Handouts for Drs appt

[bunnymom]

Good morning

I go to see my rheumy for the second time on Monday. I am looking for any links to information that might be good to take him. Is there any place on this site that has such a spot, I couldn't find it if so.

Thanks, bunnymom

[PMRpro Ambassador]

No there isn't as far as I know. This is a link to the sources we find useful on another, the original, PMRGCA forum:

patient.info/forums/discuss...

There are links to medical papers and other forums/charity websites. The NE of England and Scottish charity websites have a lot of useful medical information - including the lecture given in September at a Glasgow PMRGCA meeting about the GCA guidelines to be published soon.

Be careful though - some doctors get very iffy about patients doing their own research! Even when it comes from respected and established charities in the field

[bunnymom in reply to PMRpro]

Ok. i printed the Bristol paper and will keep it in my purse I just want him to know I am thoughtful in how I am doing reductions. I am back to 12.5 after going up to 17 for 3 days. Still stiff in the morning and pain in the evening but I don't want to be at 17 when I go in Monday so trying to take it easy and see if all continues to calm down. I don't see how most people, according to what I just read are able to be a 10 very early on and stay there. That sure has not been my experience. I think he is going to want to get me on methotrexate. He mentioned it at my first visit. Guess I will see. Thanks.

[PMRpro Ambassador in reply to bunnymom]

No - that is the one criticism I have about the suggested reduction. I think that first bit is too fast - though if you assume that many patients will find that their longer term dose is going to be 10mg or less, it is probably easier to get from 15 to 10 within a short time than once you have been at 15 or more for a while.

The first time I was given pred I had 2 weeks each of 15/10/5 mg and stop. At 15 I was fantastic, at 10 I didn't really notice any difference, 5mg was still all good. Within 6 hours of missing the first 5mg dose I was in agony, as bad if not worse than before pred. I didn't manage to reduce below 10mg for years - and I'm sure that flare and the messing about it led to (the rheumy didn't believe it was PMR) made it all so much more difficult.

However - it is much slower than many of the suggested approaches, especially from 10mg. The "Dead slow and nearly stop" reduction that we are always on about has a VERY low flare rate - it more often than not only happens when you get to the lowest dose you are looking for and most people who have tried it after failing to reduce well in the past find they get to a much lower dose.

[HeronNS]

Just a comment on the Bristol paper and its suggested reduction protocol. (Please note I'm only referring to PMR not GCA.) I think there are two things wrong with the 15 to 10 reduction. First the steps down from 15 to 10 are too big. And then staying at 10 for a whole year may be a good idea for some patients but I bet most patients would do better to start reducing much sooner than that, although at the slow rate DSNS suggests. In my experience this has worked well following several weeks at 15: 1 mg steps down for the first 5 reductions then introduction of DSNS, which I tweaked, often by using .5 mg reductions, to allow me to reduce (apparently successfully) to 2.5 in approximately 18 months. Following Bristol paper I'd still be at something like 8 mg. And although drops of 1 mg at a time might be okay at that level I know after a couple of months like that it could become very difficult to drop by 1 mg all at once, so even then DSNS would be useful.

[DevonMichael]

Any questions you have are worth jotting down. I did this (like what action should I take if I experience a flare?). The rheumatologist was very good going through my question list. When I asked at the beginning of the consultation if we could do my questions at the end, he said lets start with them! In the letter after the consultation which went to my GP and he arranged for me to have a copy, he commended me for being proactive in joining support websites and researching GCA. I read Kate Gilbert's book "PMR and GCA a survival guide 2nd edition" whilst the "Oxford Rheumatology Library PMR and GCA" by Prof Dasgupta proved to clinically technical so I donated to the hospital rheumatology library! I am trying to learn all I can because until 20 June 2016 I had never heard of GCA so started from a zero base!

Good luck with the consultation try and get all you need from that time slot.

[jinasc]

pmr-gca-northeast.org.uk

[bunnymom]

Thank you all as always!