Kellgren Centre, Manchester Royal Infirmary - is anyone on here under their care please?

[AmberGamble]

I have both GCA & PMR and am looking for alternative treatment to just Pred… eg TCZ.

I have made an appointment to see Professor Ben Parker privately after being unable to be referred under the NHS, and wondered if anyone has or is being treated there?

Any information or experiences would be appreciated. Thankyou.

[PMRpro Ambassador]

One person on the forum is getting TCZ privately after an agreement was come to for them to pay for it via the NHS. I think they said they were paying something IRO £1100 per month. It is out of patent so it is possible that the price will come down in the future but that usually takes a few years befpre it filters through.

[Marypatmorgan in reply to PMRpro]

I am hoping that I can get into his NHS Clinic after this initial consultation. His PA suggested it, but I was turned down when referred by my GP via NHS, no reason given. His PA said they take patients ‘from all over’ and given that I am actually within their catchment area, I’m keeping my fingers crossed!

[PMRpro Ambassador in reply to Marypatmorgan]

Some triage person probably made a decision and he never saw it. If they think it sounds as if the GP knows what they are doing that is all they care.

[Jamiesons]

I was referred to the Kellgren Centre (MRI) by my rheumatologist at the Minerva Health Centre in Preston. My PMR has now progressed to PMR with large vessel vasculitis, involving the aorta.

I had been taking prednisolone since January 2020, and prednisone and methotrexate since March 2023. I was referred to the Kellgren Centre in November 2023. After one cancellation due to a doctors' strike, I was seen in February and started TCZ in April.

It’s early days, but I have been impressed with how quickly I receive information from MRI appointments, tests, letters, etc. via there app.

I have been told I will only be prescribed TCZ for 12 months.

If it improves my health not sure what I will do as I couldn’t afford to pay for private prescriptions of TCZ.

GOOD LUCK keep updating on here how you get on.

[Marypatmorgan in reply to Jamiesons]

Thank you so much! That’s so good to hear👍

I am desperately hoping that I can get under their care one way or another.

I have had to even pay to see the NHS consultant I should be under in my own health authority - Wigan - which comes within the Kellgren area of Greater Manchester, after waiting almost 6 months on NHS. When I mentioned TCZ for my GCA he actually rolled his eyes😞. My ex GP had a single conversation with him and he dictated my taper to me over the phone without me even seeing him.

That has left me with zero support as I am still not yet a Rheumatology patient! My new GP’s are much nicer but still not much help.

I am keeping everything crossed that I can get accepted at the Kellgren Centre as I know I will sadly get nowhere with Wigan.

[Artnmusiclover in reply to Jamiesons]

I was referred there too from Minerva 😊

[Artnmusiclover]

Yes I see Professor Anne Barton who is very nice. (Referred from minerva Preston). We have a good relationship and I feel 'heard' after appointments. I'm extremely fortunate it's approximately 4yrs since referral there and was an NHS referral. I know the waiting lists here are phenomenal but im sure you willget good treatment.. I wish you all the best 💐

[Marypatmorgan in reply to Artnmusiclover]

Thank you so much 👍