GP and further blood test

[linnypin1]

Hi I've been diagnosed with PMG through a blood test last year. Started Steroids was feeling good again, I had asthma really quite bad and had to have a couple of doses of antibiotics plus 8 steroids per day for 7 days. When I had recovered from the chest infections and the asthma was back under control my GP said we ought to get you off the steroids and get another blood test sorted out, so I'm coming down to 3 (5g ) a day from 4 (5g) a day and I can't lift an empty kettle to refill it, it takes me an hour in pain to get dressed and I've started taking Ibuprofen for the pain, which I've read on the forum isn't good. So looks like I can't have a blood test done whilst on the steroids but trying to come down off them is like a living hell, even my knuckle joints are red and swollen, very painful, feel I can't say to my GP I need to stay on steroids because at least I did feel like I had a life when I was on a higher dose. Any comments would be great. I'm glad I came across this site it's very interesting to read about other people who have the same nasty disease. 

[piglette]

Why can't you have a blood test?

[DorsetLady PMRGCAuk volunteer]

Hi,

Same question as piglette, why can't you have blood test now. Is your doctor not confident in the initial diagnosis of PMR? 

As for reducing from 20mg to 15mg - it's too big a jump, so no wonder you have pains. In essence it's a drop of 25% whereas the recommended drop is no more than 10% in any one go. 

You need to speak to doctor telling him how much pain you are in and query the blood test. 

And no, it's not recommended to take Ibruprofen with steroids - can cause gut problems. 

Hope you soon get sorted. 

[suzy1959]

I don't understand why you have to come off the steroids before having a blood test. If your diagnosis is PMR then you need to stay on the steroids until it has gone away which is very unlikely to be after a year. Added to this, it sounds as if your symptoms are coming back with a vengeance which is all the proof you need that you still have PMR. A blood test will not tell you anything you don't already know from the symptoms.

I am all for patient power- the doctors won't know what it is like for you unless you tell them!

[PMRpro Ambassador]

What blood test  is he on about? There is no blood test to say it is or it isn't PMR. It is a clinical diagnosis (symptoms and history) possibly backed up by raised ESR and CRP. 

If you have symptoms and he is confident in the diagnosis of PMR then you need to start from 20mg again by the sound of things and reduce in far smaller steps - 5mg at a time here is far too much. Why does he want you "off steroids"?

To be honest - I think you need a doctor who knows what he's doing in PMR, and I'm far from convinced he does.

[Nurseblossom71]

Ask your GP to prescribe 2.5 mgms and 1 mgm tablets of prednisone  and reduce slowly so you will sure at what level the pains come back. If that happens increase by 1 slowly. You own you polymyalgia not the Dr. You could be on unnecessarily  larger dose whilst waiting for Dr to prescribe a dose. You are the only person who knows the pain you are in . Whilst the blood tests are a good indicatior, they aren't fool proof and give a reading for imflamation in the body which could be caused by somethings else

[elainecleary]

Since being diagnosed last June, I have been up and down with my steroid doses. I started on 15mg but before being able to start reducing I had a chest infection (I also have COPD) and the steroids were upped to 17mg. Since then I have unfortunately had a succession of infection and have been hospitalized twice, the highest my steroids have been is 35mg (raised by first hospital consultant), came out and had reduced down to 20mg.  Then back in hospital and that consultant Having diagnosed Osteoporosis of the spine, with multiple wedge fractures, reduced them from 20mg to 17.5mg and sent directions to my GP.  get me off them completely, it seems that all medical professionals have their own ideas.  Thankfully my GP. is brilliant, we work together and he understands the need for steroids with PMR.  I don't understand why you can't have blood tests on steroids, I  have them regularly and I am now on 15mg until after my next blood test in June.  Incidentally as I am going to Italy at the end of May for my son's wedding and my GP. understands that I might be stressed, he has told me to up the steroids to 17.5mg if I feel the need, then come down when I get back. If your GP. doesn't seem to understand then be forceful it's your body, your pain and if like most people with PMR you have been doing your homework, you probably know more about it than your GP. by now.  Good  luck, but don't put up with the pain just because someone else thinks they know best.