Not a new member - just a silent one!

[csy50]

Looking forward to participating more in the coming year. PMR and GCA have been tracking me for quite a while. Now on a low dose (5mg) of prednisolone but reducing further is not easy despite super slow reduction plan. I will hang in there and be patient although this was never my strong point !

[PMRpro Ambassador]

Remember you are not reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms as well as the starting dose did. As long as the underlying autoimmune cause of the symptoms is active you will need some pred - and the lower you get the closer you are getting to that level! 5mg is a very low dose and I have just said to someone else: one of the best PMR specialists we know likes to keep his patients at 5mg for some months - he finds it helps smooth the onward downward path having given your body a chance to catch up with itself in terms of the adrenal function stakes.

As I keep saying - if you don't learn much else with PMR, you will learn patience!!!

[DorsetLady PMRGCAuk volunteer]

Hi,

I found reducing from 6mg down to 3mg very difficult, despite slow taper and only going in 0.5mg steps. Very lazy adrenals didn't help either. But as you rightly say it is a low dose, so isn't causing much in the side effect line, so just keep plodding on gently.

I found once I'd got below 3mg there was a definite change in things generally, felt so much better all round.

So if you have stay at 5mg a bit longer than you'd wanted to, does it really matter? Not in the great scheme of things - you've worked hard to get where you are, so don't spoil it by trying to rush now!

Patience does have it's place! Like you, not my strongest point!

[csy50 in reply to DorsetLady]

Thank you Dorset lady - you are absolutely right and these are wise words that I have suggested to others yet find hard to do myself! I will take heed and be patient!

[Whittlesey in reply to DorsetLady]

Sounds really good dorsett lady. I am at 2 ngs/ medrol with GCA and PMR.

Two is good, glad to be there. I, however, have much fatigue.

Dealing w back and thigh problems. A lot of pain.

The 2 is good, but the fatique --- more than I thought it would be.

Blood tests still show a high c reactive protein, normal ESR ( ESR normal throughout the GCA problem).

Glad you're doing well Dorsett Lady. Prayers for its continuance. and more power to you!

All my best, Whittlesey

[DorsetLady PMRGCAuk volunteer in reply to Whittlesey]

Yes I found the fatigue the worse, but it does go eventually. If it stays much longer might be worth enquiringly about a Synacthen test to check if your adrenal are actually capable of working, and are only being lazy.

I have back ache as well, left side only, and finally tried a Bowen therapy session on Thursday, it certainly feels freer, but sure I will need more work on it. The lady I saw also does Manual Lymphatic drainage as well, and maintains lots of pain is caused by our lymphatic systems not working properly, which can be hampered by the tablets we all take. If I find it works I'll let you know.

Take care.

[PMRpro Ambassador in reply to DorsetLady]

Just one session of manual lymphatic drainage worked a minor miracle for me! The puffy feet and ankles went within days - and he only worked on one leg, the worse one, to start with. Was honest enough to say I should wait and see if I needed another session!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Mine was mainly on legs, both knees slightly swollen at back, ankles fine. Swelling has decreased, next time she's going to have a go at my head and chest - not that I have any particular problem there. She definitely seems to think that back problem is not musculoskeletal, so it must come from somewhere.

I feel now that I'm off Pred and have time to think about other things I need to consider getting myself fitter, and hopefully able to walk farther than I can at the moment.

We shall see!

[altywhite in reply to DorsetLady]

Hi DorsetLady, I read your and PMRpro's comments about lymphatic drainage with interest. Early last year boith my ankles swelled badly. I thought it may be due to the pred, saw my gp and was offered very little advice except that she didn't think it was cardiac! So I rested with my feet up, did ankle exercises and applied lotion in gentle uoward movements as I had been taught by the MacMillan nurses when looking after my mum. It took a few weeks but eventually I got my ankles back. Its funny it hasn't come back at all although my skin feels 'tight' sometimes. I learn somnething new about GCA/PMR every week.......but learnt about patience very quickly after finding this group. That was the best...I am now down to 9.5mg using the dead slow method.

[DorsetLady PMRGCAuk volunteer in reply to altywhite]

Well done on your reductions.

Trouble with most medical people is they look at the illness rather than the person, way they're taught I guess. But sometimes the holistic way of looking at the body comes up with some good remedies, and if you're in pain, then why not try different things.

[Celtic PMRGCAuk volunteer]

Hello, csy50 - I recognise that face! What a lovely surprise to hear from you and what a lovely photo.

You've done so well to get to 5mg after the frustrating time you've had, especially in the early days. However, like you, I remember well how difficult I once found it to get below the oft sticky 5mg stage.

I assume by "super slow reduction plan", you are trying just half mg reductions and tapering slowly to each new dose over many weeks, ie new dose on one day followed by old dose for 6 days, then new dose on two days followed by old dose for 5 days etc, or similar. Slower than a tortoise but it proved successful for me all the way to zero Pred, and I was under "one of the best PMR specialists" as described by PMRpro who kept me at 5mg for some 5-6 months following earlier flares when trying to get below this level. If you are well at 5mg but haven't tried 'resting' there for several months, then please do try it and, fingers crossed, it will work for you, too.

[polkadotcom]

Well, welcome, old friend! See you on here in the future, hopefully.