Pain after prednisone reduction

[NZShez]

I was diagnosed with PMR in December 2015 and started on 20mg Prednisone. I reduced by 10% after one month, which unfortunately resulted in a relapse to my original symptoms.

I then resumed on 20mg for two months before reducing again by 1mg per month. This was on the whole successful with some short-lived breakthrough pain at each reduction.

After seeing a 'moon faced' photo of myself whilst on holiday in August, I reduced from 14mg to 10mg within the space of four weeks. This mistake resulted in a flare-up causing constant pain.

I have just increased again to 12 mg at that advice of my GP. I am now wondering how long it might take before the pain is reduced to a more acceptable level.

I have noticed an immediate increase in energy which is wonderful and don't feel as ill.

I have been asked by my Rheumatologist to consider Methatrexate as a steroid sparing agent as according to her, my reduction has overall been too slow. I was told that at 59, I am relatively young to have PMR.

[PMRpro Ambassador]

Suppose it depends on your view - I was still 51 when I started the symptoms. It wasn't for 5 years I worked out what it was! The guidelines say over 50 - and people under 50 do get it and that is accepted by some of the top experts in the UK. There are quite a few in their 50s on the forums.

What a shame you were so upset by the chubby cheeks - we've all been there but absolutely the worst thing you could have done was try to reduce so fast - but you know that.

Quite a few of us have managed to lose weight by cutting carbs drastically - I lost 36lbs and the midriff fat went relatively quickly (trousers were falling down after a couple of months!) but the fat from round my face and neck also steadily went away. Others avoided the moonface effect by cutting carbs from the start. It can be done. If you try it beware of fruit - it has a lot of sugar, albeit better for you than added sugar, but it is still carbohydrate. I eat fish, meat, cheese and eggs and loads of non-root veg and salads.

[piglette]

No wonder you had problems, reducing that fast. If you are in pain you may need to increase more until you get the inflammation under control. Carrying on with the pain will not help.

I should read up on Methotrexate to see if you feel it is the right thing for you.

The average age for PMR is around 72, on the other hand people of 92 and 52 can also have it!

[PMRpro Ambassador in reply to piglette]

Pernickety is here again: the average age FOR DIAGNOSIS is 72. I'd had it for 5 years before anyone worked out what it might be. Well, actually, that isn't true either: I worked out what it might be. A rheumy still didn't want it to be that, anything but in fact! But a GP was happy enough and all specialists I've seen since are too. That makes the data figure 5 years at least too high.

If you add in all those even younger people who I am absolutely convinced are walking around with PMR but with diagnoses of fibromyalgia, somaticism, depression etc etc then the average age would fall a lot...

[piglette in reply to PMRpro]

That is very true. On the other hand there are probably a lot of older people with it who have been told they have arthritis or are just old! They could balance out of course.

[PMRpro Ambassador in reply to piglette]

All I want is for them to admit that you can develop PMR long before 50...

[piglette in reply to PMRpro]

It would be nice. The medics get some idea stuck in their head and that is it. Like you must get down to zero pred toute suite. Who cares about the pain symptoms!

[PMRpro Ambassador in reply to piglette]

It's all in your head...

[piglette in reply to PMRpro]

Ah that's my problem!

I am reading a book called It's all in your Head by a neurologist on psychosamatic illness. She reckons thirty per cent of GP visits are undiagnosed.

[PMRpro Ambassador in reply to piglette]

That's cos it isn't in the GP's heads...

ONLY 30%???????

[HeronNS]

Personally I would have thought only being on pred for about eight months it's much too soon to think about mtx. But what do I know?

[NZShez]

Thank you all for your advice. No support groups in New Zealand that I know of. I have increased to 12 mg but still have some pain, especially early evening. I think I will stay on 12 for a couple of days. If I don't see any improvement I will increase again to 13. All advice is greatly appreciated.

[HeronNS in reply to NZShez]

It might take a few days to feel the full benefit. When dropping to 9 from 10 in the early days I went back to 10 and stayed there for a couple or three weeks. I never got back to the completely pain free euphoria of the beginning of treatment but neither have I had any of the kinds of disability (pain and loss of range of motion) PMR caused. I suppose I could have got perfectly pain free again if I'd gone higher, but some of my aches and pains were not directly PMR related - osteoarthritis in my spine being the most significant. It's a choice. I chose to not increase my total lifetime pred consumption and the trade off is what I call "niggles". But they really are just that, something I wouldn't really have noticed if I hadn't had so many months of undiagnosed full-blown PMR and now I'm probably a bit of a hypochondriac. On the other hand low level inflammation is probably not a good idea either, but apparently my ESR numbers are below what is "normal" for my age, whatever that means, so all is good!

[whitefishbay]

Sounds like I am lucky (age 58) and ONLY took 5 months to be diagnosed although I knew after a couple of months. Started at 20 mg in March and think I am doing okay at 12.5 mg - slow and steady. My lovely Rheum wants me on 10 mg and my next apt is in Oct. Let's hope I make it. Working full time and cannot deal with fatigue or pain. I get some aches and pains before the pred has kicked in and I may not sleep as well but relatively speaking I feel pretty darn good. I walk everyday (aim 10000 steps) but definitely am the fattest ever! 1 Sept d -day for no carbs...the apple shape is not flattering to middle aged women. Have to go to a wedding in a month and I will look like a moose unless the lbs start to drop. Thanks everyone for your support, humour and wise advice.

Whitefish!

[HeronNS in reply to whitefishbay]

What method are you using to taper?

[NZShez in reply to HeronNS]

I just reduce by 1mg per month. I know about the dsns, which I have pinned to my cupboard door. It all seems so slow. Maybe I need a rethink now that things have gone so wrong for me.

[PMRpro Ambassador in reply to NZShez]

If you look more closely you will see that you reduce by 1mg every 4 or 5 weeks depending on where you start - obviously it takes longer if you start at 1 day new, 7 days old dose. But start at 1 day new, 4 days old and it is much shorter and still about 1mg a month. Just your body notices less - which is the idea.

And it doesn't matter how long it takes - it isn't slower if it works and you don't cause a flare.

[NZShez in reply to PMRpro]

Thank you so much for your help. I will do that next time. I am going to stay a month on 12 mg and then taper. I feel so much better now. Less pain and more energy. Just have to stop myself doing too much while feeling better which has been my downfall and resulted in pain at the end of the day. I think lots of others on this forum have found the same.

[PMRpro Ambassador in reply to whitefishbay]

"the apple shape is not flattering to middle aged women"

No - especially the views I see here on a campsite on an Italian lake! You'd be amazed the proportion of the European population who look as if they could be on pred!

I can't look at the one or two photos of me at my daughter's wedding which coincided with me being almost at my fattest - I was on the way down by then though. And I have a lovely long coat and (greatly re-tailored) trousers that I can't face wearing because of that association. Must try harder...

[whitefishbay]

I definitely must try harder. Had a lovely holiday in Vermont and ate ice cream every day...ugh

[PMRpro Ambassador in reply to whitefishbay]

No - I can't do every day - and they have to be of a variety that are really worth it!