feeling unloved?

[Trovatello]

I have just had my October 17 appt with my rHeumy at Leicester general changed to March 21 2025. I am down to 2 mg working on less than 1/2 mg per 5 or 6 weeks and listening to stuttering adrenals. I have had no bloods taken for 8 mths. It is rather difficult not to feel neglected and abandoned by the NHS. This makes our forum all the more important. Thank you.

[Rugger]

Can you ask your GP to do the bloods? My GP practice checks mine in between my Rheumatology appointments, so I can see if the inflammation is under control, or not.

My hospital appointments are usually about 6-monthly, so I ask for the bloods every 3 months.

Best wishes - you are not unloved by us! 😘

[Koalajane]

I think sometimes you have to be proactive and visit your GP if you have worries.

I don’t have blood tests for inflammation levels but know I can ask if I need them. I feel that symptoms are more important than tests.

If you feel you need an appointment with your rheumy then ring the appointment desk and ask if you can have one. They are usually helpful.

But I am sure you are not unloved!

[random901 in reply to Koalajane]

Does your hospital have a "passport" system in Pathology? I can get repeat blood tests done to check inflamation. Walk-in. No appointment. My rheumy set it up.

[Koalajane in reply to random901]

I think this is for Trovatello not me

[random901]

sorry! 😏

[SID3]

my GP does six monthly bloods as I only saw a rheumy once on the first diagnosis - then ‘discharged to GP care’ (and PMRUK, thankfully).

[Bcol]

After the first few months when my doc/surgery were happy that I was happy and they were happy to let me manage myself, I never had booked in appointments for bloods etc, other than my usual annual checkup, but they were always there for me, sorted any requests I made for advice, blood tests etc and always a same day f2f appointment. All this during the pandemic as well and never any pressure to get off Pred.

[Sophiestree]

I wonder of they moved it as you are on a low dose and not a high priority for them. I have had 3 cancelled appts from Endocrinology and just recently a 4th I should have seen them after my parathyroid surgery last March (2023)

Like others I ask my GP practice re bloods if I want them

[DorsetLady PMRGCAuk volunteer]

Unfortunately you are not alone in this we have had a few posts about re-arranged appointments. Plus new patients waiting a long time for their first appointment.

As you are down to 2mg do you really need to see a Rheumy? Do you still have access to their helpline if you need to contact?

[Numptybrain]

I would contact your gp surgery and get an appointment for a check up just to make sure you are ok then you can discuss keeping an eye on you from there on. Does that sound a possibility?

Take care

Wendy xx