On 20mg pred since July '12 ,3rd attempt to reduce , a unrelated complication? causing problems.......

77yr Scubadiver till 2012,PMR July 20pred normal walking daily x 2,swim 2x wk.3rd attempt to reduce.Earlier 1mg red/weekly,too fast-thanks Kate,now reducing 1/2mg fortnightly since 8march.Up to 20mg. 13days@19 1/2.very slight lower leg ache/weakness& front feet cramp.25days @19 extended due to chest cold/infection.14days@18 1/2,some leg ache &weakness during day but less feet cramp. 18 since 1May.2nd May severe pain left leg,both feet cramp,pain left side neck.Locum Dr said Phlebitis-not blood clot-antibiotics.Painful walking,weak in lower legs,sleeping 2hr shifts! As always feel unwell for 24 hrs on taking weekly AA,so have not ,added to situation. Assume considerably unwell feeling due to Adrenals not helping fightig infection,and the antibiotics may also may not be helping.Do not wish to up the Pred,so taking paracetamol.Will see out antibiotic course and then decide.Feeling unwell and very down at the moment.Comments appreciated.Thanks John.Ps

[polkadotcom]

Hello John, could you clarify for me the Pred dose you are taking at the moment? You do sound very unwell and it isn't a good idea to keep reducing in those circumstances. I think you may be being hit from all sides - PMR can be depressive in itself as can infections and the antibiotics used to treat them.

Once you have completed the antibiotics course, take a couple of days to recuperate and then see how you feel. It doesn't have to be a race to feel better - take your time and right now rest as much as you can.

As regards the AA, have you had a DEXA scan? I wouldn't take it unless a scan showed me a need to do so. It is not without it's own side effects as you know but taking it if there is no need to do so is putting the cart before the horse rather.

I do hope you feel better soon and can take advantage of this lovely weather we are having. It's perked me up after a rather stressful time, so hoping it does the same for you.

Catie

[Hidden in reply to polkadotcom]

Thank you polkadotcom, Have taken 52 days @ 1/2 pred.per fortnight or more.Since 1March to present date @18mg.Have advised Surgery Nurse

on ordering more pred that I wish to have the Dexa scan to see if the AA is necessary,re side effects.I had such a scan a very few years ago as part of a study on scubadivers to ascertain long term underwater pressure effects on the bones, The study showed no effects..Yes it is a beautiful day,been for a walk in the sunshine,short.Mind not bad but lower legs say otherwise.

Thank you Catie, John

[ritter]

Hi John,I have mainly been on 20or 30mg of preds for over a year now and yes I have all your symptoms and more,I have GCA,and multiple fractures in spine and recently diagnosed with multiple embolisms in the lungs very scary,so you can get an idea of what sort of pain I am in.and the depression is awful never 2 days alike,any way John I do hope you get sorted very soon,you need to reduce very slowly indeed you will get well soon nothing last for ever,I too was rushed in with a swollen right hand and a swollen left leg and lots of pain of course they are doing test now for Rheumatoid arthritis I do feel a bit like a guinea pig.

keep your chin up and take each day as it comes John,kind regards Anne

[Hidden in reply to ritter]

Thank you Anne for the encouragement.It has helped to put my situation into perspective,You take care and I wish you well,

Kind regards John

[Celtic PMRGCAuk volunteer]

Hello John

I'm so sorry to hear what a tough time you are having in trying to reduce the steroids. The recent infection will certainly not have helped, and some sufferers do find that they have to increase their dose due to a flare in their symptoms following an infection. It isn't surprising to hear how low you are feeling as you are experiencing a double whammy of attacks on your body with both PMR and the infection.

If you aren't already under the care of a good rheumatologist, then it would be wise to ask your GP to refer you, especially as you have been having difficulty in reducing from as much as 20mgs Pred over almost a year now. Meanwhile, do try and keep up the daily walk as far as is comfortable for you - that also will help to release those feel-good endorphins to help you feel better.

[Hidden in reply to Celtic]

Hello Celtic. Re your first paragraph thank you for putting it so clearly and to the point,it helps.Good rheumatologist? my good Dr referred me to one and he said

my Dr had got it right ,gave me a Pred reduction plan,and that was it! No general information or advice what to expect.or follow up. I have been working with the Dr,

she is caring,as is the Practice and gleaning information from PMRGCAUK and fellow sufferes,blee them all,I am not alone.Will follow your advice- my moto-all the time you're swimming,you are not Drowning!

Kind Regards John

[soojay in reply to Hidden]

Poor ole Sosige,.........Take your time,and pace yourself.Its a hard lesson to learn,when one is used to being active.Im sure you will get there.Good luck and a hug.Soo.