Swings and Roundabouts

Bones, joints and muscles
1

Ive been lucky and had a long time on the swings; things seemed to be going very well and the only thing I wasn't looking forward to was a session at the dentist next month! I had the Pred down to 2.5 (for 7 weeks) and the Methotrexate down to 15 and was looking forward to announcing this news to all and sundry.

I went for a routine check at the doc surgery yesterday as I know I will have to have some tooth extractions and wanted to make sure that everything was OK before the event.........it turns out not!

I couldn't see my usual doctor as he is on extended leave (how very dare he) so I chose one of the female doctors and girls! have I hit pay dirt!

She is young but amazingly very clued up on both PMR and GCA, knew just what was what and so I know I am going to stick like glue to her in the future.

The only thing I had to complain of was the increasing pain which seemed to be coming from the top of my spine/base of the skull. That has been a tender spot for years and I have always put it down to my dancing days (ballroom dancing does not keep your neck in a good position, or your left shoulder, come to that). At times - and only at times - the pain was radiating up the left side of my neck and up into my ear and jaw but was not a constant problem and my left side has always been the worst, e.g. my left eye has always had poorer vision than the right.

She gave me a thorough going-over and then broke the news to me that in her opinion it was the GCA making its presence felt and that there was no option other than to raise the Pred up to 40mg at least while further tests were done. I was so totally stunned, I hardly remember getting home, but what I had realized was that after last year's little episode, I couldn't do this without making my Rheumy at least aware of the problem. Although she had said she was going to write to him, I felt that the letter might not get there quickly enough!

I phoned the Rheumatology unit and spoke to a very calm young lady who managed to unscramble my somewhat incoherent babble, took all the details and told me one of the nurses would call me back very shortly. Again, I was surprised because she also seemed to recognise the need for speed where GCA is concerned. Bless his cotton socks, the Rheumy himself phoned and it has been agreed that I stay on the 40mg until Mon/Tues when he will call me again to find out what the immediate response has been. Sensible man - I'm hanging on to him as well.

So there it is........whatever happens I am back on the roundabout of Pred reductions (or not) and I have no idea what happens when you've got someone who needs a high dose of steroids but isn't supposed to have them, but I have this feeling that I am going to find out.

At least I am spared the shock of finding out unwittingly what a high dose will do to me. After all this time I know the worst and if some of it doesn't happen this time round, it will be a bonus.

Sorry for the long post, but I'm in need of a little TLC from those who understand best!

Nefret

2

Dear Nefret

We've already been in e-mail contact but I just wanted to add a little thought for you to hang on to: when you've successfully managed to get so low on the steroids, if this turns out to be truly a flare it may be quite possible that you will be able to reduce quite quickly from the high 40mg dose as the inflammation has been well under control for some considerable time. This was my experience under the direction of my rheumy following my couple of flares although I must admit he never increased me back to 40. Chin up I'm routing for you together with all your other friends on here! :ok:

MrsOxx

3

Nefret - oh, pooooooooooo! :roll: :wah: Big hugs and a :cuddle:

What a disappointment - but, at the same time - if you have had such a good response from 3 members of the medical community MAYBE things will be a bit different this time. Let's hope so.

I really do think that there are a lot of people out there who have something in between typical PMR and typical GCA and they are being missed. That neck pain/up into the side of the head is something I had for years as well and, like you, put it down to the longterm back problems that have dogged me for years. It's all gone on the steroids and only appears in any form when I have a flare or when I got to a much lower dose last year. I certainly had a few of the \"GCA symptoms\" when the PMR was really bad but not the terrible headache or any visual problems that seems to be what they are fixed on.

But it looks as if the awareness is improving - despite some of the tales we've heard in the last few days. Treat your new GP lady very well - some of us might come and borrow her :wink: - have you a Travelodge anywhere near I can come for a few days holiday and have a flare?????

Ummm - why the teeth extractions? Jaw pain or holes in the teeth?? Might it be the GCA? However - you can truly say that PMR and GCA are a pain in the neck :lol:

EileenH

4

Nefret

Another ten ton truck came your way - but thank goodness for your clued up new GP and yes stick to her like glue.

I started on 60mg and reduced comfortably to 20mg, flare up to 40mg, then quite quickly down to 20 or 15mg and then -whoops - but just 40mg needed this time. So it might not be too rocky a ride for you.

I know you will battle like you have all this time, but oh I wish I could hug you for real.

5

Dear Nefret,

I can only echo what the others are saying :oops: .

Yes, this is a blow, and dissappointing when you had been reducing so well, BUT, better safe than sorry and although I only have the PMR aspect, from what I have read the GCA is not to be messed with :roll: :wink:

It sounds like you have a good team looking after you, and we are all here to support you virtually.....so big hugs and have yourself a little treat tonight :donut: :redwine: :ale: :choc: .....you deserve it smile

Love, pauline.

6

Mrs. O, that is a good thought and one I will hold on to.

Mrs. K - I could really go a big bear hug, but it might start me blubbing and that makes my head hurt even more......cyber ones gratefully accepted.

Eileen - teeth extractions; I knew before we moved down here last year that one needed to come out, it had broken below the gum and couldn't be saved. I intended, and had arranged, to have it done but had to cancel the appointment as I was hospitalised the week before and had no idea how long I would be incarcerated. Then there just wasn't time to fit it in again after they let me out of Colditz, but before we moved. It gives me absolutely no trouble but, of course carries the underlying risk of infection..................now another one has gone the same way.......I think they will be hospital jobs now. Oh, my previous dentist blamed the steroids, too....I've really only had teething troubles for about the last five years!

I agree entirely that there must be degrees in the line between PMR and GCA and I suspect I have been hovering along it somewhere for some time. I've always complained of scalp pain, right from the start, but not temporal pain........it was the top of my head which was often on fire. I did not tick any other of the boxes for GCA until about two years ago and was given the diagnosis then on a symptoms match - the only one I didn't tick at that point was the vision one.............got glaucoma in the family, so I have my eyes checked more often than is usual. Also have a diabetic retinopathy each year, no problems there so far.

Oh dear, another long post and I have been away from the news for too long, too..........must go and see if there have been any more earthquakes, tsunamis or volcanic eruptions in the last hour. These natural disasters seem to be gathering force and put my problems into the shade.

Nefret

7

Oh Nefret

What a dissapointment Its a shame you didnt have this Dr earlier as she is obviously on the ball

With PMR we can wait a while with a bit of extra pain and keep our fingers crossed but obviously with GCA you cant take any chances but lets hope with hitting it hard it wont take so long to get back down to where you were

Ive been trying not to be too pleased about how much better I feel and how much more I can do as i know it may come back and attack me at any time

My very best wishes to you and we are all wishing you well

Mrs G

8

Dear Nefret,

sorry to hear your bad news, but at least you are now in the care of someone on the ball.

There could be a long queue outside your GP's very soon ! :doctor:

Hang on in there,wishing you all the best,

Julia xx

9

Nefret What a mixture of rotten luck :cry: :yikes: and good fortune. As you said you are going to hang on to the sensible medics who have pulled their fingers out and responded in a hurry in your hour of need.

I am so sorry that you have had this set back just as you were going along so well with \"only\" the dentist to worry about. This is a sledgehammer of an illness as so many others have said. You can never dare congratulate yourself. Do hope the 40 mgs will at least make you feel more comfortable and, as Eileen has already said, you may not have to be there for too long.

10

Good mornig everyone ! !....It is grey, dark, miserable....but I think \"Japan\", and count my blessings.....It must be like the end of the world !...No sooner one disaster is news and gone, that another worse one strikes somewhere else...and then, Egypt, Libia, etc etc...What a world we live in ! When compared with all that, the aches and pains we have, fade a little !? Which brings me to the point why I am here ....To ask : This PMR we have, is it at the same intensity of pain for everyone, or has it different scales of pain for each individual ? Do we feel pain at the same intensity ? or have we different levels of pain ? Do women respond to pain at equal levels as a man does ? And is it only me, that can tell a difference between pains ? Such as : a burning pain, a dull pain, an agonising one, a stabbing pain ? etc etc..? Some pains one can cope with, some others, cripple and make you double up. Some pains in the hands, make you drop things, if you ever manage to pick any up..... I cannot unscrew bottle tops anymore, use a tin opener...open the doors with those round brass knobs....hold on to banisters....etc etc...Life has really changed, with the arrival of PMR. I need some help in getting to know the BEAST and tame it !.....Any answers, please ? :roll: Love to all of you, Granny Moss :rose:

11

hello Granny Moss

From a very sunny New Forest !!

I and I am sure everyone else has different kinds of pain The ache when muscles are tired ,the sort of \" ouch \" when you have banged into something Sometimes we will get a stabbing pain from the wrong movement ,when my knee was at its worst coming down some stairs would be a stabbing pain You also get I think a sort of tiredness pain from when you have overdone it when all the muscles are protesting

I do believe people have different tolerance of pain as well There are always some who will \" soldier on \" and others who cant

My muscles were definately weaker last year when my PMR was at its height ( I hope its not going there again !!) I was always dropping things had no grip at all and seemed to have lost flexability in my wrists I was constantly burning myself on the oven so bought myself expensive long gauntletts from lakeland but as my hands are small they were useless !!

I am much stronger now and more flexable again and my exercise classes are helping

Lots of Local health Authoritys do run exercise classes even armchair and wheelchair ones just to keep your flexability going it is great to have extra company as well You would like the person who runs my glass she is like a bouncing ball !! Always cheerful and fun and though about 45 does so many sports and manages to do about 150miles a week on her bicycle I really look forward to it now and have met some nice people I do think you have to keep mentally up to help beat PMR as well

We have a good day coming up Italian niece and Nephew are coming down from London and we have booked a Forest Pub for lunch and they want to see the horses and go around the forest as that is their first memories of England when they were babies !

Hope you have a good day

Mrs G

12

Good morning Granny Moss and I agree: those poor souls in Japan would not moan about our weather would they!.

Yes, PMR pain can vary considerably from person to person. It can range from moderate to severe and all the stages in between.

Although we are all under the same umbrella of PMR and/or GCA with pain usually being felt in the hips, thighs, arms and shoulders most people's actual pain levels will be different, also bearing in mind that some people have a low pain threshold whilst others have a high one.

It has been mentioned so many times here before that we are all different and, therefore, will often respond differently to the steroid treatment.

Differences can be seen the way some people \"just\" get PMR, some develop PMR with GCA whilst others can even develop GCA after recovering from PMR; some people show increased inflammatory blood test markers whilst others can show normal readings throughout; differing responses can be experienced in reduction of the steroid dose

As for women versus men, it has been shown that many men visiting this forum over the last few years do seem to have a faster and somewhat easier ride than us women - possibly hormonal reasons - although I do know two men who have never completely beaten the disease after very many years.

I can so sympathise with the problems that arise when the hands are involved. I have osteoarthritis in my hands with what are called heberden's nodes on all the first joints on my fingers. Having also suffered from what was diagnosed as severe Repetitive Strain Injury in my thumb joints some years ago when I couldn't even lift a cup and had to wear made-to-measure solid splints, I am very respectful of my hands and how I use them. For instance, we have all the special gadgets for opening those pesky jars and bottle tops and wherever there were door knobs or handles that proved difficult we changed them. If you haven't already got these gadgets, Granny Moss, I definitely recommend them.

Hope that helps to answer a few questions and I'm sure someone else will join in with even more answers to this complex disease.

I think I can see the sun appearing and I do hope it's shining on everyone else in more ways than one! :star:

13

Hallo All and hope the weekend brings some good times ( translate freely )

Dull here early but lovely sun now :star: :star:

Different sorts of pain? Oh,yes, Mrs. G interested and pleased to hear your muscles are much stronger than a year ago. So are mine. I associated the desperate weakness with the higher steroid doses. I also believed that the weak muscles aggravated the painful bones as they were giving far less support. You could almost hear ther poor things clanking around.

I, too, have knobs on my finger joints and when they first appeared years ago they hurt a lot. Now my hands are clumsy but they don't hurt at all.

To me the worst pain is the mental pain. Wanting desperately to get on and do all the things that I want to do but finding the lack of stamina won't alow me to keep going. Also I have always distinguished betwween having local pain, however severe, and feeling ill. Some people think that that is strange

14

MrsO - do you think that RSI in your thumbs might have been the PMR? I had it in both the base of my thumbs and from my elbows, sort of from the outside dimple on your elbow diagonally across towards the base of the thumb. In some ways it was the worst thing as those, combined with the 3 joints in my fingers which hurt I could do very little with my hands - I think I once mentioned at its worst I could barely hold a wine glass :cry: and a mug of tea was only possible with both hands. Thank goodness for a dishwasher - as long as I didn't drop things putting them in it! Typing my translations was awful - but being self-employed there was little choice! Almost all gone with steroids.

Granny Moss - yes all sorts of different feelings of pain - burning muscles, sharp stabbing pains in finger joints, aching thumb joints, the feeling of sharp pebbles under my feet when they are bad. And the stiffness which isn't really a pain as such, just uncomfortable.

EileenH

15

Hello Nefret

I felt so sorry for you, when I read of your experience. Its like snakes and ladders isnt it. You must be feeling absolutely gutted.

I had another flare up last weekend, but its nothing compared to your experience. After 18 months got down to 3.5mg, however mega problems last weekend , so now I'm back up to 10m.g. Feeling a lot better this weekend.

The one positive thing to come out of your latest problem- you seem to have found a G.P. who knows what its all about. They are a rare breed!

We are all thinking of you, each of us knows how you must be feeling.

Keep us up to date, and let us know how you are doing.

Brenda

16

EileenH. Pebbles under feet. Yes, I experienced those. Had to take shoes off, when walking, to look if pebbles were in there ! ! :?

BettyE. Knobs in fingers joints. My daughter has those. She is been treated for Fibromyalgia ? Very painful, but not all the time. Wears fingerless gloves to keep joints warm. I have spoken to a lady at the chemist, which said, had both : Polymyalgia and Fidromyalgia. Is this possible ? Any comments from the experts on this Forum ?She also had diabetes, and terribly swallen legs, and only 54 ! !....I believe that is tantamount at having won the jackpot......I am keeping quiet at my lot ! !.....considering how ancient I am ! ! ....love to all. Granny Moss :rose:

17

Those pesky pebbles were under my feet for a long time !

Granny Moss, I too have both PMR and Fibromyalgia.

I have the lumps in my fingers, have had them for ages, haven't been able to wear rings for a long time, even my wedding ring etc.

And I am 54 ! was it me ? :wink:

Damp weather back again, boo. :blue:

Best to all as usual, Julia xx

18

Eileen - I don't think my RSI was PMR-related as it was a long time ago. Some years before RSI I remember being laid low with a bad back which caused pain and sitffness throughout my body. Although that was put down to the spondylolisthesis, I do now wonder if because of RSI and ostearthritis I was more easily predosposed to a rheumatic disease like PMR. But then, of course, there are probably many PMR sufferers who have never had any arthritis type problems in the past!

I'm really intrigued by what you describe as \"a feeling of sharp pebbles under your feet\" which has disappeared whilst you've been on steroids. I make a lot of hard skin on the soles of my feet and I have to have that and the accompanying seed corns removed at the Podiatry Clinic every 3 months otherwise it becomes too painful to walk. Strangely a couple of times recently I have felt such pain on walking that I've started to feel I could do with more regular treatment. However after a couple of days, the pain has just disappeared again without treatment. The last occasion was just last week. I've also had a couple of days on different occasions where I've experienced fleeting odd pains in the side of my head which also then disappear. It's obviously started to make me wonder if PMR and GCA are rearing their ugly heads again although both the GP and the rheumatology nurse I rang said it was unlikely as I didn't have any other symptoms. Can't go by the inflammatory markers on this occasion as they have been raised due to the throat infection anyway. However had more blood tests this week so will see what the results are when I next go to the hospital. Hubby thinks the fleeting head pain is because I'm probably subsconsciously stressed over these glands and all the Dr, dentist and hospital visits etc over the last few months, plus we've had the decorator in and been in an upheaval for the last 10 days, so quite a bit of stress. In fact, I'm knackered after trying to get the room back to normal today so I think I'm off to get some shut-eye now. Nite Nite :sleepy:

MrsO

19

Eilleen H & Granny Moss.....I have had that weird sensation of a pebble in my shoe aswell....am constantly taking off shoes and shaking them looking for a non-existant pebble :oops:

Maybe it is some sort of hyper-sensitivity in the feet caused by the steroids :?: , or maybe our feet are just ahead of the rest of the body in realizing it is time to sit down and have a rest :wink, :lol:

Either way, it is good to know that others are having the same experience and at least it is uncomfortable as opposed to painful :wink:

very best wishes, Pauline.

20

Pauline - no, not the steroids as it was BEFORE diagnosis. When I stood up after sitting for a while it wasn't just the overall stiffness to get going, it was also it felt as if my feet had been squeezed and putting weight onto them was pulling the bones apart, spreading them out. This severe pain reduced to merely bad pain :roll: :cry: and made walking really uncomfortable. It was mentioned often enough but no-one took up on it - except the most arrogant, condescending physio I have ever met told me it was the shape of my feet and I'd just have to live with (he was supposedly a musculo-skeletal specialist but didn't recognise any of the things I was complaining about possibly being part of PMR).

MrsO - I get pressure point \"corns\" on a few places on the bottom of my feet. It's wonderful when they're just been dealt with. I'm told it is because my feet have spread and flattened at the front, behind the toes so to speak (still have the mega-high arch that makes buying shoes difficult anyway) so the places the pressure develops are different. Looking back, I realise I threw out loads of pairs of shoes after the PMR started as they seemed too small all of a sudden. It never was easy to find shoes, now it's well-nigh impossible.

EileenH