Just a very random question - I have struggled for several months steroids up and down, several flares, I have put down to mainly stress. However, I do ride when I am feeling able, believing it is good for my mental state!
However, I was having a good day Tuesday, and thought I would go and have a little ride on my horse. I put my hat on and said conversationally to my daughter, oh that's nice my hat is not hurting my head today. I had a nice ride, my horse was a bit lively so there was quite a bit of movement and we trotted and cantered around the local forest area.
The next day my neck and back were really sore and the following day my temple pain returned, if not better today I was going to up steroids, but it is definitely settling. It dawned on me this morning it must be the riding, I have had no stress or trauma, and that can me the only reason.
Does anyone with PMR and most importantly GCA ride - I will be so disappointed to give it up for a while but think it would most probably be the most sensible. My Rheumy had said continue to ride, but he also said get lots of exercise and don't worry about overdoing it, getting out of breath etc .... its good for you ....so not sure I hold too much faith in his opinion.
I did reduce on the saturday, 4 days before but thought temple pain was unlikely for pred withdrawal?
I would also like to wish everyone a peaceful and healthy happy Christmas.
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lesley2015
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Prednisone reduction is a "bitch" I want to move down more but finding the pain in my hip girdle jumps to an 8 pain level. The shortness of breath just before bed time is no picnic either. just slogging along each day being different. HI HO, HI HOME it's off the prednisone I go.
That is probably because the lower dose simply isn't enough to manage the inflammation - and that is the point you know the last dose was what you were looking for: the lowest dose that manages the symptoms. You aren't reducing relentlessly to zero.
However - has it been considered the hip girdle pain could be bursitis? In which case it will respond better to local pred injections and that often allows you to achieve a lower dose of oral pred.
Riding certainly uses a lot of muscles doesn't it! Was your dx PMR or GCA? Is there any possibility that you have what I call "add-ons"? Myofascial pain syndrome can cause similar symptoms to what you describe by tensing shoulder and neck muscles and causing referred pain via local nerves being irritated, up into the scalp and top of the head - and I found certain activities made it worse (not riding though).
Hmmm - there'a rheumy who obviously doesn't know what it is like to have PMR...
It may just be the jangling about of your bones and muscles. Sometimes I can't bear my partner moving around in bed. But carry on if you can, a good mental state is vital to our recovery.
Hello Lesley2015, sorry for delayed reply and hope everyone had a great Christmas.
I really can't help much but I started pred for PMR back in May 2015 ,no GCA, when I was aged 57. Thankfully I have managed to ride my pony most days although more hacking at a walk initially and even then opening awkward gates would cause shoulders to ache after. Riding did seem to"loosen me up" though getting on and off my smallish pony was a challenge, I think it was more the add ons that made me hurt, picking out feet, tacking up etc and I didn't muck out or fill haynets.Schooling still makes me puffed, even less core strength now and after jumping tiny jumps I do feel tight across shoulders and stiff in neck but that's maybe because I'm so tense and terrified! I certainly don't have the balance or strength I used to have but would have been very sad if I couldn't manage to ride over the last 18months or so, it made me feel normal even if I couldn't do anything else that day. I don't know what to say as you certainly don't want to mess around with GCA but I really do hope you can get out for your Boxing Day hack or if not you will soon be enjoying your riding again.
Thank you for your reply- good to hear you have carried on riding. I too am now 57 and have had my own horse for over 30 years so it's very much part of my life. My daughter now does the stable chores and I just ride 2/3 times a week.
Today I rode and could feel the pressure of my hat on my temples to tweeted the position and felt it helped a bit - it usually starts to upset my head at night so keeping g fingers crossed.
I am sure you feel the loss also, I was always so active would march round the stables - rushing to do chores - I would often run to field to get the horses in š Now I pant and puff and feel I have aged by 20 years and have to constantly pace myself! š
But as all suffering with this we struggle on ever hopeful.
I was diagnosed with GCA and PMR in July 2015 and, apart from having most of the side effects to the Prednisolone during the initial high dose and a horrible flare up which lasted 6 weeks, my main problem has been muscle wastage and pain and discomfort in my upper arms. I am very active and horses have been a big part of my life since a child. I asked both my GP and the Rheumotologist if it was OK for me to ride at low level. Both were happy for me to ride and ski, which whilst I was pleased with their response I was a bit surprised given the risk factor of a likey fall and potential injury in both of these activities. My understanding of these conditions is that the immune system isn't looking after your muscles as it should and that they are more susceptible to stress, so I think it is just a matter of doing whatever exercise you feel most comfortable with. I didn't experience any discomfort from wearing my riding hat, or aching muscles afterwards, but then I only hacked out and mainly walked. I do walk every day and my target is 3 miles and when I don't feel up to riding I take my horse walking with me for the company. As you know, your horse can do just as much for your general well being by just being in their company and I am longing for the day when I am rid of these frustrating conditions and get back to enjoying life, and my horse, to the full again. I wish you, and all fellow sufferers best wishes for the new year.
"My understanding of these conditions is that the immune system isn't looking after your muscles as it should and that they are more susceptible to stress,"
Not quite. The immune system isn't working properly - and something makes it unable to recognise body tissues as "self". As a result, instead of restricting its defence activities to attacking invading bacteria and viruses, it attacks body tissues as being "foreign" which results in damage to the cells, inflammation and pain and stiffness. In the case of GCA it is definitely cells in artery walls and it is extremely likely to be in smaller blood vessel walls in PMR, although large vessels may also be involved. This results in poor blood flow along the blood vessels - because it is narrowed by the swelling. That means poor blood supply to muscles and nerves. That is partly why even without pred the PMR symptoms do improve through the day as your blood flow gets going better, particularly with gentle exercise and warmth.
I, too, skied for several years with PMR, not that I ever asked the doctor! But then, I didn't have a label at the time. I had to start with very few and short runs at the beginning of the season but by soon after xmas had got to the stage of being able to ski much more and by mid-February was about up to normal. I don't ski now but for other reasons. I just do lunch and apres-ski sitting in the sun up the mountain
Thank you so much for this detailed explanation, it really does help in attempting to underdtand these complex medical conditions. I am only 18 months into PMR and GCA and I know so much more than I did at the outset. This forum is invaluable and it makes such a difference communicating with the people who actually have the conditions and can offer first hand experience. Thank you and a very Happy New Year to you.
And I forgot to say - when you overdo things it is like asking your muscles to do a 10km race without training. Your muscles are unable to signal to you they are tired/overused and then are unable to repair the tiny tears that are what constitute "training" - so you overdo it even more and then take much much longer to recover than you are used to. You can build up - but it takes a lot longer and a lot more care.
Hi - just an update, I did ride Boxing day, and it was pretty chilly, ride was good.
However over the next two days I slowly stiffened up, today , 7 days late is the first day I am not aching. But, I do not think it is just the movement, I think i is the cold ..... my knees suffer, my face feels freezing which results in my face and head hurting.... so a combination of over doing the muscles (My horse is a fair size and needs to have a trot and canter to settle - and will spook about), and the cold.
I have spent some time with her at the stables today, and made sure I had my neck and face covered with a woolly snood.... and I have ordered some leg warmers.
I seem to pant whatever I do, walking, grooming or rugging up, but I try and pace myself.
One thing that is positive, when you are walking round with a swollen face resembling a greedy chip monk, the thought of looking ridiculous in leg warmers or balaclava time head gear, doesn't even come close!
Look up delayed onset muscle stiffness: "DOMS is caused by microtraumas in your muscle fibres that are then repaired as part of the muscle growth process"
In PMR the repair of the microtrauma is delayed - so the DOMS lasts longer. If it is really bad and you have PMR it can last for more than just a few days so do be careful.
just googled it, and the time frame seems consistent etc. Do people's muscles with PMR repair themselves or is that why they ache for longer?
I have tried to ride regularly once or twice week, (I got caught once riding two consecutive days before aching had started - then I was really bad!) but even with trying to do this reasonable frequently, I do not seem to be coping any better? Is this the inflammation in my muscles do you think. My Rheumy was keen for me to ride and push my self ......
"My Rheumy was keen for me to ride and push my self ......"
Yes, don't imagine for a moment he has PMR...
Wonder if it is the same one who told someone with a really bad vasculitis of some sort (seriously ill and it is still not identified) that basically she needed to get out more, find a hobby, riding would be ideal (this in central London) as that helped him forget his aches and pains. She just looked at him - he did have the grace to be abashed.
They do repair - but it takes far far longer. If you really overdo it they may not repair for months and remain sore.
I don't know - maybe you are just having to do too much each time. I literally went up the mountain, did 3 very short ski runs, had a hot chocolate and went home. Without the rest on the lift in between I could not do more at the beginning of the season nor could I ski on consecutive days. I remained on the short runs at the top and built up from 3 of the shortest run to 8 or 9 before I tried doing any longer stuff and always had the lift to rest, if I started to feel at all tired I stopped in a Hutte. And I had to keep warm. That meant I was only doing perhaps 5-10mins max exercise before having a similar length of rest. But when you are riding that isn't going to be very practical - you are using your leg muscles all the time even sitting and I assume the horse won't happily stand for you for that long!!!!
Pushing yourself can have the opposite effect to what you want - the muscle training doesn't work the way the rheumy obviously thinks it does. We had a long discussion on another forum about using walking aids - one lady (not with PMR) said her rheumy tried to tell her she MUST walk, use it or lose it. But because she could only walk for a few mins that effectively stopped her doing anything interesting. Using a wheelchair meant she actually did much more - there was always somewhere to rest and if necessary she could use the chair where she could and get out and walk where needed. But had she listened to the rheumy - she'd have been housebound.
that may be part of the problem then I guess, a usual ride would be a minimum of 45 mins to an hour, which as I used to ride for 2 hours or so, seems a reduction but I guess not enough. I am using my core muscles and leg muscles throughout.
I will wait a while until I feel a little better and try a shorter time, I also often (stupid when I think about it), ride when I try and reduce pred, because I am usually feeling better then so think I can do more, then don't know whether I am struggling with reduction or aching from riding.
Like all suffering on here, it is so frustrating being unable to do the things that were taken for granted before ~ I struggle with patience ............ its a learning curve but I am tryinng!
I have got back down to 10mgs, taking my hubby away for his 60th birthday to Gran Canaria next week so going to stay at 10mg (1st time I have felt brave enough to travel), until I return then will do the DSANA - I used that before so now I seemed to have settled, I will do so again.
I think at times my riding and soreness I have confused with too lower dose of steroid and I also thought I had a flare last month having face ache and temple pain and it was a tooth abscess. The dentist requested I increase while I was having treatment and I have just got back down again.
I am on Arcoxia daily and will try and cut that to every other day, I really want to reduce my intake of medication as much as I can to feel a bit more like me.
Arcoxia doesn't usually help PMR and isn't a good idea together with pred. If you are cutting anything - cut that. I manage my PMR with pred and nothing else and by reducing the potential side effects from other drugs I know where I am. And have next to no problem with pred. I can't use NSAIDs as I'm on anticoagulants so they are forbidden! It's only a problem when I have a stinking cold like last week when the headache was awful.
Enjoy your warmth - and make sure you have double or triple the amount of pred you think you need! Just in case!
If you just increase the dose briefly (up to 5-7 days) it is usually fine to go straight back down.
Thank you - the Arcoxia initially certainly helped, I had developed further unrelated PMR pain, at least thats what I think?! But will try eod then reduce further etc. and see what I feel like.
Would you recommend me increasing my dose of pred slightly before flying/holiday?
I don't except when travelling longhaul - to cover the long day. But I do request airport assistance nowadays and it is WONDERFUL! No rushing and you get to the destination feeling almost human! Don't underestimate how tiring travelling can be!
Yes - it probably wasn't PMR pain if Arcoxia works but it isn't good together with pred.
Thanks PMRpro - will certainly take all that on board- idbtvit strange I would still find asking for assistance difficult - almost on one hand it's admitting I need it on the other almost feeling a fraud?? Strange ....
I had travelled to Vancouver and back alone in May with no help and was fine. Until I got to Munich and the plane docked at the furthest gate in one direction and baggage reclaim was the furthest carousel in the other direction! In the meantime I had to stand for a short time at immigration - despite it saying it was the EU line, it wasn't - and then the wheelchairs held us up further. Munich isn't a large airport - but by the time I'd finished, I was finished! I had to wait for my bus home and the weather was DISGUSTING so no nice beer garden to relax in!
We were travelling to Calgary a few weeks later and had what was potentially a short transfer - I asked for assistance. I was so glad: we parked at Munich and then discovered how far it was from where I'd parked to the terminal (I was at the wrong end of the carpark). Then we went to the Lufthansa desk - but it was the Delta desk we needed, different level, hidden behind shops with no signs. By that stage I was ready to sit on the floor and cry - but had the silly questions to answer (you only get them with US carriers, not used to that!). But from there on - no problem! I didn't use assistance to get to the gate, it wasn't far and it wasn't busy. But at Chicago O'Hare it was bliss - met at the plane, straight through immigration with the crews, taken to the check-in for the onward flight and then through security and to the gate - with nearly 2 hours to spare! Same everywhere else. I got to Calgary feeling great - after a 20 hour day travelling that had started badly. I can do most things despite PMR - except hurry when late. PMR and stress do NOT mix - and travel/flying is stress (boring stress but still stress).
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Nearly off steroids...
Back on the horse!
Flare GCA./PMR 
Iām in need of some encouragement.
