I've been here a while and wish all a Happy Christmas and New Year

[GCA1947]

I've been here a while but don't post much. I really feel for the poor souls who suffer from PMR as well as GCA, because I've only had GCA for three years and am now finally reducing my Prednisolone helped by my Rheumatologist. Come down 1 mg per month for past three months and am now at 7 mg. Watching out for anything different I developed pustules just above ankle on my left leg yesterday. The Nurse Practitioner lanced the biggest one and then covered leg from base of toes to below knee with bandage. Leg looked considerably better at my visit this morning but one was still weeping. Another bandage and I'm to return next Tuesday.

[DorsetLady PMRGCAuk volunteer]

Hi,

Hope leg not painful. Might be idea to resist reducing again until it's cleared up completely - no point in rocking the boat!

[GCA1947 in reply to DorsetLady]

Dear DorsetLady,

I always read the digest each day and had seen that several postees had mentioned stopping at 7 mg so as I'm seeing my Rheumatologist on 21/12/16 I will ask him about staying on 7 mgs for a bit longer. I have been extremely lucky other than the fearsome headache to start with for 35-days nonstop, my GP swearing I'd got Neuralgia it wasn't until my dear wife produced her bottle of Oramorph (Morphine sulphate) supplied by Nuffield Health Hospital after the extraction of 5 of her teeth, that my GP said yes you can have some of that. Then the three G.P.'s in the practice fell over themselves to keep my stocks of morphine topped up. It reduced the headache but didn't make it go away which is why I got referred to a Neurologist at Nuffield and she took one look at me and said you've got G.C.A.

I look forward to your posts you always have such practical suggestions. I hope you have a very happy Christmas and New Year, and no there is no pain in my leg.

All the pain is in the recovering fractured spine and osteoporosis

Regards

Colin

[DorsetLady PMRGCAuk volunteer in reply to GCA1947]

Hi

Might get be an idea to stay at 7mg for a little while longer, it's a difficult dose because your own adrenals have to start kicking back in around then, and sometimes they need time and a bit of extra help to do that. Particularly for those of us with GCA and obviously high doses at the beginning.

I stayed on 7mg for longer than normal, not because of the adrenals, but because I was away visiting my daughter in NZ and thought it sensible not to reduce whilst I was away. Didn't do me any harm, and may have done me good I don't know!

However I found once I got below 6mg life became more difficult - fatigue wise, no GCA symptoms so I dropped by 0.5mg a time which seemed to help.

Once you get down to that sort of level, you are past most of the nasty side effects, so my view was take it easy and don't risk any flares.

Good luck

[PMRpro Ambassador]

A good place to hang around is 5mg - that is just below the place at which your body has to start to make cortisol again but sufficiently below it to encourage the process without putting you at too much risk of shortages in the meantime. One top PMR specialist likes to keep his patients there for up to 9 months - and it really seems to make the rest of the journey easier.

[GCA1947 in reply to PMRpro]

Dear PMRpro

This is just what I mean, there are so many knowledgeable people on this forum I so wish I'd found it when first diagnosed. Few of the Doctor's in my experience know much about G.C.A. the Hospital consultant who dropped me 20 mgs without doing a blood test first, and then several drops of 10 mgs again with out doing any blood tests. My G.P. though a wow as far as eye care is concerned, who kept increasing my Prednisolone based on CRP readings and finally after 2.5 years referred me to a Rhuematologist who's guiding me downwards.

You will be pleased to hear I've bought a medic alert bracelet using your recommended website and my particulars will be updated whenever there's a change. I feel so much happier now I've done that, and will always be eternally grateful for your input.

Regards and a Happy Christmas

Colin