STRUGGLING AGAIN!

After a flare 4 months ago (GCA) I have been very careful with trying to keep a happy medium with the steroids. I have been on 10mg now for 4 months but recently had a bad chest infection & was given penicillin by GP. The last few days I have felt unbalanced & tender around my scalp/left ear & then last night the full blown headache came back. I have increased my Pred this morning to 12mg & already the pain is subsiding. However, I am suffering with an attack of "The Dismals" as the steroids seem to give me every side effect possible! my GP is very understanding & is happy for me to increase as necessary but how long should I stay on this higher dose & should I start reducing by the slowly, slowly method?

I am 20 months since diagnosis & sometimes I must admit that I do feel it will never get better.

Sorry to moan, just feeling down.

9 Replies

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  • Hi theresa49,

    I should stay on the higher dose until you feel things have settled down! And then start reducing by 1 mg stages, even down to 0.5mg reductions once you get to 10mgs. I know it sound tedious, but slowly is the best way, I have found out after a couple of flares. Some people can reduce overnight, but I find you can fool the body if you go really slowly by taking a few weeks to get completely from the higher to the lower dose. Once you are on the new dose so long as you feel ok, then you can start the whole procedure over again. It doesn't take much longer in the scheme of things, and to my mind if it stops the yo -yoing up and down to deal with flares then all the better.

    Might be an idea to run it past your GP, but whatever is best for you must be good! DorsetLady

  • I know it maybe doesn't feel it, but to be at 10mg just 20 months after diagnosis of GCA is really very good!

    This link is for a paper written by top experts:

    rcpe.ac.uk/sites/default/fi... (this is a paper by the Bristol group which is aimed at GPs to help them diagnose and treat PMR and GCA more confidently and using a scheme that results in fewer flares due to reducing the pred dose too fast or too far, which is the primary cause of flares).

    They take 5 months to get from the high starting dose to 20mg and a further 3 months to reach 10mg - where they keep you for a year!

    If the symptoms were "full-blown" as you put it - is 12mg enough to really crack down on the inflammation? It is a false economy to try to economise on the pred dose - the main cause of flares in reducing too far or too fast for the state of the disease at the time. Once they get established you may be back to a much higher dose if you are too cautious. Using 20mg for a week or so doesn't mean you have to crawl down to 10mg again - unless of course you tried to get there too fast the last time and that let the flare in. Though it was probably the chest infection and abx - you should probably have increased the pred then.

  • Thank you both for your advice. I have read the paper suggested & taken on board the information regarding the dosage in GCA. This morning the symptoms have lessened somewhat although the side of my head is still tender, so I think I will increase the dose to crack down on this inflammation again. Sometimes I find this illness so lonely as I don't know anyone in my locality with it & my GP doesn't have any patients with it at the moment. However, I feel better this morning just reading this forum & all the helpful comments that you lovely people make.

  • Hi Teresa49! I can't comment advice wise as I am newly diagnosed with pmr since mid dec 2014 but I do know what you mean about the lonely bit!! And yes its a godsend this forum!I I hope you feel better very soon anyway.

  • Where do you live?

  • Hi PMRpro, I live in a small village just outside Rugby in Warwickshire.

    Thank you for your helpful advice, I read the posts on this forum all the time & have gained a lot of comfort from all the other sufferers out there.

  • Have you asked if there is a support group within reach? I appreciate that many people don't see driving as being as easy as I do but there is a very good and active support group in the Cambridge area which is an hour and half drive from you.

    "The Cambridge PMR-GCA Support group meets in

    Conference Room

    Cambridge Central Library

    Grand Arcade

    for futher information contact Charlotte Hodgson at cambridge@pmrgcauk.com

    or tel 01767 651084"

    and there is a support group in the Northampton area - a mere 38min drive!

    "Northants support Group

    Val jones barrieval@btinternet.com 01327 811 692"

    If you contact them they will tell you if they have members near to you.

  • Can you tell me why my sleep pattern is terrible, only get a few hours in a row of sleep

  • Thanks again for the info on support groups. I will look into the one in Northamptonshire.

    In answer to HurtingPat, my sleep patterns have been terrible since going on to Pred. /some nights I only get 3-4 hours which doesn't help with this illness but I try to have an hours rest in the afternoon. I'm afraid it is one of the side effects that we have to cope with but does get better I'm told when the dosage gets down.

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