UPDATE ON PMR JOURNEY: Hello everyone, Started... - PMRGCAuk

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UPDATE ON PMR JOURNEY

Cheshy72 profile image
15 Replies

Hello everyone,

Started taking pred on 30th September this year after 3 mths undiagnosed. It feels much longer than that, however I am now taking 10mg. Went to see my GP yesterday to start on 9mg but after telling him my shoulder is hurting he agreed to let me stay on 10mg for another month. He is very agreeable and seems to have a good knowledge of this disease.

I had the results of a bone scan and since the last scan 3 yrs ago I have lost 5% in the lumbar and 9% in the femoral neck. I am now in slight danger of breaking a hip. That was a bit depressing to hear. The upshot of that is he gave me the option of tablets or twice yearly injections . Prolia 60mgs. I am to see a dentist first.

Thinking about it I'm not to keen on this and wonder if anyone of you are having this treatment. The criteria is over 70yrs of age and some bone loss.

In exciting news We have bought an old house in a country town with a gorgeous cottage garden front and back, away from the dreadful traffic where we are now.

I am going to get a lot of help with the packing and shifting and we have 3 months to get organised. Sorting out the Linen cupboard at the moment.

I read your posts every day and have learned a lot about PMR, Thanks.

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Cheshy72
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15 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Cheshy72,

Good to hear about GP taking sensible approach.

Would suggest you don’t think about any reduction until maybe after house move, certainly after Christmas New Year. Then maybe you could try either a 0.5mg taper or a slower plan like mine. Easier on the body that an “Overnight” drop -

healthunlocked.com/pmrgcauk...

And remember to pace yourself with the packing, easy does it!

Cheshy72 profile image
Cheshy72 in reply to DorsetLady

Thanks Dorset Lady. That sounds like a sensible way to taper. I will need to make a chart, at the moment my memory is kaput.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Cheshy72

I found it easier to follow that some others - think because I’ve put in days of the weeks rather than - so many days at x, one day at y, so many days at x etc. Just the way my brain works.

If you want excel s/sheet that you can print off just send me your email address via message - not on main forum.

Cheshy72 profile image
Cheshy72 in reply to DorsetLady

I think days of the week is easier to follow. Thanks for that.

SheffieldJane profile image
SheffieldJane

The news about your Old house in the country with a cottage garden is very exiting. It will be tempting to attack everything at once to get it how you want it, so you need to plan realistically taking your illness and the pacing you must do into account. It comes as a shock when out of sheer enthusiasm we try to be our old selves in terms of activity. I went for an early morning blood test yesterday and then to town later to collect a parcel. I was so stiff I could hardly get out of the car by the end of the day, hardly a marathon. When I pace, I hardly notice.

Let us know how you get on with the Biosophonates ( I have trouble with this word). It sounds like they are indicated temporarily for you. I'd love to hear a bit of positive news about them. The doctors are so excited about this remedy. Good idea about the dentist first.

Supervise the packing and sorting from a reclining position sometimes and employ plenty of help! Stick with your current dose of Pred until it's done and Christmas is done and you can make plans for the garden with your feet up.

Cheshy72 profile image
Cheshy72 in reply to SheffieldJane

We are in the country town staying in a B and B opposite our new house. Had another look inside with a painter who will be quoting as it has a lot of dark grey walls. Big job

The cottage garden is gorgeous front and back but wild and overgrown. We need to hire a couple of Gardeners to whip it into shape.

Had a removalist in to quote and very happy as they have a packing service if needed, it will be.

My PMR is under control but Plantar fasciitis is making me hobble around.

It's always something isn't it?

Not long before you go on your wonderful Christmas trip and then over here to stay with your daughter.

I'm very intrigued with your flying Korean airlines. I would not have thought of it.

Have a lovely Christmas.

PMRpro profile image
PMRproAmbassador in reply to Cheshy72

Where-ish?

SheffieldJane profile image
SheffieldJane

Hi,

We flew with them before. They were so much cheaper than Etihad or Singapore or Qantas. Their business class was really comfortable, flat beds, modern aircraft, good food, great service, best stopover hotel ever in Seoul, total luxury in with the flight price. The fact that it could be a war zone wasn't bargained for. It's cheap because nobody thinks of them.

How does plantar fasciitis affect you? I have been wondering if I have it. I have got a very painful,ridge,of my heel that I can't put weight on. It seems to be getting worse.

Your new home sounds wonderful. Where is it?

Do let them pack for you. We had packers once, they were amazing, so fast!

I love grey at the moment. I've got a grey and cream kitchen with one wall picked out in Farrow and Ball Arsenic (a blue green). I think it looks amazing.

We are flying to Australia after Christmas ( sorry it needs to be cold and frosty or snowing). In time for the New Year fireworks, we've got an apartment over looking Sydney Harbour Bridge with a shared roof terrace. It will probably be too much for me and I'll slink off to bed, as usual these days.

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

Interesting to hear - we are supposed to be in Seoul for a conference in July and our tickets are paid for by the conference. Don't think they will offer BC though...

SheffieldJane profile image
SheffieldJane in reply to PMRpro

Hi PMRPro. BC with Korean Air may not be much more than standard with other airlines. Have a look. You know you'd kill to get your feet up part way through, the flight.

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

Strangely, being a small person I really don't find cattle class too bad at all!

We fly from Munich as the nearest big airport - can't see any direct flights but there must be some. Last time we went with Finnair from Helsinki. Brilliant - 2 shortish flights and no international checkin at munich!!!! And their food was good...

I should also be flying to Sydney in May.

SheffieldJane profile image
SheffieldJane in reply to PMRpro

I have flown with Finnair previously. The cabin crew were charming mature ladies and everything about the flight was comfortable. I woke when the rest of the plane seemed to be asleep and I was brought a cup of tea without asking. I'd forgotten that.

It's outrageous but there is more oxygen in BC which makes the flight much better.

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

I was feeling unwell on a flight once - and told the cabin crew. The oxygen was turned up and after that I felt better. I don't mind it being turned down a tad - but not so much it knocks me out!!

Cheshy72 profile image
Cheshy72 in reply to SheffieldJane

So tired. We have been socialing non stop, going home tomorrow.

Our new house is in north east Victoria.

A small country town of 10,000 people.

1 hr away from wonderful vineyards in the King Valley. All run by Italian families who were tobacco growers and diversified into wine after the gov altered the rules. As they tend to do.

The town is Benalla, it is on the way to Sydney from Melbourne.

Beautiful Art Gallery, performing arts centre, rose garden, botanical gardens 20 mins away is a 1950's picture theatre which has special movie nights.

My husband knows quite a few people here. Can't wait to move but have to be patient as he will be having his Radiation in Feb.

plantar fasciitis is a nightmare. Shocking heel pain especially getting out of bed in the morning. Hanging on to the furniture I have bought Dr Scholl heel pads which elevate the arch of the foot and helps a bit plus exercises. That's it or could have a steroid injection in heel which could get relief for a few weeks. I don't think that is worth it really.

Anyway as we say it could be worse.

SheffieldJane profile image
SheffieldJane

Your new home sounds like heaven. If we ever come to Australia permanently it would be to somewhere very like that. My youngest daughter and her family are living in Sawtell NSW. It is where the river meets the sea, with amazing surf but safe sandy rock pools for the children. They also have an exquisite little cinema that is gloriously cool. Art Deco in design. Your poor heel sounds worse than mine. I am only really aware of it when I put my feet up.

Sending my best wishes to your husband for a speedy recovery. Also love to you for holding it all together. Happy times ahead!!!

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