Exercise when on Pred for GCA

[susieb627]

For the last 3 years I have been increasing fitness through running and in Dec 2021 ran my first ever marathon at age 59 after months of training 😊🤷‍♀️ Then Jan I got possible GCA diagnosis and put on 60mg steroids. For a while a carried on running as it is so good for my mental health as well as anything else. However this has got harder and harder to do as I have felt iller. I am now on 30mg but feel quite unwell. I have manage some jog/ walks but those close to me are concerned I am pushing my self too much and could do more harm than good. I wonder what other people’s thoughts are and are there others on here still running with GCA and on steroids?

[PMRpro Ambassador]

I think your friends are probably right to be concerned.

Since you were able to continue running without interruption, it is probably OK PROVIDING you stick to a level where you feel OK the next day - which should always tke the form of a rest day. If you are doing an amount that leaves you feeling unwell at the time or next day - you probably need to cut back a bit.

The GCA is a serious systemic illness - what would you do if you had developed proper influenza? Most of the athletes I know would at the very least cut back the level of exercise until fully recovered. Unfortunately, GCA isn't a limited duration illness, it takes as long as it takes and the underlying autoimmune disorder is still active in the background and attacking your muscles. High dose pred is also a very powerful drug and it does affect muscles and soft tissue such as ligaments and tendons, making them more delicate.

[DorsetLady PMRGCAuk volunteer]

Maybe have a look at this, plus the replies, and related posts…or type “exercise” into search engine - and filter results to this forum -

healthunlocked.com/pmrgcauk...

[fmkkm]

Hi there,You aren’t the first person to come down with GCA when in top physical form. I was very fit, better than any other time in my life. I found there was no question of continuing my former routine after I got GCA, it was just not physically possible, I could barely push myself to the couch for a lie down. I always managed a short walk though and over time things got better.

So, you are a different person now and you need to set new goals. What is a good healing diet, what stress can you eliminate, are you getting fresh air every day, are you drinking plenty of water? Start walking a little and slowly over time it will increase.

Stick around here and learn from our resident experts.

Wishing you a healing journey 💕.

[susieb627 in reply to fmkkm]

Thank you for taking the time to reply. I do walk daily, I have a dog so he is very good motivation and company. It is all very frustrating but reading how others cope on here is helpful. Thank you again and hope your health is improving x

[nallufl24]

I was also very physically fit but when I started to have symptoms of GCA I just couldn’t do anything. I slept a lot. Once I started prednisone I pushed myself to walk everyday. At first I could walk very little and I pushed til I was walking pre diagnosis. It was very difficult because I wanted to lay in bed in front of the TV all day.I am now on 5 mg prednisone and still only just walking. I don’t have the stamina or coordination to do anything else. My legs are weak even with all the walking. I’m not going to push myself. As long as I am walking 30 minutes a day I’m just going to have to settle with that

[winfong]

I think this is a real theme. I know I was super-active - tennis, hiking, kytaking, biking, skiing. The year I came down with GCA/PMR (in June), I had already done 2 long-distance bike rides & a week-long kayak trip.

That was a couple of years ago, and I still haven't adjusted. Why, just yesterday, I did the longest bike ride in I can't remember when - 8 miles on flat ground! Aches and pains aren't bad, as I recently had to go to higher dose of pred, but I AM SO TIRED!

[squashie]

Not sure how relevant my experience will be as I only had PMR and max pred dose was 15mg. I too was very fit, daily at the gym and playing competitive squash 3 to 4 times a week.I was able to exercise at close to the same level (with careful attention to how I was feeling) for most of the time. I did suffer from several muscle tears of varying degrees, probably due to the effect of pred on muscle tissue. Now off pred for 5 months and counting, and still exercising.

Main take out I had was you need to listen to your body carefully and don't be afraid to back off when you need to.

[Devonspinner]

Hi Susie, like many others, I was 65 and very fit. An England athletics running coach. Like the others, the PMR, GCA made me feel tired as well as in considerable pain. I managed to regain my fitness whilst on prednisolone. Since then I have had breast cancer. I am back to running and leading a group of ladies but I listen to my body. My mantra is that we are not Mo Farah, we are not on a mission, we are doing this for fun !

[Towdy]

Hi Prior to PMr I was on pred for 10years for AERd & Ciu and as self employed( farmer) carried on doing a physical job with no problem

PMr hit last June( triggered by biologic??)

Bilateral pain & stiffness & if I did physical work in the afternoon it impacted 48 hours later. & I paid for it. Just finished a physical outdoor lambing season which was ok with mild stiffness that went in a crisis( adrenaline burst?)

Onn10mg pred but as I know I am adrenally insufficient is maybe an extra 4 mg of pred

I need the exercise like you and think you need to do as much as you can but watch out for delayed stiffness . Got to better for bones .

I am a very fit 60 year old

Good luck

[Nominem]

This concerns me . I do not run but following advice to try to take a reasonable amount of weight bearing exercise I walk as much as practicable. I have been on a reducing dose of prednisolone since December 2021 following a temporal arteritis diagnosis. After about 3 to 4 months of prednisolone I have started to become aware of issues skeletal issues such as a possible onset of sciatica which limits walking . I am thinking of seeking advice from a physiotherapist to see if there is anything I can do .

[PMRpro Ambassador in reply to Nominem]

Sciatica will often appear if you have myofascial pain syndrome (MPS) and it often accompanies PMR. MPS is caused by the same inflammatory substances as PMR but they are located in the fascia of the muscles (the transparent skin you will be familiar with from a joint of meat or poultry) or as hard areas of inflamed muscle fibres which can be felt as knots or trigger points in larger muscles. These can make the muscle tighten, even spasm, which pinches nearby nerves. A common one is where the sciatic nerve passes through the piriformis muscle - causing buttock pain and, if bad enough, sciatica.

cedars-sinai.org/health-lib....

spine-health.com/conditions...

[Nominem in reply to PMRpro]

Thank you for drawing this to my atttention

[Viveka]

You are still on a high dose of steroids so it would only be sensible to reduce your activity to whatever you can do comfortably at the time, bearing in mind the impact on next day. I have found that as I go down the pred levels for GCA my ability to be active increased so I expect it will be the same for you. I am now back down on 10mg and able to be active as I normally would - not in your league, but I do an hours walk or an hour pilates/yoga a day plus normal activity, with some rests. Also, I didn't realise when I started that people go down to ten relatively quickly, provided that is on their tapering plan. It slows up ten and below, but by then the impact of pred is less and you can do more.

[susieb627 in reply to Viveka]

Thank you this is encouraging 😊

[pball]

Hang in there! I was fit and on pred. for over 5 years, finally off it. Our lovely drug that we are all on I figured saved my life......it sure ate all my muscle mass. Now being off pred for 5 months the muscle mass is returning. Even going thru GCA I played tennis 3 times a week. Could hardly get off the sofa after that but just kept at it. There were many nights I was in bed at 7:00. It used to make me so angry that I could not do what I was so used to doing. Even after being off pred. for 6 months I still have days where it is hard. My Dr. said this could take up to a year for your system to so called get back to normal after being on pred so long.

[1Unknown12]

Having read your post it brought back memories of only being able to walk short distances. I remember the kind people on this forum telling me to take things slower. Shorter walks and take each day at a time. At the peak of things some exercise and lots of rest seem the only answer. If you have to work like I did. Rest when you can. It does make a difference. Take care and be kind to yourself.

[artfingers]

I feel for you! I used to be a body builder (since I was about 25 and then for 40 years, jogged 3 miles daily, kayaked, hiked, climbed, etc.) Then PMR stopped much of that though I was able to jog up until just this past May/June. Can't really body build as it makes things much worse and even physical therapy I had to really be careful and not do too much. I do still kayak no issues for some reason, ride a recline exercise bike (every other day or at a lower setting), walk short walks, and hike very small mountains in summer with big rests for 3 days or so in between. I just pray one day I'll get over this stupid disease which I've had for 7 years I think it is now and get back to normal. (I'm at 10 mg prednisone currently). Hang in there and as everyone says, listen to your body. Mixing it up helps.

[susieb627]

So sorry to hear what you have been through. It is so very frustrating x