Hi, I'm slowly reducing my pred by half mg a month and just started on 3.5mg. I started on 40mg with PMR and GCA in September 2021. I have a rheumy appointment next month where they will do the usual checks including ESR and CRP.
My appointments are now every 6 months. My GP has no interest in my treatment.
I am wondering what happens when I eventually (fingers crossed) come off pred all together. Does anyone monitor you? Will I still get regular blood tests, or do they just "discharge" you? I know from this forum that PMR/GCA can re-emerge at any time.
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Broseley
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Once you are discharged from Rheumatology care one would hope that the GP can be prevailed upon to provide maintenance care. They step right back when you have a Rheumatologist but surely have a duty of care when you no longer have one.
Assuming you are still under rheumatology when you go into remission -you are discharged… and will probably be advised to contact GP if you have any issues.
GCA & PMR can re-emerge -but for most, it doesn’t.
I cancelled my next Rheumy appointment scheduled for 21st June because it clashed with a more important post-op Consult for another matter. The Rheumatology appointment was a F2F with a Rheumy Nurse. I wrote to my consultant explaining why I was cancelling, gave him an update of my health and explained I had had no PMR/GCA symptoms for nearly a year, my current issues were endocrinological at 1.5mg Pred and suggested nicely that a nurse appointment would be a waste of my time and perhaps someone else would benefit more than me. I received another appointment for February next year, again with a nurse. My view is that by remaining within the Rheumy system if I do flare then I have a chance of getting to see someone pronto especially as he has a specialist interest in PMR and GCA. My GP service is terrible and I can't even get to see my GP to discuss getting a basal cortisol test.
I SEE a nurse for her to do the boring pain assessment which is meaningless as it is joints and aimed at RA patients. Then I get the best part of an hour with my lovely rheumy who is probably the most highly regarded PMR/GCA expert in the world according to Sarah Mackie. Which is why I'm staying here as long as I can ...
It's the same at my GP - it is turn up and wait, take a good book, but you get as long as you need and since everyone knows that one day THEY will need the long session, there is little complaint, The most impatient? Tourists ,,,
We only have 2 GPs at present as the best one has gone on maternity leave for a year. You can have F2F with Doc Martin (yes really) or phone with the other one. Doc Martin is past retirement age, very pleasant, but almost totally useless, saying things like "Oh yes I've heard of that" or "I don't know what that means" about my blood result. He generally agrees with what I say so is willing to adjust my prescriptions if I ask. The other doctor gives you 7 minutes, makes you feel rushed, talks too much and doesn't give you chance to speak. The reception team are no better. They told me the surgery isn't doing covid boosters for those with weakened immune systems, only over 75s. When I asked why, she said "it's a different vaccine". Well I've just been for my booster - I had to drive 20 miles for it rather than just walk round the corner, and they said the jab is the same for everyone. They did give it to me on 3.5mg pred, so I'm pleased.
They also told me I couldn't have a medication review, they're not doing them any more. But at a blood test last week I asked the nurse about my calcium pills. She took me straight up to the pharmacist's office and he gave me a thorough review.
I have an appointment with the practice manager on Monday so she can address my complaints.
I recently asked my GP if he would like to be my new rheumie. I am only down to 4.5mg Pred but as my lovely rheumie decided to go 'academic' and was replaced with a boy rheumie, I couldn't cope. He had a completely disinterested approach. Anyway GP is happy to take over. As I explained we can get blood tests as usual and if I have difficult questions I can always call on the expertise of you people on the forum.All in all a good outcome I feel
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