Context : I’m 64 and have a share in a pony to ride and look after one day a week. It was 2 days a week but last September I started a series of serious chest infections (6 courses of antibiotics) and was struggling with fatigue and weakness. In January PMR began (though not diagnosed and treated till March). In addition to the weakness, fatigue and pain the brain fog made me nervous about the ½ hour drive each way to the stables. The ‘looking after’ part involves grooming, mucking out, haynets etc.
I am feeling much better now (mostly) , have tapered down from 20 Pred to 13, the sudden brain fog is more infrequent but I’m still nervous about driving (especially on the way back when tired ) and currently could do little more than giving the pony cuddles, a light brush and a short walk. His owner has been very understanding but each week I feel guilty and frustrated about not managing to get up there. Pony sharing and looking after my granddaughter were the highlights of my life - the latter also severely constrained now.
I keep hoping I’ll wake up feeling well enough to continue my favourite things. (Perhaps I might if I kept on higher steroids.. but I have to lose this extra 2.5 stone somehow.) I’ve read about the average of 4.9(?) years for PMR to last but is that the length of time on steroids and/or getting back to fitness? I read here about people running etc, but I was weak before the onset of PMR. I’m doing Pilates and I’m improving to the extent I can now complete the whole hour with the slowest class.
Question: Can I realistically expect to get to a ‘normal’ level of fitness whilst tapering? I appreciate it’ll vary hugely person to person. I don’t like feeling I’m letting someone down all the time, nor does it makes sense to continue contributing to the upkeep of a pony I’ve seen once in the last four months (though money’s not the main consideration) Should I accept it’s just not practical or keep hoping it will be soon?
I really value the quality of advice from this forum.
Thank you
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Enfin
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PMRpro posted this elsewhere and I found it helpful. It’s about pacing as a strategy for dealing with the limitations our disease puts on us. Try to remember that even though the pain may be controlled, you still have the underlying disease until (hopefully) you go into remission. That means you need to take it slow and make that your new normal. And hope that your family and friends can understand and help you when you need it!
Enfin - I so empathise with you. I am fairly new to this pmr/gca condition and to the Forum. The Forum is absolutely brilliant. I haven’t responded to anyone yet as I feel others have so much more knowledge and experience re the condition (s).
However, as I do have background clinical/physiological knowledge I feel I can offer some comments although they are probably not what you want to hear.
I am 82 and (although I say it myself) look about late 60’s. I have led a very active, healthy life up until now when I find I have to pace myself constantly. I hate this and I feel, at times, quite useless - which of course leads to frustration.
You will read often in the posts from members here that “everyone is different” or “you have to listen to your own body”. In other words we all require different dosages of prednisolone, different tapering dosages and we all have days of feeling varying degrees of exhaustion.
The first hurdle - and one which I think I am overcoming (very slowly and reluctantly) is to accept that you have an illness and that for however long it takes you have to bow to the limitations it puts upon you.
One thing you must not do is force the issue. Physiologically your muscle system is so much less robust than it once was and muscle fibres can be damaged if excessive physical forces are forced upon these weakened structures. This can lead to all sorts of problems - painful joints and muscles, tendon strain etc etc. And perhaps worst of all can trigger a flare of the pmr/gca.
You are down to 13mg pred at the moment (wish I was!). Cut out the sugar and go easy on the carbs and live and enjoy life within the present constraints. I have had to give up my beloved golf (for the moment!!). NB “for the moment”
The median duration of taking pred for PMR is estimated from a study as 5.9 years - about 1 in 5 are off pred in well under 2 years, and a third in about 2 years. Everyone is different - there are people on the forum who are able to ride some, others who have had to give up entirely. As has been said, you have to find your level and can't look at others to see what you can do.
Cutting carbs drastically WILL help with the weight problem - others will tell their stories, I can only say I lost 35lbs while still on 10-15mg/day. It won't be immediate or fast, but it will help. And pacing, reducing the things you don't have to do and doing the things you LIKE to do will also make a difference.
Agree that cutting carbs to 20g a day should help enormously re weight. I have lost 3st as I reduced from 15mg to 6mg. Fewer sugar spikes may stop some fogginess too.
Which does you more good....spending time with grandchild and/or pony or doing Pilates? Plus (probably) the jobs around the house you probably feel you NEED to do. Ignore the dust. If you can afford to buy in one day a week heavy pony care do that- or offer to buy some of your pony partners food bill. On the other day do the journey in 2x 15min chunks, I have been known to recline the seat and close my eyes for 10mins in a car park bay. You usually feel much better for it just do what you can with the pony. How old is your granddaughter? Is she old enough to go with you? Two birds, one stone.
Pacing is hard to do sometimes because it starts in the head. It may be you can only do 10% of your old life at the moment. Pointless feeling guilty as you haven't done it on purpose- if your friend had a serious illness would you be narked at them? If you do 10% today and 11% tomorrow be happy. If you slip to 9% the day after think I might have an 11% day the next day. It is about being positive and enjoying the little things and not beating yourself up when you feel tired. I hope you can cut yourself some slack. 🌻
Hello Enfin, started Pred May2015, been lucky and gradually increasing exercise. Strength and stamina much improved this year. I continued to ride (at a lower level) - pony kept at livery a short drive away so no add ons of mucking out/poo picking etc which would have likely exhausted me too much, sometimes just lunged her or rode bareback as couldn’t lift saddle onto her fairly low back....Truthfully in retrospect I’m not convinced riding helped me physically in the first few months but I would have been desperately sad to have given it up. Mentally there’s a lot to be said for pony cuddles and I can sympathise with your dilemma. Would it be possible to arrange to get a lift to the stables sometimes? you are still early on and above 10mg of prednisolone daily, concentrating on driving used to wipe me out. Sorry no advice but understand wanting to feel normal and able to do the things that make you happy. I’ve become very selfish (I know many here don’t have that luxury) and prioritise the things I like or absolutely have to do, rather things I feel I ought to do ( like most housework)
It does get better as time goes on honestly. All the best x
Have a look at this - hopefully a realistic look at what you can expect.
Life will be different from pre illness, not necessary worse, just different. If you accept that you can have a reasonable life - and don’t judge yourself on other people - if they are active during PMR, they probably were pre diagnosis. Concentrate on what you can do, not on what you can’t!
Hi, my experience has been to take one day at a time. Oh there is nothing like a horse!
So that I don't get stepped on though, I have changed my sport to kayaking, and the necessary arm strength comes and goes. Some days I can, then the next day I can't. For instance, two days ago I paddled without incident, since then I have been unable to lift my right arm up. So I stop and listen and try to figure it out. Added 1 mg Pred in case it is inflammation. Taking a light pain killer to see if I strained something. Thank God I have time to rest. All the best!
I am not giving advice, but will give my experience. I am 91 years of age (look younger) and was diagnosed last December, but think I had it for quite a while before then, but put my declining capabilities down to aging .I was given 40mg for three days then 20mg. I have now, on my own, tapered to 4.5mg. I do not put all my aches and pains down to PMR. I do have osteoarthritis. My main effort is working on my attitude. I will not let this disease become me. I continue to drive, very carefully, but will not let myself get into the thought that I cannot do it. (Some of my "elderly" friends do, so I drive them) This morning, early because temperature is to go to 100F, I took Lily to park, she ran and I walked. We were there for an hour. I sat for about 5-10 minutes of that time. The rest of the day, I will do some chores, but rest a little, because my daughter and I are going to an evening event for a couple of hours. While there I will drink a glass of wine and eat some sort of food. I think it is very, very important to remain engaged with other people.
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