Not bad considering! Or is it? Who knows! Does not in his opinion think that my GCA is now active & the shoulder/back of head burning & stiffness is a sign of PMR! Wants to get that pred dose down. Believes the symptoms are cervical spondylosis. May well be right or not! Usual poke in the eye with alcohol! Gave up the cigs. 35 years ago so I got a tick there!! "Could I do better" as school reports suggested? Or................!
Rheum's Report Feedback.: Not bad considering! Or... - PMRGCAuk
Rheum's Report Feedback.
28 Replies
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PMRproAmbassador
And um - HOW does he assess the GCA is inactive?
in reply to PMRpro
God knows, it must be a medical gift! Lots of years experience I suppose! The markers seem ok so stop pissing about was put subtly! Also it's interesting to hear the word "weaning" off steroids with even the best!
Of course the numbers look good. You are on pred. But a SLOW reduction...
in reply to PMRpro
YES. Trying 1.25mg/month taper now. Been on 13.75 for a week. No jaw ache yet! "Deep Heat" rub on my shoulders & neck as a burning distraction.
in reply to
The burning or tingling is a good distraction as is a warm wheat pack now it’s not so hot, weather wise!
in reply to
Thanks. Do you microwave a wheat pack or what?
in reply to
Yes, but don’t exceed the timings, as it smells like burnt popcorn, l know this because l did it! 😱
in reply to
I rather like that smell! Reminds me of the flicks!
It isn't unknown for them to go up in flames!
I went back to your old posts to see how long you had, had GCA so that I could give you my qualified medical opinion ( ha ha). I got lost in your descriptions of nature. What lovely posts you write illustrated with your wife’s cheering photographs.
I have Cervical Spondylosis and get a pain at the back of my head like I have been thwacked by a baseball bat - but it does respond to painkillers and altering my position and turning off my devices. Unlike PMR that only retreats whimpering when confronted with Pred.
I think I would choose to be comforted by his opinion and start the long trek down clutching the paracetamol. Good luck. Happy Autumnal walks, the air has a bit of pepper in it, Pepperdoggie.
in reply to SheffieldJane
You have more than your fair share of medical ailments Jane. Thanks for your experience of CS. Do you get a burning & gritty grinding sensation as well? Late May 2017 was when I started the GCA" BIg Dipper" ride. Around 15mg I get some symptoms returning & have been back to 20 many times. He may well be right but as PMRpro says he doesn't know really! Not too keen on the painkillers I'll just have to see how it goes! Using "Deep Heat" rub as a distraction at the moment. Ha! Smell like a football changing room!!
For starters I could certainly improve my posture when hunched over my laptopl. Autumnal smells emerging now of damp earth & rotting leaves . Lots of freebie blackberries on my sojourns along the canal. September nostalgia. Always a new term or job for me! ATB
in reply to
Just a thought could some of your aches be down to walking and gardening? I am trying to get back to 'normal' sorting out my lottie and garden, am putting the extra aches down to building up my muscles. Ankles, feet, wrists, hands aches are always there, now a lump has come up on my ankle, never mind. Your garden is really colourful, are the coreopsis? Which canal do you walk, mines the Lancaster canal.
in reply to
Quite possibly aches are due to the physical stuff Chris,but this is more burning shoulders & back of the neck stiffness. I am better being on the move & when I upped the pred. it goes! Muscles definitely suffer with the pred. & the GCA. The plants are Rudbeckia grown from seed, not really perennial these type. They do look similar to some Coreopsis. I walk the Birmingham- Worcester canal. Mainly the Edgbaston/ Alvechurch/ Tardebigge bit. Lovely country & a decent towpath. Been watching the construction of a new marina over the past year. An incredible amount of soil removed,it's almost completed. 50 odd narrowboat spaces. The Canada geese have already moved in! The beauty of this section is that it's flat & there are no locks all the way. Biggest flight in England starts at Tardebigge. Happy Gardening.
oldtrucker in reply to
Hi this brings back memories of walking my kids along the canal from Gas Street to Kings Norton in the early 70's. Must have done some good as the eldest son {ex RN} now lives and works on the canals. Where is the new marina???
in reply to oldtrucker
Hi. The marina is at the back of the" Crown Inn" Witheybed Green near Alvechurch. A natural clay area it's been amazing to watch the project develop over the year. Canal boating seems to be getting very popular! Maybe the series on the tele!
Saw this
medicalnewstoday.com/articl...
and thought you might be interested.
in reply to PMRpro
Thanks.
SheffieldJane in reply to
Sorry I have just noticed your post in my overflowing in-box. Yes I do get a gritty,grinding sensation in my neck at times - not burning - but I can hear it crackle. There is significant wear and tear according to my XRays. It seems better these days.
PMRPro is invariably right. GCA is a big disease. I would carry on with a very slow and small taper being guided by symptoms. Pred has little impact on my arthritic pain.
I love Autumn. I’ve got a big, fluffy, silly looking fledgling Robin in my garden. He keeps staring at me, not at all nervous. His red breast is the colour of the inside of a tomato. I love that nostalgic nip in the air.
in reply to SheffieldJane
Thanks. I definitely have a burning sensation too. Extra pred does seem to reduce this! Who knows! It could be something else as well. I will request an Xray if it persists. ATB
Hang in there Peppers,at least it seems your Doc is making some breakthroughs. So how will he treat your cervical spondylosis? With more Pred or is there a plan. All the best
in reply to groovyguy
No idea! Are there other options other than painkillers! Hey! I'm just keeping my eye on that GCA! Thanks to DL & others experienced here. ATB
in reply to groovyguy
Just caught up with your previous post & see that you have been diagnosed with another neck problem & are reducing the pred. If I hit problems on my reduction I shall be back at the docs. asking for an X ray!
groovyguy in reply to
Gday Peppers, yes they are reckoning at this stage to be the same as yours as cervical spon. and over the last 4 days ive been taking 5omg of lyrica per day and something is happening as my neck and shoulder pain has decreased and ive came down from 25 mg pred to 22. early days and i will keep you posted
in reply to groovyguy
OK. Good luck on the way down.
I did nearly leave a comment - quite a comprehensive one but just as I was putting the finishing touches to it, there it was gone!!
I started off by saying what a lift your photo of that lovely Autumn border gave me. Gorgeous!
in reply to mega
Thank you.
Infuriating when that happens 😡 (blog or long reply disappearing into the unknown). I often prepare things in/on Notebook or similar, then copy & paste. Still been known to 'fluff' it up though 😰 (that's the clean version)
Ah well, some good came from it. Your reply gave me a much-needed chuckle.
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