Worried about seeing rheumy

[Mary63]

I was diagnosed with PMR in January, and am one of the lucky ones who was completely pain free within 8 hours of starting pred. I had a massive row with my GP who did not think I had PMR, because my ESR is not raised, and my CRP is only 11 or 12. I then went to Australia for 3 weeks and on my return saw another Gp, who requested I reduce from 20mg to 15mg which I did with no problem symptomatically.

She made a request for an urgent rheumy appointment, saying that she wanted his advice about a quick taper. Of course the urgent appointment has taken 6 weeks, and I am due to go on Wednesday. 

Last week when I was running out of tablets I wrote to the second GP requesting another prescription and suggested that I reduce to 14mg if that was OK with her.  i received no reply but a script for 1mg tablets was dispensed, so I am presuming she was in agreement. 

I have a dread that this Rheumy is going to say that I don't have PMR and reduce me fast.  Shall I reduce by another mg to show that i am willing to taper? 

What shall I say if he says that I cannot have PMR with near normal bloods?  I know from this forum that ?20% of people do not have raised ESR or CRP. Is that written down/ proven anywhere?  so I could take some evidence with me.

Of course I may get a completely different reaction from him, and be worrying unnecessarily.

Do any of you have advice about tapering from the dose I am on?  I think I remember reading on this forum that more than 1% might be problematic. So to go from 14mg to 10 might be difficult.

Thanks everyone 

Mary

[PMRpro Ambassador]

It is in the medical literature, all over the internet, and is a well known fact although there are quite a lot of rheumies who dispute it. But there are a few rheumies who will try to tell us that you can't have it even in your 60s, there are rheumies who claim if it lasts more than 2 years "by definition" it isn't PMR (whose definition I have no idea, not one I've ever seen).

In the meantime, don't worry about what the rheumy is going to say - cross that bridge when you get to it. S/he may well feel exploring what happens when you reduce the pred dose is going to be necessary and may want to do a whole load of other tests - some of which won't mean much of you are on pred. Make sure you have notes of when it started, how long it was before you saw a doctor, symptoms before and after being put onto pred. Have it written down and to hand when you go in so you don't forget it - then you won't forget things that are so obvious to you now but under the pressure of the appointment you may well.

Out of interest - if your GP was so against a diagnosis of PMR how did you get to have pred at all? And why didn't the first GP refer you to a rheumatologist in the first place - this is a question that is seriously bending my mind at present. There is an insistence that younger people don't get PMR - they aren't SEEN to get PMR because GPs like yours decide that whatever it is, it isn't PMR for whatever reason and that it doesn't need to be referred to a specialist. So they don't see the "atypical" patients and it carries on being a case of unless it ticks all the boxes it can't be PMR.

[Mary63]

Thanks very much for your response PMRpro. 

In answer to your question how did I get to start on steroids when my GP did not think I had PMR. I had already found this forum when I had the conversation with him by phone and I was convinced I had PMR from all my symptoms. He had never even examined my arms neck and shoulders hadn't considered any differential diagnosis. He was sure it was just old age aches and pains when it had been sudden onset.

I knew from this forum that some people had near normal bloods, and most importantly I was due to go to Australia 2 days later, and was going to have to cancel the holiday as I could not sit for longer than 10 minutes. I had also made a point early on of asking him how many patients he had ever had with PMR or GCA. Only 1!! So I kept referring to that fact.  I had also insisted on him doing the blood tests, so everything had been led by me. I think I must have just worn him down in the end  

I will be quite happy to have more tests to exclude other possibilities which might be confused with PMR. You are right I must wait and see how Wednesday goes rather than presume there will be problems. 

Just reread this post and I sound like a right old battle axe.  Fact is I hate confrontation, but I felt so ill and hacked off at poor care it turned me into a different person.   Because of advice previously aired on this forum my husband is coming with me. 

[PMRpro Ambassador in reply to Mary63]

One of my favourite types - can't be bothered to get off your bum and examine the patient... 

There are a lot of us who have got hacked off at poor care and become quite bolshy as a result. I had 5 years of it because the GP could send me to the nurse to have blood taken, he couldn't manage to think about what this young woman (early 50s at the time) might really have when ESR/CRP were normal. In fact I was lucky I suppose it was "just" PMR and not one of the other causes of the symptoms - because that is really what it is, a set of symptoms due to some underlying cause which can be banal or thoroughly nasty. After 12 years I haven't succumbed to any of the other options - but I still have to take it on trust there isn't anything else going on (not that I want there to be, but there might be).

[Mary63 in reply to PMRpro]

Thanks again.  I will let you know how I get on.

[Mary63]

Well I should NOT have worried.  That is the problem when you mostly hear about problems and difficulties on this forum! One looks for trouble when it might not be there, and you don't often hear about the good ones.

Anyway I saw a lovely young female registrar at Croydon University Hospital, who having read my timeline of symptoms, and the GP letter, was convinced I have PMR, and despite being very professional, was obviously surprised that I had such a fight with 2 GPS.

Anyway she has given me a very sensible programme of tapering, to be managed by me should i get a flare on reducing dosage. She explained about steroid withdrawal possibly mimicking a flare later on.  She offered to see me again in 4 months [or to go back to GP for management] Gave me a phone number if I have any problems,  Couldn't have been better...WOW!!