Fit 65 year old male. Routinely undertaking 1000 cal plus cardio workouts. I have struggled recently with stiffness in my legs etc. My wife noticed that my face seemed a little changed and urged me to visit the doctor. Looks like I suffered with this condition for around 6 months before I experienced a sudden and acute episode of GCA.
Long story but 90mg pred now. Symptoms for both conditions much relieved, but unable to train and if course, dealing with the effects of the drugs.
Does anyone have similar experience, in particular, how has their recovery progressed and over what time scale.
There are a few males on here with GCA and PMR, but as you are probably aware it does affect the female of the species more.
Those still with disease will be along idc, but I’m one that has lived to tell the tale as has jinasc (both GCA only) - but unfortunately many who go into remission see no need for this forum so leave, which is a shame because new patients need to know about life post their illness.
Can you put a brief resume of illness on profile - much as above, but with a little bit about dates and starting dose etc - helps us to refer back sometimes.
Sight effected but saved I hope, but very lucky as I appeared to fall into the Covid trap of telephone consultations with the “prescribing nurse”. Thankfully a doctor friend intervened.
I do intend to become a paying member over the next day or two. £15 seems a bargain!
My blurred vision developed into sixth nerve palsy (double vision - for those unfamiliar). All of a sudden could see two of my husband! Had Fresnel prism fitted on my old, wonky prescription glasses and have waited through lockdown for follow up app't. Eye clinic rang this PM and now have an app't for tomorrow. I didn't think I'd ever be so excited to visit the hospital 😂😂😂
Welcome. You will find the forum to be very helpful.
My experience is with PMR so is not directly relevant. When the UK comes on line I'm sure the experts will be able to assist.
On the much lower dosages for PMR (started at 15mg almost 2 years ago) my relief was virtually immediate. With careful management I've been able to fairly quickly resume and maintain a reasonably high level of activity, playing squash 4 times a week (when not in lockdown) averaging 8 - 10 K walking daily, and working out most mornings.
There are things you'll need to watch out for when resuming exercise. High levels of pred affect the muscles so that you become more prone to soft tissue injury, especially with any explosive movements. There is another potential problem - delayed onset muscle soreness (DOMS) This is much worse than your usual post workout aches and pains, and is slow to clear up. The watchword is build up slowly. You have to listen to your body and not try too hard to push through. That said, I've been able to maintain a high level of fitness, even having just turned 80.
You will find the experts here will have answers to most issues. They will (properly) err on the side of caution and you will have to make your own judgments.
Your illness is both serious and will not go away quickly - average duration seems to be around the 5 - 6 years - so don't try to rush things.
Thank you. You have confirmed what I thought. I exercise as I have done all of my life. It doesn’t just help me physically, but socially and mentally too, especially pre Covid, meeting male friends at the gym.
During lock down I created my own gym and also took advantage of walking. Tbh I thought that my condition was due mainly to a change in workout. I couldn’t have been more wrong.
My biggest regret though was not listening to my wife and pursuing help sooner.
Welcome. As DL has already said, mostly women here but there are some men and a few who were very "in" to their fitness regimes pre-PMR or GCA (even fewer of them). Some have been able to continue, albeit at a lower intensity, and there are some who have returned to their previous level of activity later but few of them are regulars on the forum, they are away climbing their mountains:
I do have to say that a regime of 1000 cals AND cardio workouts does seem a bit extreme - were you doing that under medical supervision to achieve weight loss? And what did your wife mean by saying your "face had changed"?
Sorry I didn’t respond fully. My wife noticed that one of my eyes, both the eye itself and surrounding tissue looked slightly different to the other. It transpired that the GCA was causing a problem with the motor function of my eye.
Sorry, I was not dieting. I have always kept fit and my work outs expend 1000 calories :-). I suppose what I am saying is has anyone else, like me, kept very fit and recovered sufficiently to return to normal exercise for them.
I gave you the link to Skinnyjonny's story. But remember John was so bad he was in a wheelchair when he was diagnosed - so continuing at the same level wasn't an option. He does credit his successful return to marathons and the Himalayas to very careful and supervised recuperation, starting with the hydrotherapy pool. That's a luxury that most of us don't have access to but a very important component is not trying to run before you can walk. If you try to force doing exercise you may well make things worse. If you have GCA then you have a serious systemic illness that is going to last an indeterminate time and you are on a heavy duty medication to reduce the risk of visual loss. If you had proper influenza how would you get back to training once you were recovering? This is a bit like that - but GCA lasts years, not months.
Thanks.No rush to get back, but I do like to train. When the gyms shut, I took the opportunity to dust down some old weights and use the 200 metre long track on a hill in our land. Slow start is good for me in the same way that I switched from long runs onto cross training some years ago. No choice but to go gently BUT last week I started 90mg pred, today I walked 5000 steps and cooked dinner. I am sure that the steroids are the magic bullet, but the wlking helped my spirit.
Just be careful - because the steroids at that dose are real "go juice" and it is very very easy to overdo it. The pred also makes soft tissue and attachments to bones delicate - they can tear more easily. And that IS a very high dose!
Hello and welcome! You’ve come to the right place for support and info. There are a few men like yourself who were super fit before succumbing and one has even gone back to mountaineering, so some hope there! I hope you’ve learned that stoicism doesn’t pay and I hope you’ll learn that powering through is the last thing you need to do for some time until you are in remission. Actually, many of us prior to diagnosis were very active and tended to do everything, be everything to all people and expected a lot of ourselves. The hardest lesson is leaning to accept it and go with the flow for a few years whilst looking after your body in the way it demands, for a few years. Many docs ‘sell’ it as over and done with in 18 months and though men tend to do better, it might be best to assume 5 years. This doesn’t mean 5 years of this right now, as most of it is at low doses.
So, for whatever reason, your body has decided to attack its own blood vessels resulting in muscles that are not able to exercise as they did for now. Pred is not a cure but your force field against the inflammation produced by the active disease which will burn out when it is ready. It stands between you and blindness, stroke, aneurysms and much pain.
Yes, high dose Pred is not for the faint hearted but it isn’t forever. The job is now to reduce to the lowest possible level that controls your symptoms, but one must not do it at a cracking pace because you need to be always just behind the wave and never get a resurgence of symptoms, what we call a flare. Some docs and or patients do it too fast because they hate Pred but this drug has been around a long time and has a proven track record. Yes, Pred has side effects aplenty and high doses can make one feel quite bizarrely over hyped yet weak, insomniac and tired (I only had 60mg!). As a previous diet controller, you should be able to cope with the super low carb diet that is needed to stop weight gain and diabetes which is often presented by docs as inevitable. Also, restrict salt to avoid fluid retention. One of the scariest thing for a fit person is seeing the effect on the muscles and you can’t go to the gym and bulk back up until you are much much lower in dose. To do so risks damage to muscles, tendons and ligaments. All I could do was keep ticking over by walking but I do wonder if I over did this because I ended up with tendon damage right at the end on sub 5mg when I was ‘supposed’ to back at the gym but found myself at the physio instead.
So, this is life changing, but not all bad and becomes easier if you accept but not give in and find patience and courage in bucket fulls. I does get better.
So, read as much as you can on this site and sit tight for more replies from those who’ve been at this game for a long time and have huge knowledge.
Hello and welcome. Thank goodness for your wife’s observational skills. She could well have saved your eyesight. It must be a shock especially coming from such a fit base. Duration is a very individual thing I am afraid. Patient acceptance seems to help. Tailoring activities to your present state of health, pacing yourself with plenty of rest. Listen to your body and taper your Prednisalone dose gradually in stages not more than 10% of your dose, once you have reached the non emergency level of dose ie 25/20 mgs. This is not a quick disease but at least we have hopes of complete remission. I won’t repeat the information you have been given, but stick with us, this is a very informative and supportive forum. Take care!
I have had Polymyalgia for about 6 years now, back 2014 I was one year away from my State Pension working as a self-employed carpenter, fixing 8ft X 4ft plasterboard sheets over my my head! Pretty fit! Then came the day I just couldn’t do it anymore, I was aching like I had flu’, and that was the end of forty years of carpentry for me! The surgery diagnosed Poly myalgia, I think I was on about 30mg per day to start with, but it took a good while for my symptoms to get under control; I remember I used to dread coughing or sneezing because of the sharp pain it caused in my chest.
I put on weight and then got rid of it successfully by walking to a pub that was further away! After a couple of years the sub-cutaneous fat started draining from the skin of my forearms, meaning that the slightest knock (which I would hardly notice) produced alarmingly large, strawberry coloured bruises and I would bleed from the slightest scratch.
For the last three or so years I have been on 20mg of Methotrexate per week (and Folic acid), prescribed as a replacement with less side effects, and gradually reducing the Prednisolone.
Five weeks ago I stopped the Prednisolone altogether and am still getting the occasional flare-ups; last weekend I was like a "Zombie" on Friday night, I could hardly move my upper body and a severe (possibly unrelated) pain in my right foot, Saturday I was fine, Sunday it was all back with a vengeance.
A blood test revealed an increase in my inflammation (CPR) levels to 40, should be around ten.
So it is not over yet.
I vented my feelings by writing a poem : -
"Poly Myalgia: The Blues"
Poly Myalgia, she ain’t no lady,
She’ll make you sweat and ache like crazy.
She starts comin’ around getting under your skin,
And what she does to your mind is a mortal sin.
She’ll sneak up on you and make you pay,
You’ll think you’ve gone ten rounds with Cassius Clay.
She’ll serve you in bed like the worst Dominatrix.
But believe me folks, this is not about sex
And then when you wake up, she makes it much, much worse.
Poly Myalgia has got you under her curse.
But the worst pain of all is when you cough or sneeze
It will bring the strongest men down to their knees.
I have PMR, so can't comment about GCA, which is more serious. From my experience (ex-triathlete), when I was diagnosed, I could not get out from bed on my own, that's how bad it was. After about 2-3weeks I started short walks, that I increased distance gradually. Few weeks later I added biking and then a bit later I added swimming. About one year later I was able to do same level of exercise as before PMR. Again it took one year and the increase was very gradual.
I am at 2.5mg at the moment, 4+ year later and just today my 90 min bike ride was ~1185cal per app that I use. It is possible, but be careful not to overdo it.
I have never been into organised sports much, indeed have been quite adhoc in terms of what I do. over the years I adapted a “wellness” training packages, mainly out of necessity whilst I was in the Army, via marathons and onto swimming at lunchtime to fit in with work later in my career. Over the past 5 years, gym membership has allowed me to refine my programme to classes such as spinning, but as I am happy to train alone, a 40 minute cross training session, 20 minutes bike and or stepper has not only giving me a cardio session but helped reduce any excess damage to my joints: cool down with light weights or a swim was great three times a week or so.
I actually thought that my chronic muscle pains were due to my change in routine, but was happy as it allowed me to get a “fix” due to gym closure. 15 times up and down a steep hill on our land, press-ups at the top, weights at the bottom and finished with circuits in the garden to achieve a similar output.
I feel very reassured by your response. Since leaving school I have been active. Not everyone can understand but you probably do, even on the days when you don’t want to train, you do it and always feel good - a natural high. I don’t always look forward to it, but I really miss it if I don’t do it.
GCA I hope will mainly be an acute phase, although I know it can return. With hindsight, I actually believe that I have been carrying PMR for a lot longer than I have recognised and not noticed the gradual, but progressive deterioration in mobility: getting older and arthritic knees taking the blame.
I am going to take my recovery slowly, a cumulative 5000 steps yesterday was a tonic. I just wish I could stop looking at the Amazon site at the cross trainer and spinning bike and working out how to accommodate them and the cars.
I have been on this journey a number of years. PMR for 6 then diagnosed with GCA nearing the end of a third year with that. I echo what many have said. Initially had to stop running and walk instead. But spaced it over the day and have maintained a minimum of 7500 steps per day most of the time. Bought a mini trampoline (6 inches off the floor) and would walk or run in place on they when weather didn’t let me be outside (live in Maine in the States with long winters!).
Would recommend learning as much as you can about both the disease and the use of Pred.
the book PMR/GCA a Survivors Guide it’s a good start. We become the experts on our disease and many times have to advocate for ourselves for the best treatment. It’s one way to channel our energy when we can’t exercise!
The condition that we have is very individual - and ability to recover also varies. YOU have to find what works for you. PMR/GCA is a form of Vasculitis, and it restricts blood supply to muscles and connecting tissue.
In order to increase blood supply, ( for me) one needs to exercise at "recovery" level ( which is 60-75% of the max effort. I find it helpful. If I go over 75% of the max, it will be for very short time and it will be preceded with long warmup and followed up with also long cool down. So in an hour session I may do interval type of training for 5-10 min in the middle of that hour. The rest of the session is at recovery level. I use HR watch/sensor to measure my effort. I hope this help. Remember this for later, as for now, try to take it really easy.
Another thing...Stay away from weights. Prednisone changes how protein is metabolized and will prevent muscle recovery. You are in danger of muscle wasting, since rebuilding part does not happen after exercise. When your dose dips below 10mg, you may revisit weights.
Forgot to say, I use a myzone Heart monitor, primarily as during fit times, I always maintained myself at 75%-85% capacity: past the time of wanting to achieve anything other than fitness. I have very much noted your suggestions and intend to develop myself back on a low and slow road. Just taken my dog for a 1 mile walk, followed by a short rest. I aim to develop over the next week to a similar walk each day and hopefully move on to a second of similar length.
I don’t often post on this site because my story is different and may upset people. I have both GCA and PMR, plus numerous other conditions now. What I would like to tell Theoldch about is my parents. They were both diagnosed with PMR in their mid 70s. My mother dutifully took her steroids and duly Fully recovered over the next two years. My super fit father fought PMR, rushed reducing his pills, carried on keeping fit, pushing himself all the time. He had several setbacks and took five years to recover, badly breaking his femur and hip along the way. Please listen to the good advice given by the very knowledgeable ambassador and volunteer on this site.
Thank you and I take yours and others sage advice. As a pragmatist, I see little point in seeking advice and not heeding it. Yesterday I walked during the course of the day 6000 steps, which at the level of pred which I am taking is the maximum I should. I took that decision based upon my physical state, but also the holistic benefit of walking along Christchurch quay in the sunshine, enjoying lunch with my lively wife and simply enjoying life 😀
All advice received with thanks and of course being male, sometimes this needs to be reinforced.
I must admit feeling very guilty when the bill arrived and I saw the discount. Sat eating lunch on the quay, in the sunshine and sipping on an ice cold alcohol free beer was wonderful and certainly something which would have been unimaginable 2 weeks ago.
Unfortunately I am now locked down pre biopsy and have been advised to expect the same next week. To be absolutely honest, the day was priceless and worth twice or more the price. As uplifting as the drugs
I only had PMR, but had been reasonable fit beforehand - Swam , plus walking and horse riding doing basic dressage, which requires a large amount of core strength and aerobic fitness. PMR floored me and wasn't diagnosed for 8 long months, but I kept up trying to walk (well, shuffle). Once on treatment I went back to the pool, but didn't do a huge amount, just kept chipping away. Kept on walking and setting myself little goals. some way through treatment I managed to sit on a horse, then to do a couple of circuits of the school.....gradually building up.
Have now been drug free for 6 years and would say that it took a good 2 - 3 years after treatment stopped for me to be anything like I was before, strength-wise. I would now consider myself fitter than before - now do weight training as well as swimming and riding, BUT I have sore muscles a lot of the time and have to keep moving or I feel I'm seizing up (and I don't think it's just the ageing process).
Seems that these diseases 'leave their mark' as one specialist remarked. I still keep up my improved diet regime too, as I don't want any more to do with either PMR or GCA! Hope you eventually, slowly but surely, in a measured way, get back to where you were pre GCA - but as everyone has said, it's not a sprint and steroids are very tricky things to come off. It's taking care of yourself, doing just enough and no more etc. I wish you every best!
Excellent stuff above. Was not fit, in so much as no regime, but walked briskly 4-5 miles daily whilst at 'sedantry' job doing 14-18 hour day for 6-7 day week over number of years. Male and just 57 at time, felt ill on Tuesday, followed by 5 weeks in hospital from following Monday, and eventually discharged - having lost over 2 stone though had been in 'overweight' BMI - with probable GCA and 60mg/day. [Eventually letter arrived later stating I did have GCA though none of original tests, including temporal biopsy, indicated GCA at the time.] Felt fine, two weeks' sick leave, and back to work - as noone had suggested pred was the great prop and I should be careful; life certainly slowed then when I hit another 'wall'. Didn't know about this forum till months later and have been avid follower since; and I sort of know what to expect now. Following second 'flare' another year later (almost 59), and work dispensing with my services, I am taking it much more steadily and am adjusting to new life (aren't we all in this covid farrago!). Stopped Pred about 2 months ago (at 3.5 year point) and slowing down methotrexate at present, but not very physically robust and the stem above full of good advice. My new GP has also reminded me about DOMS, though I didn't know. This explains a great deal about physical soreness, and perhaps linked to fact I do not feel very robust. Studying a lot more, and having had to 'downsize' quickly, have had opportunity for DIY, gardening, and long walks - all of which are helping general recovery and wellbeing. Listen to your body, and GPs have plethora of good advice that needs to be applied at your timeline - not theirs! Take it slowly and it will come right. Good luck.
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OMG cant remember if i took Pred today! 
OOOps, I took extra prednisone by mistake.
I took these supplements before I wandering if anybody in this community takes these.
I took the wrong dose of pred.
