Hello! I seem to have both PMR & GCA and was taken into hospital for three days and put on a drip to 'kill' my immune system. I've gone from 80mg steriod down to 20mg - which I'm very happy about - but I just can't get rid of this chronic fatigue. I used to run round my village for 30 minutes but there are days now that I find it difficult to walk. So my question is: how does anyone manage to get fit?
Thanks in advance
Wishing you all well
Hi And welcome, a bit more details about your reduction would help...the speed of it may well account for part of your fatigue problem....but it could also be the meds themselves.
You don’t “kill” your immune system, but the steroids do help to manage the fact that it’s gone awry...for the time being anyway.
You have to temporarily put on hold what you “could” pre illnesses and learn to build your fitness up again...and like most things in life, it takes time and patience.
Others will be along with suggestions idc....but gentle exercises are a good start....Pilates, Yoga, Tai Chi, Nordic Walking....
Not sure how much you know about PMR and GCA, but this might give you (more) some info -
healthunlocked.com/pmrgcauk...
PS - a bit more info on your profile would help...date diagnosed, reductions to date etc..
Dorset Lady, Thank you so much for taking the time to reply. Yep, I use the word 'killing' in italics a it was my way of thinking about it. I was on Methylprednisolone which sort of gives the immune system a bit of telling off! I came down from 60mg of prednisolone to 20mg in five weeks - that ended two weeks ago, so you're probably right, it's the quick reduction that may be taking its toll on me. Meanwhile, thank you for your reply. Really grateful !
Who described it as "killing" your immune system? What a strange expression to use - because that isn't what the 3-day pulse therapy with steroids does. It reduces the inflammation in GCA very quickly and it does seem to mean patients need a lower total dose of pred over time but it doesn't cure the underlying autoimmune disorder that causes the inflammation.
You have a serious systemic illness that is making your immune system attack your body because it doesn't recognise it as "self" - in much the same way that flu does. But it goes on in a chronic manner, lasting usually some years before it burns out and goes into remission for most people.. You wouldn't expect to exercise like that with flu - not much different with GCAand PMR while the autoimmune disorder is active.
The fatigue is a component of the autoimmune disorder - you meet it in almost all such illnesses. It is a question of coming to terms with changes and then learning to live well with them.
healthunlocked.com/pmrgcauk......
has some interesting and useful links about pacing and fatigue.
You can exercise but most (not all) former athletes say they manage about 70% of what they were doing previously - and, unless they were lucky and able to continue without a break, they usually need to "train" as if recovering from any other break in exercising for serious illness or injury. It does mean starting with what may seem a ridiculously low level and duration and building up with very small increases and with rest days. But it does work and people have gone from being in a wheelchair to back to their former exercise level - including one fireman who got back to half marathons and eventually back to climbing Annapurna IV last year - although that was quite a while after he was recovered and off pred.
Dear Ambassador - this is great! Thank you so much for taking the time to reply. I did look at Exercise on the PMR site but the link you sent me is much better. Yep, I use the word 'killing' as it was my way of thinking about it. I was on Methylprednisolone which sort of gives the immune system a bit of telling off! Your advise is invaluable and I've copied and pasted it into a word document as I really need to remember it all when I'm struggling. It's early days for me but I live in hope! I see I am replying to a PMR pro - how long have you had it, I wonder, and does it get a lot better? Hope so, for all our sakes. Again, many thanks
Now over 15 years, almost 16 - and been on pred for over 11 years. It does get better, you learn to live well with the limitations, but I will not compromise over dose, I take what I need but all my doctors here in northern Italy are happy enough about that and some of it is for other things which seem better at more pred. I'm also well aware that some of the so-called pred effects can also be due to PMR itself - I had plenty of time to assess that.
Fifteen years! No! You deserve a knighthood! howeve I see you mention that you're living in Italy...so you've had some life- compensation! I wish you well, PMR pro. Let us know how things go. Dare I ask how old you are?
67. Oh yes - except we bought this for skiing and that eventually had to go by the board but not really due to PMR, it plus a second knee injury made me reluctant to spend the money when there are too many tourists here 
But it is a lovely place to live and the village has everything, small supermarket, butcher, baker, PO, banks, doctors (not mine though!), chemist, pizzeria and 2 hotel restaurants plus a big supermarket that makes Sainburys look downmarket. Hospital is less than 10 mins drive in the adjacent town - usually direct train from the village to the back door of the hospital, integrated bus/train service. Can walk miles along an almost flat river. And the entire village plus associated several hamlets is 3, 500 or thereabouts. Find me that in the UK!!!
Hello there. Don’t worry your immune system has other parts to it which means that the high dose Pred doesn’t ‘kill’ it like chemo for leukaemia for example. I hardly got any illnesses while on Pred other than the odd urinary infection. Gathering from what people here say, I get the impression that the diagnosis of GCA isn’t put into context, especially in terms of what people consider to be serious. You can’t see it but suddenly there is a real risk of blindness and stroke but the medicine feels worse. The Western idea of illness is very nuts and bolts, you zap it and get back to normal; not so with autoimmune conditions. Ownership of illness is almost taboo because it has implication of blame, but I have found this is one that we have to own. GCA comes as rather a blow; it isn’t an invading organism, it is one’s body going into a state of distress and attacking itself. For many of us, used to making the body do whatever we decide it has to do, it comes as a shock that for once we have to listen to it. Aged 54 I was enjoying a career, fit and very active, enjoying extreme weather fell walking. GCA put a stop it over 48 hours. Then came a major readjustment; I could not do what kept me sane and my body no longer allowed me to do it no matter how much of a will of iron I applied. So, back to basics at a level that seemed piffling, but you get there and actually it teaches you to slow down and look out of the window. I found it essential not to push the body, especially when Pred gives the impression of having lots of energy. It wasn’t until 3.5 years later that my muscles and ligaments were able to think about being worked without complaint. This all sounds bad but actually there are many benefits, but not ones we ask for.
This is a long winded way of saying that you need to look after yourself and tick over with a gentle walk, only building up when your body can do that without complaining. Adjust your life to accommodate your illness not the other way round. It’s a pain in the rear but that’s the reality but acceptance will make it an awful lot easier.
Really well put. I may copy this and reread when I forget to respect this condition.
Dear Snazzy D - Many thanks for taking the time to reply. Hopefully you're fell -walking again. It's a shame they don't tell you how things are going to pan out when you're in hospital so I'm so grateful for this lifeline. I'm putting all my replies into a word document so that I can keep them especially as I've only been on pred for three months and have been really hoping that I can nip this in the bud in six months. Oh how I hear you laugh! It's frustrating to say the least. Like you, I was a very active person and now ...well you know, I don't have to explain. Again Snazzy, thanks
They don't know when you are in hospital - PMR writes its own rules and they may be totally different from one to another patient. And the chances any one in the hospital had ever had it is minimal ...
I have found it really difficult to adjust and get very down some times on how little I can manage. I was diagnosed with PMR last Jan/Feb and initially recovered well on the prednisone but push a little and I was flat on my back again. I have bought a cheap basic exercise bike the ones that sit on the floor and you sit on a chair (I took advice from my physio) I have just been doing 5 mins every couple of days since Christmas and for the first time since my last flare which was in August I have been able walk upstairs without stopping. Vurses Arthritis all so have some really good advice but listen to the good people on this site you have to listen to your body or this illness kicks hard. Good luck and best wishes.
Hi Hiibilly. many thanks for your comments, they are invaluable to someone who has just 'embarked' on this learning curve. So glad there are others out there who understand. I only know one other person who has experienced this disease and he went back to work fulltime, two weeks after being diagnosed which is why I've been feeling like a failure. Hope the exercise bike really gives you some strength. Chin up, keep going, I look forward to hearing how things progress.
It depends on the person and what they do. I worked all the way through PMR, even without pred (5 years) but I was a freelance translator working from home and only had to crawl from the bed to my desk, no commuting.
Yes, I see your point. My friend commuted to London from Hampshire. He was extremely fit before he got the disease whereas I'm fitter than average but no athlete. Totally understand your point in crawling...well done!
From what I have read here everyone has a different experience with this and some have other complications. I am still not sure mine is just PMR it could also be rheumatoid arthritis but gently none weight baring excercise help me feel less stiff and a little more hopefully. I was walking at least an hour everyday before PMR and 3 years ago I was at the gym with my daughter 3 times a week but my Immune system had other ideas. I love being out walking but this last year I have only pottered around a supermarket and my garden . I know that feeling and have often felt like a failure too but when I have pushed I end up struggling to get out of bed and finding everything too much. This group will tell you, you can't be a failure it is an illness and it won't be ignored or worked through, frustrating 😤 to say the least.Thank you for your kind words I will be watching your progress too with interest and hoping things improve soon.
I really must get my act together and use OH's little bike. It hadn't occured to me that just 5 mins would make that much difference - I hate bikes really
I've been using a pedal exerciser on the advice of my physiotherapist since I was hardly able to walk for ages. My son gave it to me as an early Christmas present. The first couple of times I could only use it for five minutes because of pain, then I gradually worked my way up. I was eventually trying to use it for over an hour but physio said that wasn't necessary. Now I can use it for one hour a day, but I sensibly don't do it all in one go, usually in two or three shifts. I was told to go at a rate which would, if I were walking, make it a bit hard to talk to a companion. I suppose that means you're getting a bit of cardio. But it's so easy to control and not like a walk, because when you stop you're already home! I think it's best to do a short ride at a good rate rather than a longer one when you aren't able/ready to maintain the pace.
That should say Versus Arthritis just correcting my spelling 🤗
Getting worried
Desperately getting off short term Tramadol
Getting off steroids
Difficult getting below 5mg
