Update on last blood test

[Suffererc]

surprised by call from GP just now. Apologised for not calling sooner.

I had ‘Asked my GP’ if I could raise the Pred a bit as I was having a flare . As she had asked me to do . Another GP came back to me, who has never seen or spoken to me and told me to stay on 2mg. This was by message.

Today I have gone to 5mg and feel good and my GP rang. She wasn’t pleased. Asked If I had heard from Rheumatologist . She referred me 3 times. She is worried that I have been on steroids 5 years . Told her I was down to 1.5 and would start a taper in 2/3 days. Dropping to 2.5. Wasn’t very pleased. Am I doing the right thing.

[SheffieldJane]

well I think you are doing marvellously well. Good luck!

[Koalajane]

I think there is no problem to be still on prednisolone after 5 years. After all the median time for PMR is 5.9 years!

I am still on it after 6 years and on 5.5mg. My doctor does not seem worried about it.

[Suffererc in reply to Koalajane]

😊

[Seacat30]

Maybe this will inspire her to chase up her Rheumatology referrals?

[Suffererc in reply to Seacat30]

why don’t GPs try to understand it is not a 2 year thing for everyone. If they suffered the pain and disability they mite be more understanding

[Purpleazalia]

The saying 'might as well be hanged for a sheep as a lamb' comes to mind!! You've let them know and had your 'ticking off'!

If it were me, I would treat as a flare and take the extra for enough days to clear it properly before dropping back down - to lesson the chance of it not working and having to repeat.

Hope you see the improvement you need x

[Suffererc in reply to Purpleazalia]

that’s the plan. They tho are stuck with the 2 year cure . She should have phoned sooner . I was waiting for her to tell me what to do, as she had asked

[Purpleazalia in reply to Suffererc]

Absolutely. She also shouldn't be making you feel guilty for wanting to take the necessary steps to treat your condition effectively x

[Suffererc in reply to Purpleazalia]

😊

[PMRpro Ambassador]

I think you are doing fine - and she is on another planet! To be honest, I would be surprised if the rheumy department is interested in a patient at as low as dose as you are, especially in the current climate.

And anyway - if she tries to drag you off pred too fast now, it isn't just the PMR that will raise its head but she would be putting you at risk of an adrenal crisis.

[Suffererc in reply to PMRpro]

this is the 4th referral she has made. You would think she would get the message. Just waiting for her to raise the MTX for me next. As she has said in the past . They have hundreds of patients with PMR. Perhaps I am the only one causing problems 😂🤣😂

[PMRpro Ambassador in reply to Suffererc]

At least she isn't in a position to inflict MTX - that is up to a specialist! Must be a very special GP practice if they have hundreds of PMR patients! Or is it one of these things with 26,000 patients? Actually - if the practice has HUNDREDS of PMR patients, why aren't they hosting a support group for them?

[Suffererc in reply to PMRpro]

No not a big practice. Good point tho about support group. Far too busy for anything like that !!! Had a dose of one of the other partners who can diagnose without knowing or seeing a person. Think they all under the 2 year myth. Get the feeling too , it’s a woman problem so no need to bother

[Jackoh]

you’re doing fine! Regardless and in spite of your GP practice! 👍💐

[MamaBeagle]

I can't remember the exact scenario now but I had an appointment about a different matter. He attended to the problem in hand then noted that I "was still on prednisolone and needed to be referred to a rheumatologist because I'd been on it too long" I said I wouldn't be taking it if he I didn't need it. He insisted, I was on 2 or 3mg at the time. I never heard anything. 🤷🏼‍♀️

[whitefishbay]

Sounds good to me.

[Blearyeyed]

Is she unhappy with you or the delay seeing a Rheumatologist?If it is you , take no notice , you took sick Day medication , you are going to go back down to continue your taper with little support which is good when you consider the issues you've had getting there.

If it's the delays , that's as much her fault as the hospital's. If she wants to get you help to reduce she should pull her finger out and make her complaints about the delays. She can't blame you for still struggling when she knows that you need extra help and have not been given it.

Perhaps , if they realised and acted on the fact that phone requests about dose changes in flares should be considered urgent and not left for days she could have more input in your choices and her opinion would be more valid.

But , unless she's going to do what's required to help you , you are helping yourself enough , so if she's not going to step up she should shut up!

Gosh , I think I must have taken the wrong pep pills this morning I'm sounding far more bolshy than usual!

You take care and have a big virtual hug , Bee

[Suffererc in reply to Blearyeyed]

not expecting the Rheumatologist to see me . I am normally on 1.5/1 Pred. Nearly there. She just needs to be more patient 😊