I've had enough. I've reduced to 20mg pred. and it seems ok so far. A few niggles like slight head pressure across top late morning before next pred and some slight rib/back stiffness. I woke today and legs were burning and hadn't obviously done anything. Had meds and checked BP 105/73 heart 100. Decided to start turbo easy 40-50rpm 20 mins continuous. BP after 118/81 heart 85. No 3 exercise to elevate legs for the swelling still present for 30 mins. BP 96/62 heart 68. looks like slightly too low BP but I'll continue this for a week easy twice a day and see where we are at the end. Can't be any worse than passively waiting for something to improve. Track bike set up for training fixed wheel 7.2meters per crank revolution. Therefore at 40rpm 288m, 50rpm 360 and so on. Aim is normal cadence at 80 rpm. We'll see how things improve over the weeks. I'll update daily if anyone interested in watching paint dry
Taking Back Control of Recovery: I've had enough. I... - PMRGCAuk
Taking Back Control of Recovery
Dear cycli. I hope the adjusted and steadily increasing training helps. My own experience was at least positive. I started on my stationary bike when I reached 20 mg pred and when I was at 15 mg I did daily 30 min 170 Watt (average) training units. With the help of Tocilizumab I was able to taper rather quickly but what I definitely noticed that as soon as I started regular exercise (really pacing at the beginning but pushing harder when I felt it was ok) I felt much better.
cheers for that DT2. My thinking exactly so good to hear it should work. Nothing serious to start but slowly building up. I read your profile and so glad you got back to cycling and running. No TCZ for me so slow and steady reduction and very gradual build if possible.
Hi Cycli! So glad you are willing to experiment -- good or bad results - illustrate to me that I too need to continue adjusting my body and mind.... not just zone out. Thanks!
Cheers D2C. I'll watch it. I have done enough training to know how to start easy and after 2 years no cycling the deterioration will take a long time to overcome.
I can't ride a bike (hangs head in shame) but as a UK athletics coach I can say that in long distance running if you have say 6 months off it could take the same amount of time - i.e. another 6 months - steady work to get back to your previous level. I haven't run since 2016, so if I start now then I'll be competition fit on 2028 when I'm 72! Maybe I should learn to ride a bike instead. Never too old 
so true JanetR. I'm BC coach(was). I'll never attain previous level but not important. Get fit first and worry about level later. where are you? I have spare bikes and all the time in the world it seems. You can't fall off a bike set up in a turbo trainer and that is the best way of recovering what we have lost with these drugs and PMR/GCA. I can guarantee to coach anyone to ride a bike if they want to.
Kind offer cycli but I think I'll give it a miss for now... though never say never I'm in Hertfordshire.
i.m coming down there soon to deal with a property. Where abouts could meet up.
Courage cycli! You can do this!
So kind Jane, I do hope so. Don't want another flare.
Good luck! I am the amateur member of the team with the cheapo stationary bike but I have also started playing The Great Game. Adding a few minutes more each day on the neglected bike to my walking and stretching exercises.
welcome. It's not how expensive the kit is but how you use it. Normal cadence when fit is 80 rpm so the task is to build to this in an easier gear and keep a fixed time for the exercise. That way you understand how you are improving. The main point is to do the time set without stopping or lessening the cadence. At this point you can click up one gear and repeat at the faster cadence for the same time. If too hard drop the cadence to 60 or 70 and work up again to 80 for the duration. In my case with a fixed gear to do extra work I can either increase the cadence or duration. I could use 120 as the target for training. Racing I could achieve 200. Vicky Pendleton could do nearly 300 but only for short final efforts like VO2 max . 10 to 15 seconds
It doesn't last but riding the bike is creating periods when I feel almost normal. (4.5mg FYI)
No it won't last all day but gently improves everything in the body. It will gradually increase in duration as your general fitness does. The key is to be constant in your efforts and increase the load on your system gradually so your endurance builds. Done properly its a slow but gradual progression to improvement without putting too much stress on you.
Thanks for the advice. Will do my best and see where I get. Heatwave brewing down south so am forgoing afternoon walk.
brings back memories of when I lived in St Leonards playing for Old Centmodians in Bexhill and for East Sussex no9 . Once against a prison team from Brighton. tough game. First job for Collins and Hayes. Happy days driving the beautiful lanes in my MG
You would be more welcome on your bike these days.
agree, but in the 70's was less busy
Brighton is now as bad for bike theft as my former home Cambridge. They steal almost everything however well chained. I live half way up a steep hill and my street corner is a bike accident black spot. Several friends have been hit by around town by vans. They are usually mown down at junctions or on roundabouts.
No bike lockers in my street. Would have to carry my bike down a steep narrow staircase to get it to safety in my back yard. I gave it to my lazy sister and it now lives a lonely life in rural France.
that's a sad end. I put the first CCTV security control room in place there when i designed and made them so they ought to have pics of most thefts.
There are strange regulations about who you can show CCTV footage to. If your bike is nicked outside a shop they can only show the police and they are too busy to care. I worked in a shop and unless you have a clear image of the perp in action smashing into your door and ripping your till out they won't show any interest. The till was empty as the notice on the door said. He rode up on his bike and pedalled off afterwards after causing massive pointless damage.
that's not good. Careful we don't wander off topic as we are into policy issues. It sounds like their reaction to poachers and such like up here. A general laziness and unwillingness to confront the known villains. Trouble is it all adds to our stress because we can see a solution but no one seems to care.
Glad to hear someone else wants to get off prednisolone sooner. My gp surgery is useless so I am doing my own tapering off pred. Just gone down to 2 mg. so we will see. Not being stupid. Just keeping an eye on myself
Don't be misled - EVERYONE wants to get off pred whether sooner is mentioned or not. However - not always a lot you can do to influence when.
Good luck cycli 😊
I have an exercise bike that I haven’t used for years. I used to love it - perhaps I should aim to restart slowly. Unfortunately though it’s in our (converted) loft so not a good idea in this heat!
All the best, keep us posted 😊x
go get it. I'll talk you through starting. Simple steps are back a couple of posts. Just done day 2 at 55rpm. I'll stay at 60 tomorrow hopefully for a while. Harder but ok. monitoring bp and heart. all over the place but just about ok. Going to be slow work it seems as they work harder . time will tell
Sadly can’t get it down the stairs 🤷♀️and no one to help 😟
You’ve reminded me of it though. I definitely need something to keep my legs and heart going as my arms and shoulders are very delicate at the moment….
upper body exercises from seated position maybe with light weights in hands using core muscles should work for that. Not my speciality. Bench work does that for me in the workshop not gym. Can't you find someone to help you?
Thanks cycli 😊
Difficult to find anyone to help - it’s an awkward job - plus I have to admit, hubby doesn’t want bike in public view downstairs - and I don’t want it in grandkids’ bedroom 🤷♀️
I’ve fallen at the first fence, haven’t I ? 🥹 I’ll maybe start with light exercises as you suggest x
not fallen. It is unreasonable to with hold a piece of equipment you can use to greatly improve your health and ability to function more "productively" stress that and it is your house as well so earmark some territory and go for it.
Thank you for the encouragement cycli 😊
Could you pay someone who does odd bits of building work or other household jobs for half an hour to drag it down for you? Mine is stuck in my basement. Cool so good for summer but not winter.
I find because of two blown ACL joints and torn ligaments, that I can't run at the moment BUT good news is I can still cycle. So I use a really nice recline bike at my house, and just got a free even better exercise bike given to me to use at my cottage. I was finding walking was not enough to get my heart rate up to be cardiovascular exercise. So I do love that also I can read a book while riding the bike (and forget I'm exercising, hah!). We must do what we can do.
so we should. keep it up.
As promised day 3. Was hoping to sustain 60rpm today. Nada. Whilst all else in order legs wouldn't do that. Started at 45 then 50 and 55 finishing last 5 mins at 60rpm. Good heart rate and breathing towards end but harder work today. I'll try and fit in another in afternoon then take a rest. last night BP/pulse 123/88 86. Morning BP pulse before turbo108/81 68 immediately after turbo 114/78 113 BP/pulse after 10mins 94/67 102. 1,5 hrs later BP 86/64 66. It was slightly lower on bp so I suspect that my other symptoms of blurriness, faintness and dizziness are the signs of slightly too low a blood pressure. I think the turbo should gradually improve this as my heart recovers some of its previous ability. We'll see. I use the simplest possible basic trainer. Fixed pressure on rear wheel so constant resistance a given. Only variables therefore are cadence and rotation. I can change the gears but at this setting it is a reasonably hard gear so will leave it .
Come on - you know as well as I do that a rest day is important. And with that BP of 87/64 - no wonder you feel like that! Do the doctors know your BP is getting that low?
Just off the phone to heart nurse who does house visits to me regularly. Going to reduce ramipril to 2.5mg as thinks that is contributing. also taking furosemide down to 40mg. Believe me I am really doing nothing apart from walking around like a zombie.
Too poxy hot for sustained exercise! Walking to seafront was sufficiently sweaty. Strawberry Frappe from Costa got me home again.
Where's that? Mere 28C here - but for us it was unusually warm overnight.
Brighton. 30° and rising. Last night cooled down but it won't be doing that from now until Monday? I hate hot nights. The helpful breeze seems to have dropped.
According to the forecast our usual low overnight temps should be back - it wriggled down to 17C overnight which is about the limit of decent for me. Been 11C the last 2 mornings - bliss ...
Same here and it was lovely but think that we have a stretch of nasty nights coming up. Hope nobody sets light to the parched South Downs just outside the city.
desperate for rain here as we need grass for the sheep. Still green though , not like parched south. That's one reason we moved North apart from it being so beautiful and unpopulated. Having our own spring supplied water which has not dried up and no water charges is bliss.
My Grandfather was a farmer in the Cambridgeshire fens. I guess that the dykes and the peat fields will be drying out. I used to live near the river Itchen in Hampshire. They have a hosepipe ban to try to protect the rare species there.
We moved from Ashwell near Cambridge. The springs in Ashwell dried up 20 years ago and they had to pump water from afar to reinvigorate and keep it flowing in order to preserve a rare flatworm. So they run but it is a manmade solution to correct pumping too much for overpopulated South. crazy.
I grew up in Thriplow just south of Cambridge and used to go out counting rare orchids. Now you mention it I think they did something similar there?
I think there is an aquifer stretching across the continental plate from the South of England to Switzerland which they are effectively draining by pumping millions of litres exponentially to feed the South. They are also polluting the same by dumping waste which leaches through to the water table and beyond. Water will be more valuable than gold and we privatized it and sold it off.
Southern Water were obliged to give us a rebate due to their leaks and wastage.
I see Southern Water are in the news today. Managed a turbo session today so all progressing. Just turning legs over and not much strain yet. Getting back is slow and hard and shouldn't be pushed for a week or so.18mg so far stable and no reactions so reduction ok so far.
Sewage?
Well done on your tapering.
yes. Bexhill my old stomping grounds. i remember the outflow pipes. Disgusting practice.
The North Norfolk coastline used to be absolutely disgusting.
Had my 21st birthday party in the Del La Warr Pavilion, sometime in the last century I think!!
very posh. mine was in the living room at home
Never had one! They'd just changed the age of majority to 18 when I was 18 but I was told I'd to wait to be 21, When I got to 21 I was told it was 18 now ...
your parents sound like cynics, or were they Scottish? such a mean trick
Wasn't really my parents, dad had died a few years earlier, It was his sister who seemed to regard all my doings as her business after that.
Nah, we're not posh, now or then.
Glad to hear it. mum just liked having parties and it seemed a good idea to her. friends and neighbours. remember my presents I requested, Albinoni Adagio in G Minor for Strings and Organ, Barnes Wallis biography by J. E. Morpurgo, Leonardo and the Age of the Eye by Richie Calder and a typewriter. Gave the LP to my first serious love when I parted. Still have the books. Wonderful read to this day. Made me realise how lonely Leonardo must have felt with a brain and talent so far ahead. Who could he talk to and relate to. So sad.
Were you put on a bisphosphonate? Brain fade - can't remember ...
only one not listed above was bendroflumethiazide 2.5mg which is a diuretic but has run out. Not taking it now my decision. I reduced ramipril to 2.5mg from 5 and furosemide to 40mg from 80. Swelling is less and the compression sstockings are working.. Should have latest bloods Monday for potassium which was on 3.3 last reading. Don't know sugar level which was 51 last time.
No - did they put you on alendronic acid originally?
no, they mentioned it and I refused then. Not been mentioned since. Why?
You shouldn't take bisphosphonates with well or spring water (or any bottled waters) unless the ions in it have been checked - interferes with the absorption of the drug so it is a bit pointless taking it! Must be tap water.
Well I would have said cycli’s reading are low …hospital staff didn’t like mine at those sort of levels a few years back…
Cheers everyone. It's different for everyone but in my case I have to think it's low for me. Just taken 3 readings one after the other 92/62 35-87/62 65- 98/71 61. according to charts that is on the low side of normal but heart rate is erratic. when fit resting was 51 and day normal regardless of what I did was 67/75. I'm not what I was so even when seeing what might be considered good readiongs they are not an accurate reflection of the hearts condition. This was earlier today 11am BP 80/55 87 11.10am 82/62 83. 12noon BP 86/64 66
Day4 and slightly better. Only at 50-55rpm today. seemed harder. have reduced meds. bp and heart slightly higher and okay. Before turbo98/70 61-106/78 86 After turbo 101/74 101. 11am 99/63 70. 12noon 108/75 68. Will see how the day progresses. Very hot so nothing much outside. still a bit zombylike
@
day5 disturbed night and early start so have skipped today. Will resume tomorrow.
Wishing you well cycli and hope you and the medics can sort out what’s going on ASAP 😊xx
thanks Nexoneplease. Just feeling low, useless and generally feeble at present. weather not a help and so depressing not to be getting on with anything but I guess that's the way with this at times. I'll wait till blood test wednesday and see what last results were. Usually get a gander at the screen with the very helpful nurse who chats.
Oh, I know that feeling!!! Miserable 🙁 But I bet you still do useful things like cooking? I’ve had to reduce my expectations of myself and feel good if I make us a sandwich and a cup of tea 🙄
Chin up and hope all goes well tomorrow x
day 9 feeling better so reduction in dose of ramipril, metformin, and furosemide to half their previous dose seems to be working. Hopefully potassium levels will be improved with the peeing reduction. Think the introduction of the other diuretic didn't help but that ran out yesterday and I haven't asked for any more. BP and heart rate seem much better today before bed last night 113/71 87. Going to do a turbo session, bp. before turbo 129/86 65. Did stretches to take cramp and lactic out of legs first. Still some swelling in feet, ankles and legs but very much reduced. bp after turbo100/74 pulse 73Will do my number 3 exercise afterwards to release any swelling I can before doing anything else. 11am. bp 100/76 85. Have been moving about so hr not bothering me. feel ok .bloods pm.
Glad you’re feeling better cycli 👍x
cheers took it easy given the last few days. Have edited post to show results.long way to go.
here's the list. apixaban twice daily 5mg. Ramipril 2.5mg daily(reduced from 5mg yesterday)metformin 500mg twice daily, lansoprazole 15mg daily,Bisoprolol 5mg daily(reduced from10mg yesterday)Furosemide 40mg (was 80 yesterday)Bendroflumethiazide 2.5mg plus calcium and Vit D plus 20mg pred.
day 6 was worse. Apparently my potassium level is low so they have scheduled another blood test on 17th august. Spent most of the day mooching around after very late start. Peeing most of the time but BP getting back and pulse 100/70 83. No idea really what is going on.
don#t know. Receptionist made appointment. Will ring tomorrow to get last results and discuss if possible. I think it's an imbalance in medication causing issues. thanks.
If they have been told by the doctor what information to give the patient they can.
all the foods apart from cucumber. They are daily ingredients in the food I cook and prepare. Must be the meds. which are extracting too much through excessive peeing.
Blood sugar now 51 that's why they gave me metformin to help regulate.
very interesting. thank you. potassium was 3.3 last test. waiting on results this one. just got my actilymph stockings for legs. hopefully will help. will do turbo later but need to take lambs to auction. first. Updating this as no energy yesterday. no turbo, but did one today just aerobic. bp before 123/88 70 after 105/76 72. compression leggings seem to help swelling. generally much the same. reduced yesterday to 18mg. so far ok. hopefully reduction this time will work.
they've been pumping raw sewage into the sea for years and our regulators let them. They used the profits to pay dividends and not invested it in storage facilities for excess sewage. As you say our immune systems would have been challenged.
update. Progressing well and turbo last night 2 in a day and this morning. Still only aerobic until legs feel easy. only 50 rpm and thighs feel it but heart not raising above 80 so clear indication of how much muscle lost. taper at 18mg still ok and no symptoms. another session tonight and maybe up cadence to 60rpm tomorrow. Compression stockings working well and swelling down. reduced meds also seem to be better for me. more energy but still taking it easy. Turbo today and same as yesterday so stable. taper good also at 18mg so happy. consultation this afternoon with Dr Plant, so that's good.
Update on progress.Potassium level back up to 3.6 so also positive and I think reflects reduction in diuretics. Heart and BP also back in acceptable range and stable so reduction of Ramipril seems right decision. Pulse on 85 after 20 mins turbo so shows I'm not straining it. Will increase rpm to 60 tomorrow and see. Stayed at 50 as legs felt tired .BP after 126/79 96 pulse. MRI of heart showed slight improvement in pumping. Consultation with Rheumatologist Dr. Plant was good. Going to do an MRI on leg muscles to see why the degradation so severe and if anything else going on. Taper still ok.
15 days on and even though I had to stop midway I didn't relapse or have a flare. I haven't upped cadence yet to 60 but today was 55 and I feel confident to do 2 sessions a day now. Still have swelling to contend with but it has improved. BP and pulse today pre and post turbo. 109/75 66 129/85 95. Pred. is at 18mg daily and no recurrence of symptoms. No pain. Thighs feel the effort but I am not really testing them yet. When 60 feels comfortable I'll push for 70. My rheumatologist is fully behind this program of exercise and 10% taper. With the MRI we are looking into the behaviour of my muscles and trying to understand why I seem so sensitive to muscle wastage through pred. All positive and constructive.
quick update. Fairly stable but not really doing anything serious. Turbo up to 55rpm and getting easier with some raising of heartbeat so showing that it is making me work harder. Not got any breath much or stamina to walk the dog yet so still perplexed as to where my get up and go went. Still on 18mg and feels like a slight head pressure and sensitive scalp towards the end of the day a couple of houirs before the next dose of pred. Hopefully this will stabilise or go away before I think about another drop. swollen legs,feet and ankles being controlled by meds and compression tights and improved.
Upped the cadence to 55rpm for 20 mins and still not really stressing lungs or heart. Legs feel slightly less pushed so improving very slowly. I don't expect miracles and it is very slow but given what I have lost can't expect more. Still at 18mg dose and fluid in legs less. Still stable if nothing else so good. Steady as we go I think.
today is day 23 turbo less 5 days when I couldn't do it. Slightly harder session today 55-57rpm 20 mins. Slightly out os breath last 4 mins and quads felt the ache last 10 mins so good session. bp before123/86 77pulse. immediately after 138/84 102 pulse. 1min later 114/83 91 pulse. after15mins. 112/73 86. Not too bad so happy with that. don't think 60rpm is quite doable for a few days more for the whole20 mins yet.
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