Hello - I am tapering pred and down to 6mgs currently. Have just changed from a split dose to a single 8am dose and find mornings stiff and sore arms but manageable. I'm hoping in a week or so it will settle down so that I can reduce to 5.5 mgs. My question is regarding exercise - I was very active and now just do a daily dog walk for around 1/2 hour (to help my bones) and gentle yoga a couple of times a week (literally stretching, no arm work). I would love to do more but am scared of having a flare, especially while I'm trying to taper. My upper body strength is poor, arms feel weak and so would love to build that strength back up by doing more strenuous yoga or weights. Should I just try and see or be patient and be satisfied with where I am currently?
Struggling to find the right activity balance - PMRGCAuk
Struggling to find the right activity balance
Bearing in mind
1. You’ve just reduced
2. You’ve changed your dose time
3. You’re entering the adrenal zone
I’d be inclined to not change anything else or you won’t know where you are or what is causing any symptoms.
I did a recent switch to 8am dosing, couldn’t cope with bad mornings so after 5 days went back to bedtime.
Thanks Soraya - I used to take the main dose at 8am and a smaller dose at 8pm but it seemed as the dose was going down, it made sense to take it once a day. I'm hoping my body will get used to it soon. Yes, maybe wait it out - I miss exercise so much but at least I have no problem walking.
If the antiinflammatory effect lasts well under the 24 hours for you it is likely that if a split dose worked then there may be problems with the same amount but as one dose. Nothing has changed there.
Hi
As Soraya says a lot of changes going on, so stick to the regime that suits you.
You could try adding in a session of Pilates - which may help build up your strength - but walking is as good as anything at the moment. Just need to take things gently, but things will and do improve.
Hi DorsetLady - that might be a plan, I haven't tried Pilates before but I think the yoga studio I attend run a few classes.
See if you can get a taster lesson - and see if it’s for you.
But start Pilates at a VERY low level - even the rugby players in my class struggled at first if they tried to do too much.
That’s why I suggested a taster session - then instructor can gauge fitness level.
Not just fitness - ability and training in the Pilates context matters for quite a time and some days you may be able to do level 3 - but on another even 2 is too much!
I know. I found it quite difficult to start with - and I was down to 4mg - but best part of 5 years pre and during GCA with little or no exercise!
That’s why I always recommend going to a studio class (where you can be assessed at a one-off session) and not one that's held for all abilities at the local village hall!
I went to a class at a gym - but we had a fantastic teacher! Managed the individual care bit even with 20+ of us.
Using the stairs would help, too!
I include the stairs as my steps on bad days.
I am at 6mg and have been happy to stay on it since sept. I have tried twice to reduce just to see really and both times by the time a week went by I could feel the niggles coming back, especially the fatigue. Rheumy says most people he treats struggle at the 6 to 5mg drop. I saw him yesterday and was advised to just stay here at 6mg to make sure all controlled.
Do the niggles improve with OTC pain killers? If not with morning pain and stiffness I would stay at 6mg. I considered splitting dose but wanted to have the middle 4 hours of the day as strong as possible once morning pred kicks in. I stretch my body every morning for an hour before breakfast in bed. It does sound like a fire spitting but I get through it. I try and do very gentle arm stretches and (not for some!) I raise arms as much as I can by my side sitting or standing and do a few tiny circular mvts. If it "burns" I immediately stop. I do biceps curls without weights but do them laid on my back with a stretch band. I also bend my legs with it. I do as many reps as I feel able and the next day I rest as much as I can apart from dog etc. It all helps me.
Thank you - yes thinking I'll stick at 6mg for a few weeks as I can really feel the pred wearing off at the moment. My GP rolled her eyes when I suggested trying the dead slow tapering so have been trying 0.5mg every two weeks as she suggested, fingers crossed!
With PMR/GCA she might not have the strength to roll her eyes on a fast taper.
She thinks that's slow - originally had me down 1mg per month but after I got below 10mg I started to feel very unwell. Unfortunately the two GPs I have seen since being diagnosed with PMR have not been very patient - just want me off pred asap.
Mine was the same until at 8mg (the first time) my markers were higher than at diagnosis. Even 0.5mg drops a month were unmanageable physically from 12 to 8mg but I was driven on by gp and ended worse than at the beginning. Been at Rheumy since then. Dr only prescribes. They don't interfere. Lol
Not their pain - and I would remind them of that. PMR doesn't just go away in a puff of smoke - it lasts years.
Hi, to get ahead of the cytokines released by our bodies at 4am, I have always taken my dose at 2am and felt just fine. Then I decided to take my dose at bedtime, but on came morning stiffness and great pain.
After 10 days, I went back to 2am dosage and am back to my old self, as well as toggling 3.5 mgs on DorsetLady's taper method. All the best!
I had a similar response on plain pred. It seemed to miss the boat entirely. I now take coated pred at bedtime as I know it takes me 4+ hours to get it in my system.
If you’re keen to get a full night’s sleep then GP might prescribe coated? Sleep is important for all, and particularly for us who are plagued by fatigue. (And might want to lose weight) I think it’s a reasonable request if your GP can think holistically?
Hi, so far I can go right back to sleep. I am a very good sleeper. I even nap before bedtime!!
But seriously, will talk to my rheumie next week about coated. Thank you!
Hi Diane, do you get up at 2am to eat something and take your pred?
Yes, I awake to take my dose at 2am and have a little container of unsweetened applesauce with it.
My arm muscles are weaker, like yours, and I have 2 lb weights that I lift, very slowly, every day because the few times lately that I have taken a tumble, it is my arms that have saved me.
Providing you start VERY low and build up VERY slowly you can do more - always have a rest day between to check there are no adverse effects and add a bit more if you are. But training with PMR means starting with just a few minutes at a very low level and with just a set of 5 with no reps with a few ounces of weights. I suggest using water bottles with 50mls water and adding say 10mls at a time, maybe once a week.
But as Soraya says, only change one thing at a time. That includes everything.
Thank you PMRPro - very good advice. I do have a tendency to want to just get on with it but too scared to risk a flare as I taper down now.
No one has mentioned swimming, which has been a huge help to me psychologically as well as physically, though I realise it isn't foreveryone.
Hi - thank you, I do swim from time to time because its relaxing but find I'm not a very good swimmer (more like a broken frog doing breast stroke!) so don't get as much benefit from it. I also have Osteopenia and GP suggested weight bearing exercise rather than swimming to increase bone density. I can understand why it would help psychologically as you are exercising without pain or pressure.
You can do aquarobics(??) to build strength with the water for support and then build it up.
That is a very good idea and I think our local pool have a weekly session, will look into it......thank you
I kept mobile for the 5 years I had PMR without pred by a daily aquafit class at my gym, the earlier in the day it was, the better the rest of the day was. I couldn't swim, neck didn't allow breaststroke and crawl was out of the question. Backstroke was OK - gym didn't like people swimming on their back in case they bumped into others. Aquafit was great though - providing the pool was warm, I got out again if it wasn't. It was even enough to mobilise enough to do a Pilates or a Iyengha yoga class. Steam room was magic too.
Thank you, so helpful. I feel much more positive and am taking a trial pilates class next week and will find out when aquafit class is also. I do find if I am active I feel better but it's not easy getting the balance right as if I do too much it takes several days to recover.
That is what you have to learn - you start at a very low level and add on slowly until you get to a stage where you just notice it next day and then row back to the last level - just like tapering really! At first I never did classes on consecutive days, Mon, Wed and Fri for a few months before adding in the other days but I also dropped the level a bit at the same time.
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