Rhummy plan in tatters! Update GCA: Well according... - PMRGCAuk

PMRGCAuk

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Rhummy plan in tatters! Update GCA

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Well according to the master plan I should be on 10mg starting today. No way is this achievable after hitting the nlggling pain buffers at 15mg never mind the planned 12.5mg 4 weeks ago. Back to 20 /17.5mg & the jaw & head are settling down. Still have burning shoulders, stiff neck & buffalo hump though! May have overdone the gardening somewhat but I want to put it to bed before Winter sets in. So much of my self esteem comes from doing the physical stuff. (I know. I know!!!) Gained 13 pound since the start of pred. Guess the chicken,bacon,Danish blue & white wine diet is not working for me! Must do better on that one. Otherwise it's a wedge & hula hoop sown into the pants with flexible bracers! Thank you all for your advice & contributions to the forum. It's a great comfort. ATB

35 Replies

I think that in order for a loosely held master plan to work it needs to be controlled by you. You've endured steep reductions in the past, your body needs time to settle down. Then a really gentle taper, pausing at the first sign of trouble.

Well at least you've bedded the garden down for the winter and that's a satisfying thought even if you feel that you've done several rounds with Mike Tyson.

I understand about self esteem and increased happiness that stems from physical activity. I suggest that you invest in a fitbit and start challenging yourself to achieve more steps each week on walks on the flat. Start small, set a goal and stick to it. This will keep your body ready for when you recover. It's oddly addictive.

I love the sound of your diet, well that's it really, I love the sound of your diet and I don't love the sound of me stating the obvious - especially as I say s*d it often with my own diet.

Take care!

SheffieldJane I like your advice re Fitbit, think I'll have to give that a try. My legs seem to have tuned to jelly recently and when my granddaughter, a small 3 year old, wants me to carry her sometimes, I feel like I'm carrying a big bag of coal 😌 must try your suggestion. More good advice from this great forum

I envy your big bag of coal, I really do. Mine is on the other side of the world. What I wouldn't give to hold him.

Walking will strengthen those weakened muscles. The sunny Autumn days are lovely for a wander amongst the trees.

We are actually going on 'a wander amongst the trees' tonight. Enchanted forest walk with trees all pretty and lit up. Would share the link but that's beyond me. Should be fun with the troops and that bag of coal. Sorry yours is so far away 😑

That sounds amazing Hollyseden, just my cup of tea!

PMRpro
PMRproAmbassador in reply to Hollyseden

Am I hallucinating or are you in Scotland? My nephew and his girlfriend went to one recently - not sure where it was though, Pitlochry I think.

If so - enchantedforest.org.uk/

But now I think of it, it can't be, it's finished.

Hollyseden
Hollyseden in reply to PMRpro

Fear not, you are not hallucinating.😊 Yes I'm in Scotland, I live halfway between Glasgow and Edinburgh. The one we are going to us in Balfron. Summit to the Pitlochry one but smaller I think. Looking forward to it 👏👏

'Similar' to Pitlochry. Predictive text be damned!

PMRpro
PMRproAmbassador in reply to Hollyseden

By Forth Valley????? You, not Balfron ;-)

Hollyseden
Hollyseden in reply to PMRpro

Nearer the Kelvin Valley, I live in Cumbernauld.

PMRpro
PMRproAmbassador in reply to Hollyseden

OK - no I know someone is near Forth Valley hospital - I lose track... ;-)

hya2cynth
hya2cynth in reply to Hollyseden

Theres one at the Helix at the beginning of Dec I think.

Holly, if you have an iPhone, there are several apps for ‘steps’ for free. I also have a free app called ‘map my walk’ which I use when I’m dog walking, gives distance and speed. I’ve set myself a goal of ten miles a week on it, just cracked it this week after eleven weeks 😎

I expect there are similar for androids.

I do have map my walk on phone, but usually only use it when on holiday and doing 'proper' walks. Haven't used that for a while. Must dust it off. Thanks for the reminder Soraya

The best laid schemes o' mice an' men

Gang aft a-gley, [often go awry]

An' lea'e us nought but grief an' pain,

For promised joy.

~Robert Burns

Are you Scottish Soraya?

I was raised in Edinburgh, my dad was Scottish. He would often quote Burns. How apt.

No Jane. From Leicestershire. Now Kent. Bit Irish. Bit Italian. Mostly mongrel 😉

Just thought it appropriate for the grand schemes of rheumies. The plan from my rheumie didn’t work either, but she at least said it might not. I might quote Rabbie to her when I see her in December.

O wad some Power the gift tae gie us to see oursel's as ithers see us.

To all Rheumatologist out there and GPs.

Robert Burns.

Well done with your 10 miles Soraya!

Up to 13 miles now!!!

5 vet visits, walked there and back each time. Would you believe my dog has Cushings! We’re comparing notes, and there’s a contest as to who has the biggest appetite!

Dogs are so empathic bless them!

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

Rheumy plan in tatters - nothing new there then!

That’s because they are generally unrealistic (albeit following the guidelines) and don’t take “life” into account!

My original GP’s plan, taken from the GCA guidelines, went out the window after about 6 months. I think it had me down to zero in about 2 years, in fact it turned out to be 4.5 yrs - and that with no flares!

I do note the guidelines now say 2-3yrs on steroids, which is a slight improvement, but still a bit too ambitious for most.

As I said the other day, they have comments about dealing with relapses, so why don’t they look at things logically and ask themselves why most people have relapses - Answer: because the tapering plan is too quick!

I appreciate that some patients may relapse for other reasons, but we all know the overriding reason!

PMRpro
PMRproAmbassador

Chicken, bacon, blue cheese and white wine feature in my diet - all non-carb! But maybe you are eating too much stuffing, butties and crackers along with them?

As for realism? Don't think it features in the average rheumy vocabulary...

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Catching up. Thank you. Should n't have said Danish. Just shows how we are brainwashed with branding stuff in all forms.

Chicken, bacon, Danish Blue and white wine sounds a good to me, although I think I will swap the white wine for red wine and the Danish Blue with Roquefort. The nurse told me today I should eat lots of protein.

Hidden
Hidden in reply to piglette

I like the sound of that too piglette. Thanks for the encouragement.

There is nothing quite as uplifting as a tidy garden. Sometimes we just have to go beyond what we know to do to have some kind of life.🌹

Hidden
Hidden in reply to bunnymom

Hi. bunnymom. For myself it's not about tidy it's about what you enjoy & love. Is this a spanking!

PMRpro
PMRproAmbassador in reply to Hidden

I had a large patch at the bottom of my garden that was untouched by human hand - heaven for the insects and other wildlife. Our village has beds that are planted at the beginning of the season with meadow flowers and not touched until winter. I can think of many uplifting things besides a tidy garden ...

BonnyQuine
BonnyQuine in reply to PMRpro

Hear hear, PMRpro. Like the sound of your village. Our insects and wildlife need all the help they can get, these days.

Hidden
Hidden in reply to PMRpro

'Untouched by human hand'. Certainly have a lot of gardens like that around here! It's all the rage! I'll send you some of our slugs & vine weevil to add to your joy. Only joking. I am a nature warrior. Or should that be worrier! ATB

PMRpro
PMRproAmbassador in reply to Hidden

I do have to confess that in that last garden the previous incumbent had had a wonderful crop of ground elder - she obviously had had no more idea about gardening than she did about being a housewife! And yes - I am being judgemental!!!

However - I was to be found sitting on the lawn painting the ground elder leaves with a very effective weeedkiller and then tracking back to find all the rhizomes. I succeeded in ridding the garden of the vile stuff!

PMRpro
PMRproAmbassador in reply to Hidden

I do have to confess that in that last garden the previous incumbent had had a wonderful crop of ground elder - she obviously had had no more idea about gardening than she did about being a housewife! And yes - I am being judgemental!!!

However - I was to be found sitting on the lawn painting the ground elder leaves with a very effective weeedkiller and then tracking back to find all the rhizomes. I succeeded in ridding the garden of the vile stuff!

bunnymom
bunnymom in reply to Hidden

Oh no! I have areas that I clean up (vegetables for disease purposes) and perrenials that I let go for the birds and bugs. We all find our own pleasures.

mega
mega in reply to bunnymom

And (almost) nothing like one you can no longer manage. I loved gardening but after my husband died decided to 'downsize' to an extremely convenient flat with an unusually large terrace. For the first few years it happily occupied my change to tub gardening and was much admired. With the onset of GCA though, I cannot manage even that and it looks like a wasteland.

GCA has made me miss out on so many things.

Oh that is very hard indeed. I hope your GCA runs its course and you can reclaim what you love. xxx

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