Follow up after biopsy

[Pamela60]

Hi all ,

Biopsy week gone Thursday - results yesterday at rheumy appointment.

Negative- which I probably expected having been on 40-50 mg prednisilone since November for ' probable ' GCA .

Dr decided as it was negative she's going for a quicker taper !

10mg a fortnight till I get to 20mg . Then 5 mg a fortnight till 10mg then 2.5 mg.

I voiced my concerns but she said she wanted bloods done if any flares before going back up.

I'm uneasy about this as I had to go up to 50 after jaw pain on chewing - her response was did I think I'd read too much and perhaps imagined it !!!!!!!!!

Gobsmacked!

I'm already thinking of changing dr to a nearer hospital as I have quite a journey for ten minutes of her time.

Your thoughts

Pam

[PMRpro Ambassador]

Yes - a reaction like that would be enough to put me off her. There was no real way that biopsy was going to be positive was there? And it is positive in less than half of cases even when done in a timely manner. The reason for doing a biopsy should only be in the hope it WILL be positive because then there is never any argument afterwards. The diagnosis otherwise should be clinical - and obviously originally someone thought it was very likely.

Why are you where you are if there is a nearer option anyway? How helpful is your GP?

[Pamela60 in reply to PMRpro]

I think I was sent to that hospital because I worked there when I had a stroke and was treated there. Or perhaps the first appointment available. it is 17 miles away from home - the nearer one about 4 miles,

S

That dr was the one who diagnosed on clinical sx !

[PMRpro Ambassador in reply to Pamela60]

Where are you (-ish, not postcode!)?

I do worry about doctors who don't have the courage of their convictions - if you sent a patient for a biopsy you should have fairish suspicions surely? Though she should have hurried it up...

[Pamela60 in reply to PMRpro]

Tyne & Wear - co durham

[PMRpro Ambassador in reply to Pamela60]

Where were you sent? Newcastle/Gateshead/Durham?

Are you in contact with the NE support group?

[Pamela60 in reply to PMRpro]

Satellite of Durham

Meeting Gateshead on 25th will go there

[PMRpro Ambassador in reply to Pamela60]

What - Bishops Auckland? I met a right numpty (male) there - didn't listen to me when I reported the 6 hour miracle of pred for my PMR, wanted it to be anything else but. I was still living in Durham when PMR became unbearable, the GP hadn't managed to offer any ideas for 5 years.

There is a superb consultant at Gateshead...

[Pamela60 in reply to PMRpro]

Shotley bridge - I live nearer queen Elizabeth hospital in Gateshead

[PMRpro Ambassador in reply to Pamela60]

Our friends live in Shotley Bridge, beside the hospital.

And I'd send anyone to QE in Gateshead! If you are going to the meeting ask around.

I'm sending you a pm.

[Dobermanlover]

Change!!!!!!!!!!!!!!!!!! Exactly what my doctor told me - do they think we haven't got brains of our own! They give us very little information, often sit there rubbing their chins, while thinking about what advice to tell us and then they have the cheek to tell us that we are reading too much!!! Sorry it makes me so angry. Hope you find someone who will listen and give you the proper advice. My Rhuemy was very good and wrote to my doctor saying that reductions should be slow, he hasn't mentioned my reading habits since!

[lillegirl]

Hi Pam, be very conscious of the way you are reducing, I know you will get some very sound advice from this site, but I would like to say it is not just flares that you will possibly have to cope with, but the withdrawal symptoms that are not at all pleasant or easy to cope with! They tried to do the same with me and after insisting on 10mg reduction a month, meant that I lost 10days out of my life to withdrawal symptoms each month for x2 months, I then insisted on reducing it to 5mgs a month, and now I'm insisting on only 10% every x2 weeks! Which hopefully I will have much less reaction to. My GPs do not have much idea at all about what is happening to me, the Rheumy has his own agenda, but I have decided after many other disagreements that I know my body best and after listening to it this is what I have decided to do, always informing the medics of my decisions and being prepared to put my reasons why to the medics!

It annoyed me that there was a report in the Times recently that , by suggestion, the GPs were calling their patients lazy and unable to understand and act upon advice, unable to understand the impact of how diseases effect them and cost the NHS astronomical amounts of monies because of this. I know GPs are Jack of all Trades, Masters of none, but perhaps they ought to take the time to listen to their patients and try and understand how their illnesses are effecting their lives!! Sorry for a bit of a rant, but I feel this is all relevant to your case, Pam. My advice would be go easy with your body, we all want to get off, and as quickly as poss, but not by putting ourselves at risk or living a zombie life!! Good Luck!

[PMRpro Ambassador in reply to lillegirl]

Never mind the GPs - who as you say are Jacks of all trades - the rheumies are sometimes even worse in my experience! Though, in fairness, I do know a few outstanding ones. Unfortunately, there aren't enough of them to cover the whole of the UK!