Taking Back Control of Recovery: I've had enough. I... - PMRGCAuk

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Taking Back Control of Recovery

cycli profile image

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

112 Replies

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.

cycli profile image
cycli in reply to DeepThought2

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!

cycli profile image
cycli in reply to Chicama

go for it.

I'm sure you will monitor your vital signs closely. I'm reasonably sure that staying active as much as you can will serve you better than taking it too easy. As long as you don't attempt a 500 mile bicycle ride on 20+ mg of prednisone you should be okay. That was when I first discovered a very irregular pulse and felt like I could be dead soon. Left ventricular hypertrophy was the cause of the near cardiovascular collapse. I had to take it easy when that became known. I had no way of knowing my blood pressure was in excess of 200/100 while I was asleep.

When I started to think in terms of how everything seemed to be unregulated it all made more sense to me. That HPA axis is a complex regulatory mechanism. Cortisol seems to be at the heart of everything. Prednisone was not a good substitute for cortisol in my opinion.

cycli profile image
cycli in reply to Dad2Cue

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.

JanetRosslyn profile image
JanetRosslyn in reply to cycli

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 :-)

cycli profile image
cycli in reply to JanetRosslyn

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.

JanetRosslyn profile image
JanetRosslyn in reply to cycli

Kind offer cycli but I think I'll give it a miss for now... though never say never :-) I'm in Hertfordshire.

cycli profile image
cycli in reply to JanetRosslyn

i.m coming down there soon to deal with a property. Where abouts could meet up.

Courage cycli! You can do this!

cycli profile image
cycli in reply to SheffieldJane

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.

cycli profile image
cycli in reply to Seacat30

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

Seacat30 profile image
Seacat30 in reply to cycli

It doesn't last but riding the bike is creating periods when I feel almost normal. (4.5mg FYI)

cycli profile image
cycli in reply to Seacat30

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.

Seacat30 profile image
Seacat30 in reply to cycli

Thanks for the advice. Will do my best and see where I get. Heatwave brewing down south so am forgoing afternoon walk.

Gorgeous this morning in Brighton with a sea breeze.
cycli profile image
cycli in reply to Seacat30

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

Seacat30 profile image
Seacat30 in reply to cycli

You would be more welcome on your bike these days.

cycli profile image
cycli in reply to Seacat30

agree, but in the 70's was less busy

Seacat30 profile image
Seacat30 in reply to cycli

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.

cycli profile image
cycli in reply to Seacat30

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.

Seacat30 profile image
Seacat30 in reply to cycli

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.

cycli profile image
cycli in reply to Seacat30

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

PMRpro profile image
PMRproAmbassador in reply to zoey12

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.

cycli profile image
cycli in reply to zoey12

As PMR says, I, like everyone wants to be off pred. but not sooner than I need. I'm on 20mg and have tried twice. This is the first time I have been below 22.5mg. Flared both earlier tries and had to go back up to 40 and 35mg each time.

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

Nextoneplease profile image
Nextoneplease in reply to cycli

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….

cycli profile image
cycli in reply to Nextoneplease

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?

Nextoneplease profile image
Nextoneplease in reply to cycli

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

cycli profile image
cycli in reply to Nextoneplease

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.

Nextoneplease profile image
Nextoneplease in reply to cycli

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.

True 🤔

Oh for a basement…..!

Thanks SeaCat 😊

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.

cycli profile image
cycli in reply to artfingers

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 .

PMRpro profile image
PMRproAmbassador in reply to cycli

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?

cycli profile image
cycli in reply to PMRpro

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.

PMRpro profile image
PMRproAmbassador in reply to cycli

Mmmm - with a BP like that, no wonder you are zombie-fied ...

Dad2Cue profile image
Dad2Cue in reply to cycli

"Going to reduce ramipril to 2.5mg as thinks that is contributing. also taking furosemide down to 40mg."

Your blood pressures aren't bad. I wish mine were that good. My blood pressures are borderline high sometimes and borderline low sometimes. I'm trying to convince my GP to stop the last one of my 3 blood pressure medications that I was on. She doesn't know it yet but I have already stopped the last one because of dizziness. I still get dizzy so her recommendation is to drink more water.

Hypotension, is systolic blood pressure lower than 90 or diastolic blood pressure lower than 60. If you have low blood pressure, you may feel lightheaded, weak, dizzy, or even faint. The 87/64 is the only one that is borderline low.

Low blood pressure can be caused by medications, including those prescribed for high blood pressure. Diuretics decrease circulating fluid volume. It is probably good they decreased the doses of your blood pressure medications. It is a good idea to do more frequent monitoring of your BP after any medication dose adjustments.

Resting heart rates in the 60's are normal too. When I was well conditioned, my resting pulse used to be in the high 40's. My heart rates are all over the place now because I'm not so well conditioned anymore. Same applies to my blood pressures.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Dad2Cue

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…

Dad2Cue profile image
Dad2Cue in reply to DorsetLady

I was hospital staff for many years. I might have reported the 87/64 to a doctor if it was outside the parameters set by the doctor who wanted blood pressure monitoring. I would probably have to explain my reason for reporting that blood pressure.

It was nice having a radial arterial line placed when precise arterial pressures were needed. "The radial artery is the preferred site for insertion because of low complication rates. Arterial lines are the gold standard for accurate blood pressure measurement."

One cuff reading of 87/64 wouldn't have been much of a concern.

I might have rechecked the patients cuff blood pressure an hour later if I thought it was consistently in the 80's systolic and they were symptomatic. I wouldn't have been at all concerned about the 64 diastolic pressure which is generally considered the more important number.

There are many factors to consider in regards to blood pressure. Sometimes it was necessary to have a very high blood pressure to maintain blood perfusion to all areas of the body. Trending lower or trending higher is something to consider too.

cycli profile image
cycli in reply to Dad2Cue

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

Dad2Cue profile image
Dad2Cue in reply to cycli

"According to charts that is on the low side of normal but heart rate is erratic."

Yes ... you know you better than anyone else. I'm happy you were able to consult your health care system and get their recommendations.

My personal blood pressure should be on the higher side of normal ... it has been that way all my life. That's why I'm trying to convince my GP that I don't need that last BP medication.

I see my GP's point too. My BP is above normal sometimes and that is what she sees. I see that my BP is lower than my normal most of the time. When a blood pressure is "treated" that changes everything so something else to consider.

That 35 pulse does raise a red flag. It might not be anything other than one skipped beat which can be normal but maybe not. You might want to double check a manual radial pulse instead of relying on the blood pressure machine for low pulse rates.

A manual pulse was my first clue that I had a heart problem. Skipped beats prompted an EKG being done. I was having too many skipped beats. Left ventricular hypertrophy (LVH) was revealed on the EKG along with way too many PVCs. It was a sad day for me and hard to believe.

mayoclinic.org/diseases-con...

"Occasional premature ventricular contractions in people without heart disease usually aren't a concern and likely don't need treatment."

Be careful of erratic anything when on pred. Everything seems to get unregulated -- sleep cycle, mood, cholesterol levels, blood sugar, etc, etc. I can't stress that enough.

I'm not saying it happens to everyone.

I'm not even saying what happened to me will happen to you.

Saying the converse that what didn't happen to me won't happen to you is not accurate either.

All I wish to say is that almost anything can happen depending on the person.

cycli profile image
cycli in reply to cycli

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

@

Dad2Cue profile image
Dad2Cue in reply to cycli

Are you taking any other medications besides your BP medications and prednisolone?

I can relate to feeling like a zombie on medications that suppressed my central nervous system. I was taking medications for trigeminal neuralgia.

The medications were intended to treat seizures but they are also used to treat nerve pain. The medications made me feel very sluggish. I felt like I was digging a hole that was getting deeper and deeper. I was getting worried because I wasn't certain that I would be able to get out of the hole. A bit morbid but I felt like I was slowly digging my own grave.

I stopped taking the medications for trigeminal neuralgia and stayed in bed for 24 hours. I slept all day and all night. When I woke up the following morning, I was out of the hole. I blamed the medications to treat trigeminal neuralgia for making me feel like a zombie. Sleep deprivation might have been the underlying problem.

I ended up taking prednisone for trigeminal neuralgia. My neurologist said prednisone was not used to treat it so we parted ways. I told my neurologist that I felt "more normal" if I took prednisone. Trigeminal neuralgia was very stressful if you can imagine the fear of being electrocuted. Maybe I needed prednisone to manage my stress level.

cycli profile image
cycli in reply to Dad2Cue

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.

Dad2Cue profile image
Dad2Cue in reply to cycli

I'm just curious ... how many of those medications were prescribed after prednisolone was started.

It took me a few years to acquire that many medications. I wasn't on any medications except prednisone when PMR was diagnosed.

All of your medications sound typical for someone on prednisone. My medication list was similar except I'm taking fewer medications now. Three BP medications and prednisone are off my list. I was taking ranitidine but that was taken off the market and removed from my list too.

I never imagined you taking those medications. My medications were similar except all of them were started soon after PMR was diagnosed. I was taking prednisone long before PMR was diagnosed but I never took it every day and never long term.

All my heart problems and bilateral pulmonary embolism came after PMR was diagnosed.

A couple of new medications were added last year because of kidney stones and an enlarged prostate. A urologist said I was an over achiever because I had a great follow-up visit this year. The kidney stones were gone except for one stone that was barely visible. My prostate was much smaller too. We decided to continue those medications for another year but the urologist said it would be my choice to continue them or not.

The rest of my medications are also optional in my opinion. My doctors still recommend them. I don't know why it is so easy for doctors to start a medication but they never seem to want to stop them when they are no longer needed.

As a nurse doing a health history, I always focused on the patients medication list. All I needed to do was ask the patient why they were taking this or that medication. I could pretty much get a picture of their entire health history just by reviewing their medications list.

Is your blood sugar elevated ... pre-diabetic or diabetic levels?

My HgA1c was never above the normal range while on prednisone. My endocrinologist checked my insulin level after I got off prednisone. My insulin level was very high. My endocrinologist said I should have been on metformin the entire time I was taking prednisone to possibly prevent insulin resistance. Metformin was started after I came off prednisone for weight loss and insulin resistance.

cycli profile image
cycli in reply to Dad2Cue

Blood sugar now 51 that's why they gave me metformin to help regulate.

cycli profile image
cycli in reply to cycli

day5 disturbed night and early start so have skipped today. Will resume tomorrow.

Dad2Cue profile image
Dad2Cue in reply to cycli

Good quality sleep is essential to restore good health.

Dad2Cue profile image
Dad2Cue in reply to cycli

cycli ... I am getting worried about you. I would like to see your day 6 update. Has anyone checked your potassium level lately???

cycli profile image
cycli in reply to Dad2Cue

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.

Dad2Cue profile image
Dad2Cue in reply to cycli

A low potassium level might explain it.

my.clevelandclinic.org/heal...

Furosemide 40mg (was 80 yesterday) is a diuretic that makes you pee. It isn't potassium sparing so it depletes your potassium.

Prednisolone may cause low potassium levels (hypokalemia), which may be potentiated by other drugs that also cause hypokalemia (such as diuretics).

drugs.com/tips/prednisolone...

Maybe eat a banana or two

Dad2Cue profile image
Dad2Cue in reply to cycli

What was your potassium level???

cycli profile image
cycli in reply to Dad2Cue

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.

Dad2Cue profile image
Dad2Cue in reply to cycli

Okay ... but I'm not sure a receptionist is qualified to tell you that your potassium level is low and then schedule you for a repeat lab appointment however many days later.

I'm not giving you medical advise but do you like any of the foods in the following link?

webmd.com/diet/foods-rich-i...

PMRpro profile image
PMRproAmbassador in reply to Dad2Cue

If they have been told by the doctor what information to give the patient they can.

cycli profile image
cycli in reply to Dad2Cue

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.

Nextoneplease profile image
Nextoneplease in reply to cycli

Wishing you well cycli and hope you and the medics can sort out what’s going on ASAP 😊xx

cycli profile image
cycli in reply to Nextoneplease

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.

Nextoneplease profile image
Nextoneplease in reply to cycli

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

cycli profile image
cycli in reply to Nextoneplease

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.

Nextoneplease profile image
Nextoneplease in reply to cycli

Glad you’re feeling better cycli 👍x

cycli profile image
cycli in reply to Nextoneplease

cheers took it easy given the last few days. Have edited post to show results.long way to go.

Dad2Cue profile image
Dad2Cue in reply to cycli

"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."

There are potassium sparing diuretics. I personally took spironolactone for many years without any problems. I had some edema but never that much. I just quit drinking water as much. That was one way to regulate things better but probably not the best way.

patient.info/digestive-heal....

cycli profile image
cycli in reply to Dad2Cue

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.

Seacat30 profile image
Seacat30 in reply to cycli

Too poxy hot for sustained exercise! Walking to seafront was sufficiently sweaty. Strawberry Frappe from Costa got me home again.

The Doughnut deep fried by the heatwave
PMRpro profile image
PMRproAmbassador in reply to Seacat30

Where's that? Mere 28C here - but for us it was unusually warm overnight.

Seacat30 profile image
Seacat30 in reply to PMRpro

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.

PMRpro profile image
PMRproAmbassador in reply to Seacat30

:(

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 ...

Seacat30 profile image
Seacat30 in reply to PMRpro

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.

cycli profile image
cycli in reply to Seacat30

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.

Seacat30 profile image
Seacat30 in reply to cycli

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.

cycli profile image
cycli in reply to Seacat30

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.

Seacat30 profile image
Seacat30 in reply to cycli

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?

cycli profile image
cycli in reply to Seacat30

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.

Seacat30 profile image
Seacat30 in reply to cycli

Southern Water were obliged to give us a rebate due to their leaks and wastage.

cycli profile image
cycli in reply to Seacat30

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.

Seacat30 profile image
Seacat30 in reply to cycli

Sewage?

Well done on your tapering.

cycli profile image
cycli in reply to Seacat30

yes. Bexhill my old stomping grounds. i remember the outflow pipes. Disgusting practice.

Seacat30 profile image
Seacat30 in reply to cycli

The North Norfolk coastline used to be absolutely disgusting.

cycli profile image
cycli in reply to Seacat30

true enough. not acceptable anywhere

Dad2Cue profile image
Dad2Cue in reply to cycli

I don't see many outflow pipes anymore. Farmers are criticized for all the fertilizers and pesticides they put on their fields. People who live in town aren't any better. We like putting stuff on our gardens and lawns. It all runs off into creeks, streams and rivers and generally goes down south somewhere. What doesn't run off leaches into the water table and aquifer.

I used to enjoy playing with fire when we burned our rubbish in a big oil drum. Anything that was left was hauled away by the city and taken out of town somewhere. The rubbish was then burned some more. I'm not sure that the huge landfills are any better but all the rubbish is mostly out of sight now.

Burn pits were big news during wars in the Middle East. All the wars in Europe weren't so good but better there than here ... they say.

Things are improving I would say. When I look back on things in the past, I'm amazed that I have survived this long. It's no wonder our immune systems get revved up and go into overdrive.

cycli profile image
cycli in reply to Dad2Cue

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.

Bcol profile image
Bcol in reply to cycli

Had my 21st birthday party in the Del La Warr Pavilion, sometime in the last century I think!!

cycli profile image
cycli in reply to Bcol

very posh. mine was in the living room at home :-(

PMRpro profile image
PMRproAmbassador in reply to cycli

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 ...

Bcol profile image
Bcol in reply to PMRpro

Not sure I wanted one, parents, now no longer in this world, decided.

cycli profile image
cycli in reply to PMRpro

your parents sound like cynics, or were they Scottish? such a mean trick :-)

PMRpro profile image
PMRproAmbassador in reply to cycli

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.

cycli profile image
cycli in reply to PMRpro

that's tough so early. not a happy place for you no doubt. character forming

PMRpro profile image
PMRproAmbassador in reply to cycli

May be one way to describe it!!!!!

cycli profile image
cycli in reply to PMRpro

the scars persist for life but strong characters come through.

Bcol profile image
Bcol in reply to cycli

Nah, we're not posh, now or then.

cycli profile image
cycli in reply to Bcol

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.

PMRpro profile image
PMRproAmbassador in reply to cycli

Were you put on a bisphosphonate? Brain fade - can't remember ...

cycli profile image
cycli in reply to PMRpro

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.

PMRpro profile image
PMRproAmbassador in reply to cycli

No - did they put you on alendronic acid originally?

cycli profile image
cycli in reply to PMRpro

no, they mentioned it and I refused then. Not been mentioned since. Why?

PMRpro profile image
PMRproAmbassador in reply to cycli

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.

cycli profile image
cycli in reply to PMRpro

bet they won't mention that if I ever have to take it. Probably don't even know that. I wonder if the uv filter I have will do that.

PMRpro profile image
PMRproAmbassador in reply to cycli

It does say it in the PIL I think ...

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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