Update from post yesterday re needing advice

[VickySponge]

Thank you for all the helpful comments.

Well there was some movement forward. The helpline resulted in a doctor from the rheumy team calling me . She listened but she firmly said CRVO and GCA aren't related and something else is going on and not to raise steroids . She suggested GPs get me an appointment with opthamologist quickly and that I have a blood test. A trip to ultrasound was to be dependent on inflammation markers as per the protocol. I told her firmly that, as I understand guidelines, increased steroids overrides all that with GCA, as a precaution and I was not happy with that decision.. I explained that the headache is temporal (cervicogenic head seems to be more up the back of the head), some night sweats have returned, my scalp is tingling all over, behind my eyes hurts, and I felt sweaty and feverish at times. She said she would speak to consultant and get back to me.

Half and hour later, she rang back as I was on the way to the GP and agreed that I am to up pred to 40 mg, they will try to get me in Tuesday for an ultrasound and she will arrange the eye appointment. She rang back later to say they will give me an eye appointment within this week so I am awaiting phone calls today.

I then saw the GP - my 5th one in that practice - he did listen and at first seemed more concerned with writing it all down. I asked for blood test and he asked me when i could come in for that. I was shocked!! I said I am here now and need this urgently . Finally agreed and called a nurse to talke the blood - last chance as it was about to be taken to the labs!! To be fair to him , he then asked me how they would be kept up to date as the notes from the trheumy last thursday were not yet with the GPs. I suggested well how about an appointment to do that!! So there is a follow up with him next Monday.

I am still so astonshed that this is not an integrated approach. Am I being over sensitive?

I guess I am particularly sensitive because my husband died 2 years ago of vasculitis - his was a different type ( GPA) which was never diagnosed until it had attacked his lungs and compromised his breathing. He was a very fit man and only 71. He never saw a haemotologist and a positive ANCA test was missed and was not reported to us. They thought it was bowel cancer and he was in a gastro ward but this turned out to be a blockage and the worsening in his lungs was missed. My complaint letter had 26 apologies from the hospital and 1 breach of duty. I was advised to do a negligence claim but emotionally it was too much for me.

[DorsetLady PMRGCAuk volunteer]

I am still so astonshed that this is not an integrated approach. Am I being over sensitive?

It should be, but unfortunately it isn’t in many places. But they do seem to have got things moving now.

Please let us know how things go.

[Fatsiajaponica]

Oh well done for being strong and challenging. Hope all goes well.

[PMRpro Ambassador]

Under the circumstances you might think your GPs at least would be a bit more proactive. I think the combination of post-Covid pressures and staff shortages has really compromised pathways unless it is a cancer-related one and that is why a lot of patients are shocked to find themselves referred under that as GPs try to get things done in a timely manner.

Someone has questioned why we feel it necessary to lecture on proper management of PMR - perhaps your stories are an illustration?

[Magster54]

I'm totally with you on the lack of an integrated system within the NHS. I changed GP and Health Authority 6 months ago, followinga house move. I visited the A +E at my new local hospital last month and needed an x-ray. The nurse who dealt with me congratulated me, on it being my first xray, at the grand age of 70 . I was really shocked when she told me the hospital doesn't have access to my medical records, only my GP. So they had idea I am on steroids or have PMR.

Time to get my Steroid Csrd updated and a new medi-alert bracelet