ROD HUGHES advice to me

[Bennijax]

I have taken the recommendation from several of you to have a private consultation with Professor Hughes.

I am no longer under the NHS care of any rheumatologist until next July; meanwhile my intake of prednisolone has been going up and up instead of slowly tapering down. I started at 7.5mg per day in March 2021. I got to 7mg and had the first flare which pushed me up to 12mg. I' ve been yoyo-ing since.

Lately I was feeling good at 15. Over a few weeks I, managed to taper to 12 but I am not feeling at all well on 12.

So I wrote to Professor Hughes and sent him in the various information he requested to speak with me as a new patient.

He had read what I sent him and had a fairly accurate idea of what has been my journey so far, particularly the pattern of the flares I've been having, most of them related to the two Covid vaccination in 2021, the four booster shots, having had my first bout of Covid, then the respiratory bacterial infection that followed that, through December 2022.

He offered me two options to help me reduce:

Option 1. to have an injection of 80ml Depo-medrone, and two weeks after this to taper to 11mg; two weeks after that to taper to 10mg. Then to stay on 10 mg and observe the PMR symptoms.

Then to have a third 80ml D-M injection and taper at .5mg per month. I think he is saying to have the D-M injections every three months but he is not clear on this so I will write to him to clarify.

Option 2: use a steroid sparer such as Methotrexate subcutaneous 15mg once weekly with 5mg folic acid the day after the injection, and explore whether this will allow me to serially reduce the steroid intake by .5 mg a month.

Is this method familiar to anyone? and might you recommend it?

[PMRrunner]

I'm on 15mg Methotrexate(tablets) and 5mg Folic acid weekly and this has allowed me to slowly taper down to 4mg prednisolone. It's taken me over 6 months to taper from 5mg though I have had some hiccups on the way ..... shingles, covid and a flare after the last covid booster. I'm going to stay at 4mg for a while before starting to taper down to 3.5mg as feeling fatigued which my be the methotrexate or my adrenal glands stuttering into life. Good luck with whatever you decide to do.

[valrene in reply to PMRrunner]

Hi same problem here 4 years ago when I reached 5 mg pred, Rheumy started me on methotrexate which pushed my liver enzymes up, so started on Leflunomide, took me about 6 months to finally finish pred. 4years later still on 10mg of Leflunomide no flares or pain. Good luck.

[Bennijax in reply to valrene]

thank you Valerie, have you had any bothersome side effects from LEF?

[Bennijax in reply to valrene]

using the steroid sparer, how quickly were you able to taper? .5mg or more per month?

[Pixix]

I had an 80ml depo medrone injection two weeks ago, but it had no connection to my PMR. I am on 3.5mg pred & going down by 0.5mg each month. My PMR is stable. I had the depo medrone injection for suspected rheumatoid arthritis, & to try & ease my joint pain while I queue to see a specialist. I have no current flare of PMR, but I was getting some shoulder problems (overdid the decorating & housework). The depo medrone injections…I don’t think the good effect (if you get one) lasts for long. I’m going to ask my GP when he rings me for a follow up chat tomorrow. My understanding is that depo medrone is yet more steroids into my body, which isn’t something I personally want! It gave me a huge appetite & it’s been hard not to eat everything I can get my hands on…but again not everybody gets the side effects, & my results are not necessarily what you would get, & the injection is for a different reason! I’ve been reading the depo medrone injection up on Google…lots of info…I had an hour with my doctor, during which time he diagnosed a couple of problems, but not enough time to really discuss it all!!

[Gaz227]

I saw professor Hughes some years ago really helped me when I was in a dark place , I hadn’t got a plan of attack , he did similar for me . I have now taken the MTX path , i also have Sapho syndrome ( bone issues) which moved the goalposts a little , but I am now on 10mg MTX injections once weekly and 5mg folic acid 24 hours later , I have managed to reduce to 3mg pred I was told at the time I would probably be on 5mg pred for the rest of my life well I’ve provide them wrong . I still hope to get off pred but I think I will have to increase the MTX to make that happen but he told me long term with my particular health conditions long term MTX would be more beneficial than pred , we all are different and if it was just PMR I was dealing with low dose pred would have been a comfortable option . Good luck 👍🤞

[Bennijax in reply to Gaz227]

thank youGaz227. How have you experienced MTX?

And, what is Sappho Syndrome, I’ve not heard of that one,.

[Gaz227]

MTX has been ok had some fatigue the day after the injection for a couple of months but that’s ok now . SAPHO is an acronym I don’t have the skin issues common issues are clavicle , upper spine and sternum pain the bones get very calcified and swell up , it can hit other areas ankles and knees are common also , my Rheumy said it doesn’t respond well to Biologics hence the use the MTX .

[Bennijax in reply to Gaz227]

Thanks Gaz, I was wondering as I've already had a swollen clavicle issue which went away on its own, and now sharp rib pain on my left side, without any obvious reason. And since a year ago, facial hard pustules that I never had previously , had beautiful clear skin. Its a form of rosacia I was told. I hate it.

[Gaz227 in reply to Bennijax]

might be worth mentioning it to your Rheumy ne t time you see one 👍