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PMRGCAuk
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Update

Saw my rheumy this week for an update, been suffering a bit ever since I got down to 12mg of pred and foolishly tried to go down to 11mg about a month ago. Anyway after a very good discussion/review we agreed that I should stop taking the hydroxychloriquine and increase my steroids. So now back up to my starting position 3 years ago of 15mg!

He did say he thought it would be wise now to have s bone density scan and will arrange for that to be done soon. My CRP was 10 by the way, so still showing some inflammation.

Generally I’m feeling better, no pred fog and the can’t be assed attitude seems to have moved on. It’s just the pain in my hips and shoulders along with very poor sleep that bug me. Let’s hope the new regime helps. I do think the losing weight and now trying to not eat too many carbs has helped and I’m sticking to that. I have to now as I threw out all my over sized clothes😜

Started messing around with wood a bit more lately and setting my garage up as a bit of a workshop. Really enjoying this and it’s something I can pick up and put down as I want. The photo is of the large project, for me, I undertook for my grandchildren.

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Your lucky, lucky grandchildren. What an amazing playhouse and a satisfying project.

Good that you are getting a bone scan. A bit disheartening to think you’ve gone back to the start dose. I really wish you a smooth ride in your taper down when the time is right for you.

My unscientific observation on here has led me to the conclusion that there are some odd prescribing decisions made my doctors that seem to prolong things. Certainly fast reductions. I hope you go from strength to strength now,. Congrats on saying goodbye to the big clothes, confident move.

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Keep your chin up I am certain you will get their in the end

Its disheartening at times when we have to go back up to the starting dose again but better to do that and have a quality of live .

Love the play house

You could make a side line out of making and selling them

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What a fantastic playhouse- lucky grandchildren!

It’s good to have a project you can turn to when you feel you want to, and as it’s in the garage, no mess indoors - that sounds my kind of deal!

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Wow! Griggser, that is the prettiest playhouse I have ever seen. Certainly gives those you buy a run for their money. I can just picture the grandchildren's faces when they saw it for the first time. And all that in spite of the hip and shoulder pain - but what a lovely, satisfying hobby to turn to on those good days and I hope there will be many more of those now that you have a new regime in place with 'just' the steroids remaining. Now off to show hubby your beautiful playhouse - he will so appreciate it as he is very into wood, having made a rocking horse and a toy box for our little grandchildren thus far as well as an oak desk for me, nest of tables, etc. I do hope you settle into your new steroid regime soon with good results.

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Gosh Griggser, what a beautifully made playhouse. It looks immaculate. This may be the way to go for you.....making lovely things.

I am so sorry you seem to have gone back to the beginning. I know during last summer, after an incredibly stressful time regarding family issues, I was in an awful lot of pain and my GP ( I believe the same as yours!) suggested zooming up to 60 mgs, or 40 mgs ( when he saw the horrified look on my face! ) . He has always been good at letting me do my own thing regarding dose. I went up to 25. Gradually came back down to 20 mgs by this last December. Then in January I managed to see the rheumatologist I had asked if I could see ( recommended by someone in our group) a lady. She was incredibly thorough, and I actually don’t think I said very much at all!

She thought my PMR was now not “ active” ( don’t know why) thought I now had a Fibromyalgia overlap, but sent me for X-rays on my shoulders and MRI scan which confirmed impingement in both shoulders and with torn tendons in both. Also, after she phoned me to ask if I would allow her to refer me to an ortho chap for the shoulders, she also got an X-ray for my hips. She has had me going to physio for my shoulders and I , apparently, have arthritis in my hips.

Sorry, this is a long winded way of saying, that with her, she had identified other reasons for my pain. It took me an awful long time to adjust to these diagnoses, and, in fact, I have subsequently reduced the steroids down to 9 mgs which I have never been before and don’t think the drops have had any adverse reaction on my pain or stiffness. Also, a young junior doctor I saw at the practice ( had an HOUR with her!) suggested using paracetamol 4 Times a day, which I have been doing and seem to help. Also because of SheffieldJane’s comments about using Amytriptaline I have at last started using these for helping with sleep.

Again, many apologies for this garbled long message, but wonder whether your pain might be , now, for other reasons?

I have to say, I do still feel somewhat in limbo Land! Not sure at all what is due to what!

All the best...let us know how you get on.

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I agree with SJ - if they stopped messing about as much and let us reduce slowly and carefully I'm sure more people would get off pred sooner.

Love the playhouse - wish my g/kids were small enough to enjoy something like that. My oldest is 19 today!!! And the youngest appeared in the house last week when we were there - 6ft and hitting the door frames!

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Goodness PMRpro, you surely can’t be old enough to have grandchildren that age! Before too long it might be great grandchildren that you would like a playhouse for! That would be something! Think Griggser has found his creative side!

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God no - please not yet! I wasn't ready to be a granny at 48 - I'm quite wistful now as I see everyone with small grandchildren when I'm more prepared and would have the time.

The 19 year old is a stepgrandson - but my daughter's daughter was 18 last January! I didn't start particularly young but my daughter rather made up for it, she was still a teenage mum when GD was born, her 20th birthday was a couple of weeks later. GD is in a stable relationship I think - and he is nuts about kids. His sister just had her second and he looked totally at home cuddling the baby - better than Gran did! But I do hope they will be waiting a while ;-)

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It’s funny isn’t it about timings of things and whether one is prepared for whatever it is! My two special grandchildren will be shortly coming down to live in the next village but one to us, a couple of miles away in July. Grandson is almost 9 granddaughter six. Can’t wait! But the annoyance is being not as fit as I would have liked ( and hoped!) to be and whenever they come down we are always invited to go to the beach or wherever with them, but always accept how I am, that I always need an afternoon nap or am completely fit for nothing! However, when they move down we will hopefully be able to see more of them and for maybe just a cuppa!

There has been a “ vogue” for 30-40 something’s having children later, but it is interesting that down here in Cornwall, we see a number of twenty somethings starting families. My youngest ( the one coming down here to live) was late starting her family and she would have preferred to have them younger when she had had more energy!

Hey ho. Life eh!!!

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The trouble was that they were in Scotland and we were in England and all working, although I was freelance. The NHS doesn't allow for much in the way of long weekends and a 4 hour drive each way isn't very convenient for frequent visits. I did get to ski with them at a stage when it was still affordable I suppose.

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Yes, a four hour trip is not great is it? That’s how far away ours are at the moment. Given that now I am unable to share the driving with my husband, it takes a flipping long time for us to get anywhere! Last weekend it was an 8 hour drive up to Peckham to see my older daughter and husband! Slightly shorter on the way back. Fortunately they all love to come down here to see us. I “ only” have to prepare all the meals and put them in the freezer!

I am sure yours will fondly remember you skiiing with them in Scotland. And I bet they love to come to see you in Italy!

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The skiing was at least in Italy - but now they don't come here, no time and even less money.

I still do all the driving with the car - and a 4 hour trip is fine. I drove 2,500 miles to Rosyth and back a few weeks ago. We stop about halfway to Rotterdam or Calais - 6 hours each day. Hull to Whitby doesn't really count.

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Gosh, I am impressed! Maybe I will get back to driving a bit more before too long. Lost a bit of my nerve too, truth be told. Like number of us, find travelling for very long quite difficult.

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It comes back - I had a rough few years at the start. You CAN build the confidence again.

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Oh, thank you! That is reassuring.

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Lovely playhouse Griggster! Do you take orders?!! Sorry that you have had to increase steroids- always find that hard myself but wonderful news that you have lost so much weight!! - well done!!

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Nice job Griggser. Can't beat a bit of practical creativity. Well done with the weight loss. I need to do the same before I float off!

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