coming off steroids

Hello Margaret and it's good that you've joined us at this difficult time for you because you'll find it reassuring to be able to talk to others who understand what you are going through. You are the second person to join the forum in the last couple of weeks who has a consultant and GP who aren't in agreement with your diagnosis but at least the consultant is acting to ensure that the right diagnosis has been made, albeit it is going to be a bit of a challenge for you to be without the steroids if, in fact, it is proved that you do definitely have PMR and/or GCA. You haven't said how long you have been on the medication or what your starting dose was and it may be that you will need a higher starting dose if GCA is confirmed. I hope that whatever the resultant diagnosis is that you will quickly be prescribed the right medication to make you feel better.

MrsO

margaret e (guest)

Whilst I am not so worried about the split diagnostics on the PMR.

GCA is a worry. You say you have headache which does not go away and tends to be on one side and face pain. Is your jaw aching? Do you have difficulty in chewing? Do bright lights bother you? How are you at watching the TV. Does your vision blur occasionally?

These are classic symptoms of GCA and should not be dismissed lightly.

Nobody and I mean nobody can mess around with a diagnoses of GCA. Go to this website www.pmr-gca-northeast.org.uk and read up the symptoms on GCA. Also visit the NHS website and read up on them there and furthermore the British Society of Rheumatologists has guidelines on their website.

GCA left untreated can lead to loss or partial loss of vision. Do not take the risk.

i thinki went into the site the wrong way, i have been a member of this site for some months now, and was first diagnosed with giant cell way back in april of this year, but did not see the consultant until august, by which time the 12 steroids at 5 mg each was well under way. so have been decreasing for some time now, but having decreased to now 2.5 i think the gian cell an pmr is beginning to show through again, my doctor told me to go and see him if the pains came back too much, i think i might have to do thawt will give it a few more days, to see if i settle. some times with a decrease i react for a few days afterwards and then seem to adjust, i do have a heart condition, and am diabetic, and have a sponylosis as well, so some times things get confusing.

Hello Margaret Edwards - Like you, I have PMR and GCA and also like you have a spinal problem (spondlolisthesis - slipped vertebrae) and I agree that the symptoms of the latter can really confuse the whole PMR 'thing'.

It really surprises me that having started on 60mgs last April (I started on 40mgs in March 2007) you have already got down as low as 2.5 - this seems an exceptionally fast reduction. Have you been having ESR and CRP blood tests prior to all the reductions from the higher doses?

I do agree with your experience of the body taking a few days to adjust to the new dose before settling down. However, in the case of GCA it is very important that you don't ignore the symptoms but get an urgent blood test because if there is increased inflammation showing in the tests, it is then vital that you have the correct dose in order to reduce that inflammation from the artery feeding the blood vessels at the back of the eye in order to protect your eyesight. I really hate to be a scaremonger like this, but it really is a risk not worth taking. Do let us know how you get on. My very best wishes to you.

MrsO