I asked this question in the VUK Facebook group and got lots of interesting replies so thought I would post here as well!
When you were started on treatment ( Rituximab, Cyclo, prednisolone, DMARDS etc ) were you given an information leaflet from your Consultant? If so was it geared to Rheumatoid Arthritis or another Rheumatological condition or was it specific to Vasculitis?
Anyone not given any information at all?
Thank you. 😀
I was given nothing for prednisolone but an Arthritis UK leaflet for methotrexate. I'd be very interested in helping with patient information for managing medication and lifestyle changes that can help people feel more in control of the side effects of drug effects if you are looking into this. I think there is huge scope for an NHS leaflet for patients on prednisolone, for example (or maybe there is one and I haven't come across it).
That's interesting CloudGazer, I am not sure that anyone is given written information on prednisolone. I actually didn't include pred in my original post on Facebook but did here. I think out of all the drugs we take its the one that who's side effects cause the most problems.
The information booklets are expensive to produce but we did wonder about producing PDF " sheets " on the medications which could be downloaded from the VUK website. I would be interested in including practical tips such as do's and dont's from people's experience with the medications eg take with food, use a sunscreen, get your bloods checked regularly, etc.
There is a thread on weight gain and prednisolone on the Facebook group at the moment as well. We do have a parallel Vasculitis Healthy Eaters group on Facebook where we share recipes and diet tips etc as it's an issue for so many.
I am with you, I like to be in control of everything that I possibly can with this illness and do as much as I can with lifestyle changes, I realise that's it's not always easy though.
It was a decision to have cyclophosphamide was instant so no leaflet, but the rheumatologist was very informative. Then when being put on azathiothrine an arthritis uk leaflet was given. I myself picked up a leaflet on prednisolone, then went on to buy a book about living on prednisolone which was very helpful.
Thanks Cloe.
Hi Cloe
Would it be possible to have the title/author of the living with prednisolone book? It sounds good.
Hi, so sorry for my late reply, I didn't see it!! 
It's
Coping with prednisolone and other cortisone related medicines.
By eugenia zuckerman
And Julie ingelfinger
One of them suffers from a rare lung disease and would die without prednisone and her sisters a doctor so they collaborated the book together.
Again so sorry for the late reply.
Chloe
The only information that I was given was the Arthritis UK leaflet for Methotrexate that has already been mentioned. After about six months I was also told that my GP practice now had a MTX nurse who would monitor and advise me from then on. But I changed to cyclophosphamide where the only I nformation was just verbal, though I did have to sign a form to say that I understood about side effects. When that didn't work I went on to rituximab and don't remember being told a lot about that either.
Prednisone- no written information for that, though the consultant told me that life on 60mg a day wasn't going to be much fun, and my GP had more (verbal) information.
I'm science trained and I found the lack of information hard....the things that rescued me were:
The gift of an iPad so that I could get onto the Internet even when I was a soggy heap on the sofa
Finding an address for the West Midlands support group and talking to Margaret Gentle, then hearing about John and Susan Mills
This website
A rather American book on kindle "I'm sick and tired of being sick and tired", but easy to identify with.
The idea of PDF information sheets is excellent and I think they would really help a lot of people.
Thanks BronteM, I had envisaged the PDF's being an " extra " to the ARUK booklets, looking at things from a Vasculitis angle. Hopefully we can include what has worked for people with regards to mitigating side effects etc.
It would be great to have something written down, specific to Vasculitis, that a patient can go back to again and again. After my first diagnosis, my brain disappeared and I remember very little of the months that I spent on Methotrexate! The cyclo and rituximab have been much better, but everyone who gets stuck on steroids still has to cope with 'pred brain' especially when they are on high doses. So I may well have been given more information than I think I was, but it didn't stick as it wasn't written down....
To be completely honest- I have had so much information, on so many 'things'- the trouble with a complex condition-that I really cannot remember quite what related to what. If this makes any sense?
Sorry to be, a little, unhelpful here.
AndrewT
I think we all have different " informational " needs Andrew! There does seem to be a gap in the market for specific Vasculitis related info though. 😀
I wasn't given any written information about prednisolone or Cyclo which happened all in a rush 10mths later.
When I was started on prednisone and cycolo my rehume gave such lot info about the side effects of these medications that I got streesed.I was thinking that there is no use to get the treatment.
Nothing for my first treatment which is MMF/preds, but I have been given a leaflet for rituximab and it is arthritis focused.
I was given no info at all, written or verbal, on the cyclophosphomide, azathioprine or prednisolone that I have been taking. I've had to research everything myself on the internet. The only support from my consultant was an 'apology' for the fact that the high dose pred as made me fat and a promise that we'll start reducing the dose as soon as possible.
I live in Germany and all prescription medicines come with leaflets, pages of information on how and when to take it, what not to mix it with, when to call a doctor and any and all possible side effects etc. In fact, my rheumatologist gave me a quick run-down and asked me not to read the stuff if I can help it. But of course I did. When I was started on rituximab, my family GP (who is my first call medical person) printed out a fact sheet from the rheumatology society and we read it together, deciding on when I should have lab tests and what to watch out for etc.
All my meds, including pred, come with detailed information leaflets about side-effects, how to take it, what not to take at the same time (including some types of food). I had to ask for the remsima one as it was done in hospital but the nurse handed it over happily. Didn't get any information leaflets for all the IV antibiotics I had last month, though, but there wasn't a lot of choice about taking them!
Nothing provided (2007)
Over in the US, we had to research everything on our own about the side effects of prednisone, cytoxan, imuran, dapsone etc. not given a thing except from the pharmacist. Something needs to be done to create more awareness of auto-immune disease. So thank you for all YOU are doing. Feel like I need to move over by you all to get sound treatment!
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