A wake up call

[Groggrim]

Hello, I was browsing round the forum and I found a thread from a year ago that piqued my interest so I read through it. A lot of the points made caused me to think. My approach to PMR and Prednisolone has been incorrect and I now see this for what it is. I need a new approach and will be contacting my GP for an appointment once back from our daughter's next week. Meanwhile I thank all the knowledgeable and caring people here who have shared with me and I apologise for being difficult at times. GG.

[piglette]

It is amazing what you find looking back. I seemed to be a lot more articulate in the past I reckon!

[Jackoh in reply to piglette]

Yes I always feel that way Piglette. I do think didI really write that? - seems to be too concise and I’ve remembered all the words I wanted to use!! 💐

[piglette in reply to Jackoh]

I am sometimes quite impressed how articulate I used to be in the good old days! Rather than the garbled individual I seem to be now.

[Jackoh in reply to piglette]

I can really associate with that. I also dread introducing folk to other folk. I sometimes can’t remember anybody’s name! 😂

[piglette in reply to Jackoh]

I seem to have forgotten everyone’s name. Mind you I was pretty bad when I was 20. Now my memory for names is virtually non existant.

[Groggrim]

I had my bloods taken this morning, appointment with endo week on Monday. Hopefully some useful pointers, but for sound advice can't beat the information here.

[Sunburst001]

I’m curious- what did you discover and what might you do differently now?🌺☘️🌺

[SallyBridport]

please explain! What was your incorrect approach?

[Zebedee44]

Do tell us more about your approach being incorrect! We might all learn something! Are you now more assured that PMR was the correct diagnosis at the start. You seem to have had a lot of conflicting thoughts since last August and it’s quite normal to be confused and suspicious about this strange life altering condition. Mental resistance to it is not going to get it to go away, you have to learn to live with it, and you seem to be doing that just fine.

[Groggrim]

Good morning, thank you for your messages. To put it briefly I have learned from this forum that, while PMR and Pred is never going to be a friend, neither does it have to be an enemy, just a constant companion for now.. I have been fighting it for 7 months, mostly due to the GP telling me I 'had to be off Pred in a few months'. I am happy to say he has since mellowed his approach.I have always struggled to be in control but I have learned this is not something I can have control of.

What I plan to do differently is to allow it to do it's thing and to treat it according, respecting it without letting it totally run my life.

Thank you for all the wise counsel that is offered 💐

[SnazzyD in reply to Groggrim]

Sounds good. I regarded it as a partnership with my body that was in such distress.

[Zappata in reply to Groggrim]

Take your own time. I am convinced that the rheumy trying to get me off pred almost as soon as I started is the reason I am still on it 5 years later

[PMRpro Ambassador in reply to Zappata]

Anecdotally - patients who are not diagnosed soon or badly managed so they flare do seem to take longer.

[Zappata in reply to PMRpro]

Certainly true in my case. Fear of being on pred has totally distorted my journey

[PMRpro Ambassador in reply to Zappata]

I had had 5 years of PMR with no pred - within 6 hours of 15mg pred I was over 70% improved. I have NEVER been afraid of pred - 5 years of disability and pain made it worth it for me and I have always taken what I need. If it kills me off a few years early, at least life has been better worth living.

[Zappata in reply to PMRpro]

Yes I feel like that now too. Wish I'd known at the beginning 😉

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Agree, what's the point of living to 90 or 100 if the last 20 years have no QOL...

[Groggrim in reply to Zappata]

😒

[Pixix]

Another change in thoughts came to me quite quickly after being diagnosed, which i will share with you! There are many worse diseases to have, be grateful for having PMR, which can be controlled by drugs, goes into remission, & doesn’t last a lifetime. It’s a self limiting disease. It’s really not that complex, either. Yes, the drug has side effects, but others do, too, as I have been up to taking more than 30 pills a day, & seem to get them all!! I have now got 12 diagnosed diseases, & PMR is one of my favourites. After five years I am on just 1mg of steroids, & could be free soon. The other 11 are lifelong, & painful, & some are physically disabling. And I’m so lucky none are terminal. Many people on this forum have dreadful diseases (worse than mine). With PMR you can achieve pain free, or at least a low level of pain. So don’t fight against it. Go with it. Don’t expect to run a marathon. But let it go into the background of your life, don’t let it define all your days, & thoughts. Don’t overthink it! Once you’ve read enough about it, let it go, enjoy the sunshine!! Just my thoughts…

[PMRpro Ambassador in reply to Pixix]

Above all - DO NOT OVERTHINK IT!!!! Such good advice!

[Pixix in reply to PMRpro]

Didnt mean to interrupt your holiday! Sometimes I think it’s so simple…take the steroids, do what you can, but turn down invites if necessary, miss a holiday, live within your energy bounds. But don’t stress, it can’t help! Read the forum, it’s all there. When your body is OK, taper. It’s taken me 5 years, & 3 trips from 5mg to 1mg! And I’m not free yet. But to know I will be free someday, that’s huge, & truly optimistic! Hope you’re having a wonderful holiday, the weather has been good down here! S xx

[PMRpro Ambassador in reply to Pixix]

Not interupting - I have been dipping in and out when I had time and access to wifi. At the daughter in Whitby now - good wifi, both out at work, daytime TV or empty the Inbox!!!

Well there is good and good - for a start I'm in the north. It has its own rules!! Lots of sunshine - but a lazy wind, goes through, not round. It sure as hell didn't get to 19C up here!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

daytime TV or empty the Inbox!!!

No contest then... daytime TV - not on your Nelly!

[Pixix in reply to PMRpro]

What’s ’daytime TV’? Am I missing out here? Apart from rugby matches I don’t think we have coverage here until about 7pm!! Yes, must admit it’s different here in far south…Sun is out again, but there is a breeze, & rain due overnight (which is good as I’m having to fill birdbaths & water bulb pots…& I’m still on crutches…week 12, & tend to sp,ish water over myself so easily! Whitby is lovely, only been once, but I did like it…&, of course, we had fish & chips! I wasn’t sure if you were in the van or not! We’ve just had to sell our motorhome, I’m just not well enough to use it anymore, & David would like a smaller van now!! Happy holidays, S xx

[PMRpro Ambassador in reply to Pixix]

I am in the van - slept in it at Dunkirk, nice and cosy. But at the daughter's now.

[Pixix in reply to PMRpro]

Great! That’s a lovely mixture of travel & family! S x

[LemonZest11 in reply to PMRpro]

Ah Whitby. I taught at St Hilda's Anglican School for Girls and it is named after the abbess of Whitby, Hild. I would love to go there, the history is rich and the stories about Hilda are fascinating.

[August7 in reply to PMRpro]

Nor in the far Southwest…mizzle, mizzle, rain and drizzle. Soggy PMR personage am moi!🙃

[DorsetLady PMRGCAuk volunteer in reply to August7]

I thought the usual advice in Cornwall was if it’s raining on one coast cost -pop over to the other one it will be fine there! Or is that just to pacify the tourists😳

[August7 in reply to DorsetLady]

As far as today and yesterday is concerned afraid so….bit like Poldark really lurking around….☺️

[DorsetLady PMRGCAuk volunteer in reply to August7]

Atmospheric I think is the buzzword! Or maybe not!