I found rheum nurse to be more helpful. Last twice I have bloods then see nurse after 3 weeks and consultant 3 month from last time I saw him. The nurse at least listened and talked and rang me same day as test. I do hope they get it sorted to your satifsfaction. I am sure other who also have "normal" bloods but pmr for defo will join in.
Hi Ronzy, around twenty per cent of people do not have raised blood results. This seems to confuse doctors some of whom seem totally unaware of this, although they should know. Sounds like the consultant you saw had a bit more of a clue.
Poor you Ronzy. How maddening that your appointment was messed up especially as you are suffering all the effects of a rapid drop in Pred. At least the last doctor seemed to know a bit eg that it does not show up in blood tests always.I would slow my reduction down now that you aren't seeing him for 3 weeks. Good luck!
By symptoms. You reduce slowly until symptoms appear and return IMMEDIATELY to the previous dose where you were good. Markers are only a guide and can be affected by many other things. And you reduce SLOWLY with SMALL STEPS so you eliminate the likelihood of steroid withdrawal pain.
Quite a few of us on the forums have the same challenge - and to be honest - I think it is better as you are never misled which can happen a lot with blood results.
Hi Ronzy, are you saying that you are going to drop from 15mg to 5mg all in one go and you only have 5mg worth of tablets per day while you are on holiday? Does your doctor know anything about tapering steroids for people with PMR? Personally I would be a bit worried taking that sort of drop and going on holiday with such a small amount of tablets. Is there any way you can get some extra in case it is too large a drop, which in my opinion it is? I would allow 15mg a day just in case. I really would talk to your doctor before you go away about it.
Do make sure you have enough medication with you - and explain in words of one syllable to your GP that they are risking your holiday for you making you reduce like that! Reduce by all means - but NOT 10mg at a time and not when you are going to be away on holiday with no access to your surgery and GPs. It is a long way to a hospital from Whitby!
However - although I KNOW this isn't what you want while on holiday, IF you do have any signs or symptoms of GCA while you are in Whitby don't hesitate to call 999 because YAS (Yorkshire Ambo Service) are taught about GCA and know it should be treated as a medical emergency.
When it comes to medical things Whitby really isn't the hub of the universe - but their paramedics are OK. Though I suppose I'm biased since my daughter is one there I was supposed to be there at the end of the month - but we've had to cancel our UK trip So no fish and chips for me this year...
I think we just have to pay close attention to how we feel from day to day. There is no mistaking PMR pains. Steroid withdrawal pains are similar but they wear off as opposed to getting worse.
Hi Ronzy. I have GCA ( cranial) and PMR and very low blood results- ESR - now about 3 ( never higher than 16) and CRP usually 1 to -1 . None of this indicates inflammation as do quite a few of us so that's one less thing to worry about because you cannot rely on the results at all! You can only go by your symptoms and symptoms are king anyway as often blood results lag behind what is actually happening in body. I think it is 20% of folk that do not have raised blood markers so you are not alone.
It does just mean that you have to listen closely to your body re flares or withdrawals but then most folk have to do that anyway.
Sorry that you have had such a mix up with Consultant appointment. Do let us know how you get on. Good though that you have contact with Rheumy nurse. Best wishes Jackie
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I was supposed to be there at the end of the month - but we've had to cancel our UK trip 
So no fish and chips for me this year...
When is a 'Cancelled' Rheumatology Appointment not a cancelled appointment?
Disappointed and worried
Disappointed
A little disappointed...
Post Rheumatology Appointment 
