PMRGCA idiots guide (by which I mean simple to read and understand !)

[Phoenix51]

I am looking for a short/succinct ( non academic information leaflet / source that I can signpost friends and relatives to that summarises GCA and PMR, rather than two separate ones. I find it hard to describe my conditions and the effects of the medications. I also find it difficult when people say ‘ I read about your condition, you should be better by now’ or ‘it goes away, you won’t be like this for long’. I am fully aware ( mainly through reading the stories of posters on this site) that GCA and PMR can unfortunately remain for many years. it is my hope that I can find a ‘lay persons’ guide that reinforces/explains this. Any suggestions? 🌈

[DorsetLady PMRGCAuk volunteer]

Have a look at this - if it’s any good for you I can send you a word copy to cut and paste accordingly.Just message (tap picture above) me with your email address - not on open forum.

healthunlocked.com/pmrgcauk...

[Phoenix51 in reply to DorsetLady]

This is really helpful, thank you .. I remember reading this when I first joined PMRGCAUK, problem is my brain function is at 20% at best and I now have a brain like Dory. I’ll message you for the word copy. Thank you

[Phoenix51 in reply to DorsetLady]

Thank you for your help much appreciated

[Fatsdomino in reply to DorsetLady]

Will send my email for this article please.

[piglette]

Why do your friends think it should have gone away by now? Did they read it somewhere? Quite frankly I am not sure any of my friends are that keen on reading about any illnesses I may have unless they had it themselves!

[Phoenix51 in reply to piglette]

I think it was the nhs website. To be fair most of my family and friends are very supportive and now understand my conditions (and limitations) it’s just I feel under pressure by some to ‘bounce back’ to full health and although I know I shouldn’t have to justify myself I would just like to have something that explains how PMRGCA can affect lives and also that contrary to some online descriptions ( “pmr snd GCA are self limiting and with medication can go within 2 years) the effects of both conditions together with medications can last a lot longer! Thanks

[piglette in reply to Phoenix51]

I have discovered over my lifetime that people are not really interested in other people’s illnesses. In fact I am not sure doctors are that sympathetic either! You can be ill for a few days with a cold or somesuch and then you leap out of it.

[Hidden in reply to piglette]

I totally agree with you but to my horror I find myself explaining to complete strangers my condition!

[piglette in reply to Hidden]

I agree, you then feel such an idiot and complainer trying to tell someone as their eyes cloud over with boredom!

[Devoid in reply to Phoenix51]

The nhs website is very misleading,gives a positive slant that’s verging on a fairytale!! Good luck

[Phoenix51 in reply to Devoid]

Yes, I agree, it’s misleading and unfortunately is where many will go to first for their information. Even the Vasculitis UK website states ( with ref to PMR)” In most cases the symptoms will cease within one month to one year. The steroids can then be discontinued”

[PMRpro Ambassador in reply to Phoenix51]

VasculitisUK don't take the slightest interest in patients with PMR as their line is that it isn't a vasculitis, just found alongside GCA which is. And as is painfully obvious from that statement, they don't take note of up-to-date work showing they are linked. It is backed up by the patronising attitude they take as well.

[jinasc in reply to PMRpro]

Too true as I found out years ago before it changed its name.

[AmberAliona in reply to piglette]

I get the same from many friends. It doesn’t help does it? Keep strong. X

[Phoenix51]

I think folks tend to be more sympathetic if it’s an illness they can see evidence of 🤣such as broken bones etc. Same with disability often little allowance made for ASD, ADHD, mental health conditions etc. my motto is always to be kind, you never know what battles others may be fighting.

[PMRpro Ambassador]

Does this help?

healthunlocked.com/pmrgcauk...

[Phoenix51 in reply to PMRpro]

Thank you very much, ideal.

[Rugger]

The Charity pmrgca.org.uk have leaflets that you can request. They are useful for friends and relatives as well as doctors' waiting rooms and other community venues - when places open up again!

Here is just one leaflet from the website pmrgca.org.uk/wp-content/up...

[Phoenix51 in reply to Rugger]

With regard to PMR, the leaflet says ‘Symptoms that are worse early in the morning but ease during the day’. Does anyone have symptoms throughout the day? Sometimes my pain is worse in the morning but sometimes it doesn’t ease as the day progresses and it can last all day. Other times I’m ok in the morning and worse in the afternoon. Just curious if, as the leaflet suggests, most PmR symptoms manifest in the morning. Thanks

[PMRpro Ambassador in reply to Phoenix51]

It's something I have fought for ages - it isn't morning stiffness/pain. It can be anytime, all the time.

The point of "morning stiffness" is how long it lasts - more than 3/4 hour suggests PMR, less suggests osteoarthritis.

[Phoenix51 in reply to PMRpro]

Thanks for clarifying, appreciate this.

[Purplecrow]

As I recall, Kate Gilbert's book was fairly straight forward and simple to understand. .....and, frankly I don't feel any obligation to explain or justify PMR to anyone. Just as I would not feel obligated to defend myself if I had diabetes, or any of the dozens of other "invisible" illnesses.

Just for the record...My PMR was diagnosed nearly 8 years ago, and I still find it difficult to succinctly describe to the curious.

Kind regards, Jerri

[Phoenix51]

Thank you, that’s great 👍