First Rheumatology Appointment

[GreatGranny4]

I had my first rheumatology appointment today and I think it well unless any of you think otherwise as I wasn’t sure what to expect.

I was diagnosed with PMR by GP at the end of June 2023 and successfully tapered from 15mg of Prednisolone to 10mg by the end of August however after three failed attempts to taper to 9mg he wanted to refer me to the rheumatologist who said that I needed to have new blood tests for him to see my levels so I dropped to 9mg for the fourth time and by the time I’d had the blood tests I felt I was back to square one! I went back to 10mg at the beginning of December and stayed there until today.

I saw a registrar who took all my history and got me to do various things, then he went to discuss it with the consultant who then came back with him to talk to me. My biggest concern was that in four weeks we are travelling to Australia for our granddaughters wedding, he was very understanding and said he wanted me to have a PET Scan to rule out vasculitis and I should have it within the next two weeks, I also had more blood tests. If he is satisfied with the results of the scan and blood then he is happy for me to stay on 10mg until we come back home at the end of April and then re- assess what we do next.

I was quite reassured by how I was treated and the outcome so far, Methotrexate was mentioned if vasculitis showed on the scan. What do all of you who are much better qualified than me think of how it went? Should I have asked about anything else? I will have either a phone or clinic appointment when they have the results.

Sorry if that’s long winded but would be grateful for your thoughts.

[piglette]

It sounds as if you have come across one of the better rheumatologists. PET Scans are like hen's teeth in my area so that is good news too.

[GreatGranny4 in reply to piglette]

Thanks piglette I was quite surprised when he said he’d send me for the scan. So I’ll just wait and see where we go from here.

[piglette in reply to GreatGranny4]

It will be interesting.

[123-go]

I agree with piglette-he does sound like one of the better ones. If you remain feeling well on 10mg until your departure for Australia all well and good but I would make sure that you have extra prednisolone with you throughout your trip in case of return of symptoms due to all the excitement and change in routine. You will need to ask for extra to be put on your prescription.

Let us know how things go and then come back for helpful tips regarding travel and strategies that may be useful when you are out of your normal routine.

[GreatGranny4 in reply to 123-go]

123-go thank you for replying. My GP has already said that he would give me an extra months prescription to be on the safe side. I did wonder if the flight and journey time might have any impact but II’ll just have to see how it goes.

[PMRpro Ambassador]

Sounds like fairly positive experience.

I think the GP was being a bit ambitious having gone from 15 to 10 in 2 months to expect a further drop to go easily - very early days. However - you seem still to be stuck so fair enough and you have GOT a rheumy in reasonable time!

[GreatGranny4 in reply to PMRpro]

Thanks PMRpro, there seems so much more to PMR than I first realised so I’ll just have to see how things go.

I’m very grateful to have access to such a knowledgeable group of people. Thank you.

[PMRpro Ambassador in reply to GreatGranny4]

We have all been there - we know what is involved!

[SheffieldJane]

I agree with the others. Ensure you arrange airport assistance for your journey. It really made all the difference in the world. There were massive long treks across airports during my trip to see family in Australia. I don’t know how I would have managed without the wheelchair and the person pushing me. The weather made me feel a lot better too. Take extra Pred with you in case of flares. I took a prescription with me for customs.

[GreatGranny4 in reply to SheffieldJane]

Thanks SheffieldJane, I appreciate your advice. My husband has health conditions so we’re used to making sure we have copies of repeat prescriptions and consultants letters with us in case we’re stopped. My GP is giving me an extra months prescription so that will hopefully cover me if I need to increase my dose.