Please read the leaflet and then do the survey

[zoe69]

The most common medication for those that have vasculitis is steroids (prednisolone).

Vasculitis UK and other patient organisations has worked closely with the endocrinology and rheumatology departments of the NHS Leeds Hospital in order to create a leaflet with advice for patients on long term steroid treatment.

Now we need your input to finalise it. Please take the time to read the leaflet and the take part on the survey (it is anonymous). Your opinion is valuable.

If it is necessary the leaflet will be revised on 1st June 2020 and then we will share the final version.

Leaflet:

leedsth.nhs.uk/assets/be1c3...

Survey:

forms.gle/ia7BFq4KvLCBEn8y9

[Theidealistrealist]

Thanks for this, very interesting... I have thought I may have some adrenal fatigue recently so very relevant...the only thing I have thought is I haven't heard anything about this from my own rheumatology dept or doctor...the guidance is very clear, thank you

[Devoid]

The survey stopped part way through on the same page and would not complete

[zoe69 Administrator Volunteer Vasculitis UK in reply to Devoid]

I am sorry, I will forward this to the team doing this project. Is there any feedback you want me to forward?

[Devoid in reply to zoe69]

Not as such , but other than on this site no one has discussed this with me which is quite concerning, it’s good to see more work being done

[Phoenix51]

This is great .. I was alerted to this link by PMRpro on the PMRGCA community. The booklet is so helpful and informative. I am newly diagnosed and can’t believe nothing like this has been done before, it’s so valuable and I’d like to thank anyone involved for their efforts.

[ludo]

Survey completed.

Many thanks Zoe for this information. I had no idea of sick day rules for prednisolone and I've been on it for 13 years!

I have had the synachren test and apparently I'm boarder line. So not sure if these rules apply to me or if it's for everyone on prednisolone regardless do you happen to know?

[zoe69 Administrator Volunteer Vasculitis UK in reply to ludo]

I will forward your question and come back to you.

[BronteM]

This is excellent. Wish I’d been given it a long time ago. I did get to see a nurse practioner in the endocrinology department, and she was very helpful and reassuring, but a leaflet to take away would have been a great help. I do now have an emergency supply of steroids, and did manage to inject an orange plastic block. Whether I could inject myself is another matter!

[ludo]

Many thanks Zoe. I await your reply with interest

[Chipper03]

Thanks very much for this, really extremely informative! Survey completed.

I was diagnosed with EGPA 11 years ago after many years of symptoms. I was under a rheumatologist at first but then, about 9 years ago, I was moved to a respiratory consultant. It would be wonderful if other specialists could have a leaflet like this to hand out, not only rheumatology.

And last year I had major surgery for bowel cancer, and when I asked if I should have increased steroids at the time, I was told no, it would probably be ok.....I’m on 5 mg a day now, got down to 5mg about 7 years ago. I took a much longer time than average to recover from the cancer op and now wonder if this was a factor in that.

When we get the final version of the leaflet, I plan to print it off to take with me if I have to go to hospital, for instance, if I get covid 19.

[Galaxy2]

Thanks Zoe

That was a really interesting read, all news to me too as I have never been told to increase steroids with an infection. I've been on predisolone for nearly 10 years, even when I've been in hospital on IV antibiotics I haven't had my steroids increased or been told to at home whilst on antibiotics.

I will look forward to the final version and thanks all for your efforts with it