Thankyou for all your experiences on here, your advice has helped me loads!
I was back in the gym and doing great workouts from 15mg Pred down to 8mg then onto 7mg when the last flare happened. I did the protocol recommended, added 5mg onto the last 8mg for ten days then back to 8mg. I was ok except for stiff hands and fingers early in the day. Back down to 7mg now and got hit doing a long reduction to 6mg.
Now it's spread to shoulders, knees and toes and a really tough early rising until mid-day ish. Once I get going I'm ok but stiff, especially an old knee injury. I think the knee problem has brought the flare back, as I twisted it coming down some stairs. I overcompensated after and my ankle lower down feels the pain now.
My question is do I use the flare protocol again? or do I add just 2mg gradually until I get back to feeling ok. BTW, am not doing any training at all now, the last flare scared me off.
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Lickle
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Hello, I would put my money on your flare being that you have gone past the level of Pred you need for your current level of autoimmune activity. You were diagnosed in January which in PMR terms is yesterday. It might be you need to go back to where you were comfortable and treat that as your level for a while longer than just being a pit stop. I would also back your knee problem being caught in the crossfire rather than it causing the flare. Bodies hate being asked to do something unusual in order to protect a hurting bit and payback can be on a wider scale that just the original injury. If you have inflammation sloshing about, it could feel worse than if your body was healthy.
I would definitely stop the gym and do gentle exercise only until the coast is well and truly clear. Pred can make some people feel they can do more than is good for them, especially when other Pred side effects start to reduce. You need to be cautious not to compound the Pred effects on ligaments and tendons with strenuous and repetitive exercises. Some people can withstand it more than others but sadly, it is one of those things that doesn’t always become obvious until problems occur and you are then having to rehab rather than be maintaining.
Try the flare protocol again - and maybe down to 7mg or 7.5mg - obviously lower is not cutting it. Creeping up rarely solves it…
Get things under control, and properly under control - and then 0.5mg reductions…and a slow tapering plan - DSNS or my SimpleTaper recommended -.and gently when you return to exercise -.
Remember now that you aren't relentlessly heading for zero - you are doing something called titrating the dose to find the optimum dose for YOU, NOW. In the early days of PMR the disease activity is higher and you need more pred. Over time it will fall slowly. You start on a dose of pred that is likely to be too much and then taper it slowly to find the right level. At present it is somewhere about 7 or 8mg, when you go too low the inflammation builds up again and you have a flare. Beware of trying to push to get it lower - you may end up finding each flare harder to get under control and needing more pred, not less. You will get lower over time - just not yet, Give it a couple of months and try again - but never let a flare get established, go back quickly, wait a month or so and try another 1/2mg.
There are all sorts of things that will interfere with a taper - injury, illness, stress of all sorts. So don't get in a panic when it hasn't worked - just be patient.
Thanks PMR Pro. I've sort of come to that conclusion. I've upped my dose to 9mg yesterday and it has made a big difference almost immediately. Titrating is an interesting new word to add to my collection. If I stay ok at this level I'll stick with it a while until I get my general fitness back.
I'm having a series of tests with gastroenterology over the next couple of weeks, had a CT Scan yesterday. My blood tests over the past year have shown me as anaemic and I'm not showing any other symptoms, so my GP wants to know what's going on. Maybe that is what is behind all this.
Er - it is called the anaemia of chronic illness. It is a common sign in PMR and a lot of other chronic inflammatory disorders. The GP should be aware of that - and the treatment is treatment of the illness.
And a warning - don't expect to get back to your previous fitness and don't go hell for leather at it. Pred isn't a free pass to go back to pre-PMR activity - you have to do your part too and make lifestyle adjustments to accommodate PMR. Don't abuse it - it will always bite back and then you will be here asking why you have this massive flare and loads of pain!
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