At sea with trying to taper

[spearce]

Unfortunately I have an atypical presentation and my diagnosis is still in doubt. After many months of misery a rheumatologist agreed to try me on 15 mg of pred. It took 8 days to make much difference, but then I felt hugely better, apart from pain in the first couple of hours each day. After 6 weeks of quite a good life, I tried reducing to 13.5, but now 10 days later I feel almost back to square 1. I'm not due to see him for 2 months and feel a lack of confidence anyway. Originally a moderator suggested I should perhaps have started on a higher dose, but where do I go from here?

[DorsetLady PMRGCAuk volunteer]

Hi,

Well, if it were me, I’d go back to 15mg to see if you feel any better. No point in staying at current dose if it’s not doing anything for symptoms.

If you cannot see specialist for 2 months then you either need to speak to his office or your own GP for further guidance.

With a doubtful diagnosis and no experience to speak of, you really shouldn’t, or be expected to make decisions on doses yourself.

I notice in your earlier post you said you were getting your life back, does that mean you have been trying to do to much. You can’t, although the Pred is controlling the inflammation caused by your illness, it is doing nothing for the illness itself. Many newbies don’t realise that at the beginning, they think once they take the tablets everything’s okay - it’s not.

Have a look at this, but I do think you need medical advice for what to do next -

healthunlocked.com/pmrgcauk...

[Broomser in reply to DorsetLady]

I am so grateful for your post. I am a newbie, with the same struggles as a lot of others are in trying to get to grips with symptoms / diagnosis / steroids / and medical advice. In fact, the problem is without a diagnosis all is up in the air. All I know for sure is the side effects of steroids are kicking in (started Feb this year and tapering (60/50/40/30/20/15/12.5/10 currently). I have been very active recently doing gardening and diy, which can be quite strenuous. I do feel I am not tolerating this exercise as well as I normally would. I see different advice on exercise, but how I feel aligns with your opinion. I am gaining a lot of weight and I have always been active. Perhaps I need to do less until we find out for sure what caused my illness.

[PMRpro Ambassador in reply to Broomser]

"I have been very active recently doing gardening and diy, which can be quite strenuous. I do feel I am not tolerating this exercise as well as I normally would. I see different advice on exercise, but how I feel aligns with your opinion. I am gaining a lot of weight and I have always been active. "

Less and very paced activity is the order of the day and weight management by drastically cutting all processed and simple carbs - we don't say NO carbs, we say only the better carbs, veggies in particular.

And some reading:

healthunlocked.com/pmrgcauk......

You need the right sort of activity - but not more than your poor ravaged body can cope with ...

[DorsetLady PMRGCAuk volunteer in reply to Broomser]

Yes you probably do. Not stop completely, but as we say pace yourself better. Do a job, have a sit down for 10, 20, 30 mins whatever it takes, then do your next job. Same with exercise - little at a time.

The underlying illness, whatever it turns out to be be, is debilitating you, and the higher amounts of steroids which may make you “feel” full of energy are also having an effect on your general well-being - there’s too much much cortisol in your body which does have a negative effect as well as positive.

Hopefully you will get a positive diagnosis soon.

[Hidden in reply to Broomser]

You have come down from 15mg in big chunks. Perhaps you have missed the dose you really need. However, you have taken on a lot of physical work. I tried gardening again yesterday. I always have a seat near me. Initially i worked 10mins, then stopped for a 10min rest. I am now at 20mins. But after 2 cycles of that I stopped (it was raining yesterday thank goodness). You have to pace. The first time I tried gardening in a block I was useless for days. I ALWAYS have a rest day between tasks.

[Soraya_PMR]

Sounds like you may have needed more than 15 at the start, therefore a drop to 13.5 is too much too soon. Go back to 15 for 3-4 weeks to stabilise, then try to get to 14.

What makes you say you’re ‘atypical’?

[PMRpro Ambassador]

Remember - at least half of us are atypical ...

Not that I would say that there is a typical PMR clinical picture - or at least it is a pick x from y symptoms set-up, no two of us are the same however much your doctors might want us to be.

You almost certainly needed a bit longer at a bit higher - and then the rest might go better.

rheumatology.org/Portals/0/...

Recommendations 2 and 3 for a start ...