PMR struck suddenly one morning in Nov. 1999 when I found I could not even get my socks on! 30mg Prednisone fixed it instantly but despite many attempts I have been unable to get below a maintenance dose of 4mg every morning (which I now expect will be lifelong). There are no aches and pains but I still do have fatigue which comes and goes, but you get used to a background level and carry on regardless. I rely on my yawning to reveal when I am having a flare.
I enjoy a 30 min lie down after lunch every day and as a retired old man, I go for a hard 1 hr bike ride followed by a shower every day which also helps; I am 5ft 11" and my weight is stable at 11st 6lb. A decade or more prior to PMR I got sarcoidosis for which I had to take heroic quantities of aspirin before steroids again fixed it quickly. At first the ankle pain was so great that I shuffled about the house on a tin tray because standing felt as though me feet had been cut off and I was standing on the bloody stumps!
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Flossoffa
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One thing that struck me about your Post was the term a 'Hard Bike Ride Every Day' have you ever tried an easier Bike Ride or a more Steady Ride? Just a thought........
I ride hard to stay fit rather than help the PMR but it does help. I am now 79 but have a very similar physique to what I had at age 19 when I was sprint cyclist (just three pounds heavier, all of it round the middle). Check ilovebicycling.com/cortisol...
Cortisol also known as hydrocortisone, is a steroid hormone.
It just goes to show that sometimes people do need to remain on steroids long term with a
' self limiting' condition like PMR , and , most importantly that this isn't always the horrific thing that Doctors can make it out to be.
Your 4 mg may add to your Fatigue , and it might not be the ideal you hoped for , but it is keeping you the chipper , positive fellow we can see in your post .
I love the idea of having a " Yawning Scale " by the way to work out how bad it is ( probably alot more useful than the Medical Pain Scale!!) .
You are getting a quality of Life by continuing the steroids , including the ability to take exercise in a way that you might not have achieved at Zero, and as long as your general Health is regularly monitored by your Doctor , do what works !
People get very scared of Steroids for Life , and Doctors don't help relieve that fear , but there are plenty of illnesses , including things that begin in Childhood , like asthma and excema which can involve steroid (or steroid sparer ) use for Life . In fact without it they would not potentially be alive at all!!
Lovely to hear from you and keep dropping by and telling us your news , it's lovely to read a positive story.
Like you, I tried to get off steroids in the early days but having got down to zero at one point I had to resume taking them and increased incrementally until it became clear that I needed 4mg to have a reasonable quality of life. As regards `taking care on that bike' I always say that cycling is the route to a longer life if it doesn't kill you first. A few years ago I came off and got a fractured skull and brain damage. I survived but what I call my mapping and planning memories have been damaged, a nuisance but I just have to use the computer and smartphone instead, so not really a problem these days. You may be better to start riding regularly and solve the resulting knee problem by adjusting your pred. Once you get riding hard regularly, the cortisol produced naturally may allow you to get back to your 5mg or even less. A mountain bike on tracks and paths keeps you away from cars and lorries and also produces more little challenges to help raise the cortisol. The key point about cycling hard regularly is not that it is good for PMR (I can't judge that) but it is good for the rest of the body: heart, lungs, blood lipids etc etc. Obviously `Old father Time' is going to catch up one day, but I hope to outwit him long enough to get my telegram from the King.
I've not been as low as you yet, too early on , I've got a long way to go in years and doses!
I applaud your efforts on getting back on your bike , it shows what can be achieved eventually when you get stronger . Many people in the early days of PMR or GCA worry that they won't be able to return to their favourite sports stories like yours show us the Future can be brighter .
It's even more impressive on your part after such a nasty accident.
Unfortunately , a lot of people whom loved biking prior to PMR or GCA find they can't do it , or it causes a lot of Fatigue afterwards when the Disease is still " active" , I assume you had to pace yourself more in the Early Years.
It's not necessarily the peddling itself , as actually doing a little close knit exercise on a
Gym Bike or Aquabike can help keep the muscle toned , as long as people keep within their limits.
Difficulty with cycling usually comes with the effect of the environment , or the gradient , that you cycle in , which is sad as the view flying by is one of the big reasons that people find cycling Mentally as well as Physically Therapeutic.
Having suffered with Neuralgia , and what turns out to be Fibromyalgia , over the years though , cycling has never been a sport I could enjoy , even if I wanted to , because of those environmental and temperature triggers and how they Flare up these conditions.
I also suffer from something called , " Dysautonomia/ POTS" which when Flaring causes severe exercise intolerance , as sufferers say , " Standing up is my Cardio!" .
The symptoms are are more extreme version of the Heart Rate changes on changing positions, Temperature Dysregulation , Brain and Coordination problems , and Blurred Vision that people often suffer with PMR / GCA , doing something " hard" is definitely off the agenda with people suffering with things like that .
My physio demands that people respect their limits , and , that working within your Comfort Zone and starting from a small acorn , adding a " shoot" or " leaf" slowly as your energy rises is the only way we can grow back into a " mighty oak.
It's better to do something with these symptoms that is regular and sustainable each day .
The new philosophy to exercise is never push it , because you do yourself no favours by " feeling the burn " one day then feeling " burned out " for three days after it.
It's hard to do for me though after a Life of Physical Activity when I used to swim a couple of miles three times a week and a quick walk used to be three miles .
I love to swim , and walk , and do enjoy Tai Chi , Quigong , Pilates and other activities when I can. Doing what I can , when I can , within my limits , or as I think of it , " Doing a little if what I fancy does me good!"
I'm glad you still have the " get up and go" though , you put this 48 year old to shame , but we all have our individual journeys and hearing the experience of someone like you does inspire us all to hope for what we might achieve in the future.
Wow you have more than your fair share of health problems but despite that are also keeping active. Well done.
When we consider the vast number of ‘balancing acts’ that the body performs without us being conscious of them, the remarkable thing is that we function at all! Just consider our body temperature which holds constant whether we are outside in the tropics on holiday or caught in a cold rain shower without a coat; in bed under the covers or swimming in cold water. The changes in heat loss from the body would be enormous if we did not adjust the blood supply to the skin regions and vary the fat burning etc etc. The same goes for the other automatic systems that keep us alive.
Sometimes as in our cases, things don’t quite work as they should and we become conscious of what our bodies have been doing for us despite our maltreatment of them. Fortunately, these days we have treatment that helps us get along without our broken automatic systems but just consider all those unfortunate people who had similar problems are generation or two ago! They had no help beyond being given ‘purges’ or suffering blood letting or leeches (both natural and human).
Even if we cannot manage without medication, we are actually very lucky people!
Hi Flossoffa,l am stuck on 5mg.,of pred, l did manage to go down to 3mg, but had a flare last year. l also have pulsing tinnitus ,which keeps me awake at night .You are amazing riding that bike everyday ,mine has not been out of the shed for three years .l did try and ride it then but it put too much pressure on my knees .You are doing very well for 79 years.All the best and take care on that bike !
I would be content with that maintenance dose if it kept me well and already understand about living with background fatigue. Your experience with sarcoidosis sounds horrendous. I salute your efforts towards fitness and quake at their extremity.
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