Catch Up

Bones, joints and muscles
1

I come to this site every day and have been wondering why there were no new posts. Working on the automatic, I just glanced at the top entry which, being a sticky, stayed put at 8th Aug. That will teach me to engage the main brain in future.

It looks as though Pauline and Eileen have been having a particularly rough time. Fingers crossed the new drug you choose will do the trick, Pauline. I am still bruising very easoly and am only on 5. I do find it strange that, although my skin is like tissue paper and I only have to brush against a surface to bring up purple patches, small injuries heal amazingly quickly. What are the steroids doing? Not sure I want to know as there is no alternative as my least favourite lady said.

Eileen, you say 15. Does that mean every day or are you still using your ADT regime? The latter, I hope.

I couldn't stand the temperatures your friend and your husband have had. I find it much easier to get warm in cold weather than cool in hot. Today is lovely. Bare arms and able to move without sweating. Three more months, please and an inch of rain a week at night. ( Monty Don's idea )

I remember you saying that it was amazing the difference that even 0.5 a day could make. I'd been on 4 for two months and not doing too well in the pain dept. but fine in myself. Doctor said go back to 5 for three months and six days later pain has halved. Neck pain still a worry but no sign of jaw or eye probs. Reported this and GP reckons it's \"just\" PMR. I'm thinking of ringing him and asking if, should I get GCA symptoms at weekend ( when else do problems ever crop up? ), should I up my dose and to what level.

Rosemary, glad 5 is working for you, too. How long will you stay there? Have just looked up my first time records and see that I had a glitch at 4 then, too. Back to 5 for two and a half months and then 4.5 for a month, then 4 for a month then 0.5 reduction a month until next glitch at 1.75 but after that minute reductions for the next 6 months and that was that. Can I hope history is repeating itself?

Hope the celebrations were good, Lizzie and that you soon match your bloods!

Hells teeth. Now I see I've clicked new topic instead of reply. Is there any hope?

. Will remember to look down the list in future. Think I've caught up now. Sorry to be so long winded.

2

Hi Betty - I still come here every day. It's a shame so many people don't seem to bother with both forums as I see them as serving different purposes - the serious questions seem to disappear over on the other one. Or is that just me?

No - 15mg every day at present unfortunately. So I now have hamster cheeks and a further change in shape :roll: The cheeks appeared in about 4 days after a very short high dose taper - I was not amused! The healing quickly bit is strange isn't it? If I cut myself I bleed like a stuck pig for a while but it is then gone and healed up within days. Had a bit of trouble with bruising for a few weeks - round the bra line :oops: :roll: but that has settled again too.

I didn't go to the USA with him - I love going to the meeting but took one look at the cost of the flight and decided I'd far rather spend it on something for me. Well, if you can call a new kitchen and bathroom for the flat we rent out to our daughter for me! I was SO glad I did. The meeting rooms were icy apparently - and on the first day there was no-one to alter the settings. Some conference centre that was. The hotel allowed a bit of warming up though but it was impossible to go out and walk which is what a couple of us do between times, not far. I'd been to Washington DC a couple of years ago and it was as hot as hell then - and not a lot of shade between the various Smithsonian Institutes. It's hot here now - 28C in the afternoon. Even that is nice in the shade but out in the sun it is far too hot. Sitting on the balcony catching up with 6 months of People's Friends is fine - picked them up from the younger daughter who was introduced to them by my mum!

I think the neck is one of the first places for PMR to be noticeable when the dose is too low so I wouldn't worry about GCA too much. And if you feel good at 5mg - why worry too much about getting the dose down? You might find other aspects of old age rearing their heads without it :lol:

nice chat! Very peaceful...

Eileen

3

Not just you, Eileen.

The chat is important, too and cheers people up when needed but sometimes when the thread becomes, not exactly corrupted, but a bit extended and many- branched the serious stuff can be hard to track.

This side gives a sticky link to the other; do you think PMR Support could do the same for this one? Further info on Patient Experience ( with link ) perhaps?

4

Hi Eileen,

I also thought that you were on 15 split over two days :oops:

I'm sorry to hear that are up to that level again, but we all know by now that there is no room for complacency with this wretched illness....every time you think you have it cracked it comes back to prove you wrong :roll: Hopefully you will be able to taper down again soon and the \"Hamster cheeks\" will disappear for good.

You were probably very wise not to travel to the US with your husband as it is a long trip when you aren't feeling 100%.

Your comment about the air-con reminded me of the first time I was in New York. We were in a restaurant and I was frozen....staff said they could not adjust the air-con, so I had to keep going outside between courses to warm up :lol:. Older and wiser, I now always bring a cardigan or cover up of some sort when dining in the US :wink:

I am off to get my Mantoux test checked this evening and then hopefully will get started on something to sort out my hand pain properly.

Hope today is a better one for you.

Love,

Pauline.

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Hello Betty

On my first PMR trip I sailed through it all so unfortunately those rules dont apply this time !

I will have been on 5 for about 3 months nearly with my next blood tests and review with my Dr and so we will see then She did say to me at the end of May when my bloods were up and I was aching a bit that she thought I might have to go up to 5 to sort it out but of course I went to 3 then to 4 then felt OK so got to 3,5 in a month ached a bit up to 4 then to 5 !!!!! next time I will try and listen to her !! Far too much yoyoing so I will go for stability for a while I really hope your reductions go well when you start

yes Im surprised there is so little posting on here now but I think the chitchat on the other site is important as there are lots of people on there in early days of PMR or more seriously with GCA who really arent leading there normal lives at present Im lucky that mostly I am but I dont put too much pressure on myself

Im really sorry Eileen that you have gone backwards and hope something comes of your appointment tomorrow

Best wishes

Rosemary

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Eileen I am so sorry to read you are not doing well and back on 15mg...... my heart goes out to you and I wish you well for tomorrow and hope it can be sorted quickly.

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I also look in here daily, I agree that the serious stuff can get lost on the other one.

I don't think the newer posters on the other have registered on here and it is rather a shame, the serious bits and pieces do need ready access - but I don't know what the answer is (I'm afraid of all the techie thingies).

I feel that it will settle down with time, but maybe that's wishful thinking.

We do need to get the message out though, then maybe I wouldn't get the kind of call I did last week - the caller explained her problem and then asked me how long I had been on Pred. When I told her more than 9 years, there was a stunned silence and then she said incredulously 'and you're still alive?' She had been given the impression that it was take the steroids for ever and that was that. No explanation of what or how they do what they do, no monitoring, just told to get repeat prescriptions! Grrrrr!

Nefret aka Catie

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Nefret...... completely understand how you feel with regards to this BUT in my limited experience with my rheumy, IF I DO NOT ASK the QUESTION it will not be answered and as we all know, in the early days we are in a daze and do not know up from down....... it has taken me over a year to sort myself out prior to an appt and have my questions ready....... not everyone is able to do this for various reasons and there are many rheumatologists out there who do not engage with their patients for one reason or another :roll:

Sad state of affairs but many of you reading this will know exactly what I mean!

Information is not offered in many cases unless specific questions are asked.....i thank goodness for the internet and the ability to research for myself and for the support group which has enabled me to educate myself so I know what to expect and can sort out what I need to ask.... even then I sometimes come away from appts knowing I should have asked a certain question but for one reason or another did not :roll: :roll:

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Quite understand where you are coming from, FiftiesGirl, but this wasn't her Rheumy, it was her GP. No referral, no explanation, nothing offered to her by way of advice and if you don't know there are questions which can be asked it can be very difficult to find a starting point.

She genuinely believed that that was it! Take the steroids for a couple of years to help you along while you are on your way out.............

By the time we ended the conversation she was crying again, but with relief...........I'm so glad she found us.

Catie

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[quote]This side gives a sticky link to the other; do you think PMR Support could do the same for this one? Further info on Patient Experience ( with link ) perhaps

There was no response to this suggestion and maybe there are difficulties I do not appreciate but I'll try again; obviously I am not alone ( as they say! ) and new people cannot have too much information.

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Betty

If I'm understanding what you are saying, I think the request will have to go to the administrator (Chris) of the PMRGCA newer forum over on the other site for the sticky to be set up on that site referring people to this one.

MrsO

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Nefret, that poor woman ...... thankfully you were at the end of the telephone for her

I should have qualified my post by including doctors!!

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There is now a link on the other forum under \"Useful links\" (sensible title for such things :wink: :lol: ) so if people get there they will find a direct link to here. Not much more than that to be done I fear - it always depends on people going surfing around a site until they find everything and then trying it out. We can onlly light a few candles and hope...

Catie - do you really mean the poor woman hadn't been told this isn't life-threatening, that it can be managed pretty well on the whole and millions of people all over the world take steroids year after year with minimal problems providing the dose is low enough? I'll grant if you have concomitant illnesses it complicates things but even so.

I've been getting really cheesed off with highly paid members of the medical profession recently. It's getting worse. Do you know, whilst I was heading for the UK there was a brief thought of seeing someone privately as the only way of seeing a consultant quickly. That stopped short when I was told the charges: something in the region of 200 quid for 1/2 an hour - what can you do in that time? A private \"visit\" here and in Austria is about 70 euros, £60 or so. How on earth do they justify it in the UK? Of course here, people are quite happy paying themselves to see the same guy (or gal) every time rather than take pot luck - the UK is aimed at the BUPA customer and corporate insurance. And all the private bunnies I've met here are very nice - you have to get the client to come back after all! And the guy in the local hospital? He wants to see you next week? You get an appointment next week - if it is just to check the bloods/dose change question, you get an appointment at 8.45 - fitted in before everything else. When I went in to A&E with my original question the only reason I didn't see him that day was because he was in the other hospital 20 miles away.

Eileen

14

I doubt very much if she had been told just that in words, Eileen. She appears to have been quite literally given the Rx for steroids and sent packing, no info or advice, or even any mention of blood tests. She remembered being told 'two years' and thought that's what she had left.

When she said 'and you are still alive?' I thought it was a wind-up momentarily, because we'd already had a confused exchange as she thought I was an automatic system - she was so sure it was a robot my end.

Luckily she's in an area with a very good support system, so hopefully she is much relieved and happier now.

Catie