A few days ago I posted about my likely diagnosis of a large vessel vasculitis (LVV-GCA), which I got after 3 months of fever and feeling really bad. Before the fever episode I have been always doing lots of sports - mainly road, gravel and mountain bike riding and running. Last spring and summer I used to cycle approx. 30 km each day and often 100 km on Sundays. I was now wondering if there is a way back.
At present and on prednisolone and RoActemra, I am happy that I don't have fever and constitutional symptoms any more but I definitely don't feel like long distance or uphill cycling - just walking 6-8 km a day is what I can do at present. I hope there are positive examples here in the community that can give me hope. Anyone got back to a level of sports as before?
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DeepThought2
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Have a look at this guy's posts. He was a firefighter when PMR struck and training for marathons and Himalyan expeditions - he ended up in a wheelchair. He climbed Annapurna IV in autumn 2019.
According to other cyclists in your position, you can get back to about 70% of your previous level. But you have to go about it slowly and carefully. Start with a ride you know you should manage easily even now by cycling say 15 mins out and back. Assess how you feel next day. If that was good, no muscle pain, add 5 mins out and back, have a rest day and assess. Do that, increasing every couple of days until you feel it next day and go back to the previous level to "train". The rest day is important and even more important is to not do so much you develop Muskelkater. Initially cycle on a fairly flat route, preferably one where you can stop and bail out easily and don't head off into the wilderness. Just in case - the fatigue can hit anywhere, anytime and it is very embarrassing if it hits somewhere you can't be rescued or it is a really hard ride home. I know - I did it skiing!!!
It sounds slow and a bit silly - but you do build up the time within a very short time without making yourself so sore or tired it takes days to recover. I would counsel knowing your limit for the day - and sticking to it! Never make the mistake of thinking "I still feel good, just one more ..." or it will bite back ...
Thanks PMRpro - the story of skinnyjonny is really encouraging. Also 70% level wouldn't be too bad 😃. As said at present I am mainly walking and just try to do short "runs" (slow and only for 5 min) on the treadmill. I have also a stationary bike which avoids getting stuck somewhere. My rheumatology consultant said also that I should start slowly and not to go above 130 heartbeats per min.
It is the building up slowly that is key - Skinnyjonny started in the hydrotherapy pool, he was lucky as he had access through the Fire Brigade. You can try anything - but start really really slow and low and be aware so you don't overdo it.
Dear DadCue, thanks a lot for your response and sorry to hear it is taking so long. But it is also encouraging to hear the Actemra makes a difference. I hope the pred tapering scheme works for me well as I have a lot of side effects - if everything works as planned I will be off in August. Keep me updated about your distance ride plans!
Dear jinasc, thank you very much for your response. Yes, the tapering scheme (if everything works well) will let me be off prednisolone August this year and then Tocilizumab will be continued. My LVV is also only a working hypothesis as there were no signs of inflammation in the vascular MRI but some (even though not totally clear signs) in the PET/CT. The competing diagnosis is an autoinflammatory syndrome, but there is even less proof.
You might have a look at some of my earlier posts DeepThought2. I'm (still) a fanatical squash player - back to 4 or 5 times a week, 2 regular pennant comps and regular tournaments. Provided you listen to your body and don't push beyond where you are at the time you should find you are able to do much of what you could pre PMR. That said, my main PMR takeout is that we are all individuals and respond individually.
I'm currently on 3mg pred, after having a flare when I tried to go from 2 to 1.5.
I'd be more worried about coming off the bike (sold mine several years ago when I realised how far I'd fall if I came off)
Thanks a lot for all your positive replies. Managed for the first time to run 10 minutes on the treadmill with reasonable speed without pushing heartbeats high. I think I can find a basis to build up from. I also feel that exercising is good for my mood especially in this new situation right after diagnosis.
Thanks for your message DT2. I have been on Pred for nearly a year now, I have had a couple of short term flares but nothing serious. I have experienced calf and foot pains and cramps, shoulder pain and had a spell of falling asleep in the chair in the afternoons. I am a keen golfer and it has not affected my ability to play a full round, and I can walk 5 to 6 miles quite comfortably. I am due to reduce to 2 mg of pred on March 1st, I started on 15mg last March end, fingers crossed I might be free and off pred around early June. My journey so far has not been difficult compared with many others. However with this condition anything can still happen, so far nothing serious for me.
As for advice, I would strongly recommend taking note of what PMRpro says, she is so very knowledgeable on the condition and we are so very lucky to have her and those like her on this forum.
Dear Gunflash - thanks a lot for your message and I am sure that you will make it off pred in June. I think my main problem at present is the 3 months-period I had fever and felt really ill preceding the diagnosis. I lost a lot of my muscle mass during that time and building up muscles needs some time (especially under prednisolone). So enjoy golfing.
I am currently on 15mg Prednisolone, am self medicating as my locum GP seems to be too busy to contact me. I arrange my own blood tests get the results and decide how much to reduce. I feel I’m walking a pretty lonely path at the moment and would have been lost without the Forum.
My only pains at present are in neck and shoulders but are not that troublesome. What I really suffer with is heartburn every day, late morning until I eat lunch. Gaviscon usually helps this.
Apart from that I’m pretty active, walking, Zoom Zumba and Ballet and a YouTube workout with Jenny Mcleland.
I have cycled in the past but never enjoyed it much, so I am a little reticent to get back on my bike. I think as you are a keen and experienced cyclist you just have to take it one step at a time and build up your strength and confidence again.
Sorry I can’t be more helpful.
All best wishes with your PMR journey, it’s different for us all.
Dear GrannyJane; thanks a lot for your reply. Fortunately I have a very responsive GP and I have even the private mobile number of my rheumatologist consultant (who is director of the rheumatology department of a University hospital). So that helps a lot and I can get every advice I need.
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