have great admiration and sympathy for those who do.
Its like living in a haze!!
In my workplace I could have kept on working a bit longer, although I was in my late sixties by then. In fact six more months would have got me to the twenty year anniversary, and a few months beyond that the signing of a (very belated) new contract which would have given me a slightly higher pension. I guess I was in a haze, too, because I didn't think those things through and it was a financial loss.
I know - you just want to feel "normal"! Without the stress of having to appear normal when you feel like hell!!!
I am trying to drop from 7 to 6.5, alternating 7 one day 6 the next. After a week I started to get pain in hip and shoulders again so up to 7 every day for a while.
So pleased Morrison that you are still in touch and are getting on with it, albeit difficult. I sometimes think I would like to be battling with 7/ 8 mg of pred ( battling with 16/15mg of pred. But of course I wouldn't. Grass always seems greener on the other side doesn't it? . With this condition there are challenges all along the way.
Yes, the problem with that particular taper, the one around 7 mg, is that's when the adrenal glands really do have to wake up.
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