Update on appointment with professor Hughes

[Griggser]

So I had a really good appointment today with professor Hughes. He listened to what I had to say and had read the medical history pre read I had sent him. After a good chat about my PMR/pred journey and all the steroid sparing drugs I had tried he came up with 3 options.

1. Stay on 10mg of pred and continue the DSNS reduction plan.

2. Try 20mg methotrexate for 4 months as likely when on it before I hadn’t given it enough time at 20mg to be effective. There was a rider that methotrexate is not really proven to be effective for many.

3. Depo-medrone intravenous injection of 120mg every 3 months in addition to 1 above.

I’ll be contacting my GP once he gets the report from Prof Hughes and see if I can get the option 3 up and running, fingers crossed.

We did also discuss about Tociuzimab but no real chance of getting this for PMR “YET”..

Overall a worth while visit and Professor Hughes was really helpful and really knowledgeable as others have sad

[DorsetLady PMRGCAuk volunteer]

Good to hear you had a productive appointment- and hopefully you can get your preferred option up and running.

Please let us know how things go, and good luck.

[PMRpro Ambassador]

I think it is helpful when a doctor looks at things from various viewpoints and offers a choice - makes you feel empowered.

[SusyTe]

So pleased you had a good appointment with Professor Hughes - I always feel better when I have seen him. He really listens and is so knowledgeable and helpful with his suggestions. I wish we could clone him. 😊

[PMRpro Ambassador in reply to SusyTe]

I suggested a sort of online advisory reference committee, formed by the ones we know are trustworthy to disseminate good practice. If it were made something desirable to be part of, other rheumies would want to come and play too.

[SusyTe in reply to PMRpro]

What a wonderful idea. PMRpro! Hope it comes to fruition.

[Pixix in reply to PMRpro]

Excellent!

[Griggser in reply to PMRpro]

I understand Sarah Mackie is undertaking a research project on the effectiveness of methotrexate as a steroid sparer but is having difficulty in finding participants. I’m sure if she looked on here there would be some willing volunteers. Just thought it worth putting that out there.

[PMRpro Ambassador in reply to Griggser]

She did advertise it during her talk last week. Not many will see you comment - me and DL probably. Why not post it as a new thread?

[Nightingales in reply to PMRpro]

I am in communication with her about possibly being a participant. I wrote a query to her and she sent the Participant information sheet. Email [e-mail] and Reference Sterling study in the title. I am waiting for a phone call to see if I qualify. I will try to remember to ask if we can advertise it on our site. There is not a lot of info available on line about participating sites, which might be an issue for me. I just love her. She is always so kind and friendly in her emails.

[PMRpro Ambassador in reply to Nightingales]

And even better in person!!

If there were an online clinic for advising on the care for difficult to manage patients made up of Sarah Mackie, Max Yates, Rod Hughes and my rheumy, Christian Dejaco, plus a selection of others, the PMRGCA world would be a better place!!!!

[Gimme]

That sounds like well thought out advice and like he treats patients as people, not just an illness. That's uplifting to hear.

[Hidden]

You have had a complicated time. Could you say a little more about the thinking behind offering you the Depo medrone and why you decided to favour the option?

[Griggser]

I am having a log of oain at night so sleep is very disturbed, waking with pain in shoulders and hips. Of course as soon as I wake the post herpetic nerve pain around my right eye and right side of scalp kicks off. As I had tried all the other steroid sparing drugs I had the option of the depo-medrone or methotrexate, of course I could just carry on as I was! As the methotrexate didn’t seem to work when I took it and I think it’s quite a nasty drug the depo-medrone seemed the best option. I think I said in my original post that it was very unlikely that I would qualify for Tocilizumab.