Tearful Day today

Shouldn't make any difference - many patients are actually diagnosed with PMR because they have the bursitis and the doc tries a cortisone injection and all the other bits improve magically. That was partly why I suggested trying taking a higher dose for a couple of days and seeing if it helped. If you sort of superimpose a bolus on top of your usual dose it can reduce inflammation like you have without any downsides - by that I mean you take a higher dose, say 20mg for a day, then drop to 15, 10 and back to your normal dose on consecutive days.

The cortisone injection should (theoretically) be delivered directly to where the problem is, it has a high concentration there and has the most effect. Sometimes it is done with imaging to make sure the needle is in exactly the right place. Otherwise there is something like a 1 in 3 chance that it is absolutely in the right spot - but with a hip joint there's more area to aim for! I have had a joint cortisone injection and it was absolutely fantastic in reducing the pain from the injury. I was offered the choice to have it or not and asked why - because it can be painful the doc said! But given the choice that was what he would have opted for and so did I. The injection itself isn't painful as it is given along with a local anaesthetic. The pain comes later as that wears off. It was a bit of a pig (started whilst we were out for dinner!) but didn't last long and went with some aspirin - afterwards the difference was amazing. :lol:

Where did you live in Germany? We were in the middle of a Spargel growing area around Nuernberg so almost bathed in the stuff during the season - so much better than the autumn when it was carp! Which just tastes of mud to me - yuk! :roll:

Happy Easter

Eileen

Hi CathyG,

My husband Bob had a walk in shower fitted where our old bath used to be, the social service people came & assessed him,he has heart probs diabetic & had P,M,R, sometime ago. & we have grab rails next to toilets etc, everywhere we needed them they were marvelous didnt cost us a penny, also stairlift but when we lived in our last house we had to pay some towards it,but in our second house we didnt as we had paid before.

It is worth you ringing them ,.as someone said you can qualify for these aids when you have P.M.R.

Luckily for me I can use all these features too which is great.

No probs whether renting or owning your home.

Hope this helps

Cheers Amycakes, feeling better now back on 25mg, got 2.5 & 1mg from doc on thursday , so all prepared for a slower drop soon.

Eileen - thanks again. We were in the Moenchengladbach area, at Rheindahlen - Joint HQ - working for the Army Childrens' Education Authority. We were there for 13 years and we still miss it! It was particularly good to be able to travel so freely in Europe with no ferries to worry about. We were both Modern Langs teachers so it was particularly good for us.

Have a nice asparagus meal tomorrow!

Beev

Hi All,

Visited my G.P. last week, for blood tests, had to ask for them as my private doc doesnt go by them, anyway to satisfy my curiosity, I went.

Rang yesterday for results my E.S.R was 33, cant remember my C.P.R. wrote it somewhere ,still looking for it!!But she said it was ok.

Anyway seems like E.S.R hasn't dropped that much it was 38 before xmas.

Does anyone know what these numbers should be?

Hoping Eileen can oblige?

Also my private medical insurance has run out , it goes from April to April, so will be trying to see same doc through the N.H.S. as he has got a clinic in our local hospital, fingers crossed as, I really dont want to pay another £500.

before I visit him for him to charge me a £100 each visit, just to talk.Will go back to my G.P if I cant see him, as he is on the ball too.

On 23 & a half steroids , & functioning better, weather has helped though, great!

Will try dropping to 22 & a half in a few days.

Hoping you are all enjoying the lovely weather, even though we desperately need rain.

Keep positive, hoping you are all out of pain.

Cheers Amycakes.

Amycakes - it is said you can work out roughly what your ESR should be by taking your age, adding ten and dividing that total by 2, so at 60 a figure of 35 is fine. This is just a rough guide and it can vary - mine at 58 is about 4 to 7 (and has always been so throughout the PMR, even when it was really bad!). Basically, doctors start to look at it as suspicious once it is in the realms of 40 - though why 38 should be OK and 42 not remains a mystery to me, especially since they don't have a baseline figure to go by. ESR increases with age normally and a young person should have a value in the teens or twenties. CRP figures depend on the method used in the lab but it should be quite a low figure - they should be looking at high specificity CRP (I think that's what it is called) and it can also be an indicator of heart problems.

The chances of you getting to see the same guy is quite small I'm afraid - it is much more difficult to get to see a specific consultant now which messes up the idea of seeing the person who has a special interest in a given disease (stupid governments and their interfering). Being seen quicker is NOT always better! (Mini rant over :roll: )

If your GP seems pretty much on the ball, now you have a diagnosis I'd stick with him. All you need is someone to do the necessary bloods occasionally, take your BP and make sure you aren't going into anything nasty like being Cushingoid because of the steroids. And write the prescriptions! Those are the most important bits :lol: Wouldn't be paying private rates just for that! :roll:

And you'll have seen me preaching mini-drops - I'm going down half a mg at a time, pill cutters are great! I drop 1/2mg every 2 weeks or so and so far, so good!

Looks like you might get your rain for the weekend according to Sky News - us, we're to have up to 30C on Sunday and no sign of rain, everything is bone dry as we've had about 5% of normal precipitation since the beginning of February!

cheers,

Eileen

Thanks Eileen , knew you would come up with the answers.

Yes I'm think sticking to my G.P. now would be the best thing .

Not sure what cushingoid is, apart from moon face /hamster chops etc, which I do have.

My age is 69 so I guess E.S.R of 33 is about right.

I have read a lot of the lowering doses, & will be sticking to that too.

We had the rain overnight which was great , clearing up in the day as I write.

Take care & thanks again, I have learned more through this site than any docs!

Amycakes.

Hi Amycakes,

My ESR (at age 65 in a few days time!) is 2 :yikes: At the very top of my PMR performance it reached the dizzy heights of 7 - we're a weird lot aren't we!!!

Love from Lizzie (total lack of energy today and just about to pick up the grandson :wah: ) xxx

Hi All

I am GCA only and not PMR.

ESR and CRP are really just guidelines.

In the UK, I have discovered that each Hospital Trust area - has its own range of markers for ESR and CRP. So what is acceptable in one area, 5 miles down the road, it is not acceptable. Go figure.

My ESR rate hovers at 27-28. That keeps GP happy. But I am 73 so 45 would be the 'norm'. But neither my GP or Rheumy would stand for that figure.

CRP, (the most important one for me with GCA). Should be (in my area) around 7-8. It has been as high as 242 when I had a kidney infection and the GP came racing out to see me because he was so worried I might be running into trouble with GCA.

I was not and reminded him that other things can cause it to go up and not to worry, the clinical symptoms I knew well. He already knew that other things could cause the increase, but had never seen one so high.

You will gather I have a first class GP and Rheumy.

Now my CRP has been stuck at 13 for 6 months and the argument to take the next drop has been raging, until another friendly Rheumy, pointed out I was 5'9\", overweight by 3 stones (due to steroids) bone density still 97% and that would probably mean that 13 could be normal for me.

So we all agreed, to my great relief, that I can go down by 0.5mg - so have been on 2.5mg for four days now. Another CRP test on 14 June and then we see whether CRP has held or go down. If its holding, will take drop to 2mg. If its gone down, hope to drop to 1.5mg.

Mind I have been warned that when I get to 1mg, I might have to stay there for the rest of my time on this earth of ours. We will see.

These two orphan diseases really need in depth research.

Well, that is my sixpennorth.

LizzieEllen - you're the first person I've some across with an ESR as low as mine - have never found out if it is at all significant!

Amycakes: Cushings syndrome is the name for the effects that taking a lot of steroids has on you - the hamster face, the fat depostion on the trunk and back of the shoulders, the thin skin and striations some people get, all the rest of it. It can also happen if your adrenal glands make too much cortisol for some reason (often a tumour) and then it is called Cushing's disease but it is quite rare. The physical appearance becomes quite typical with a apple-shaped body and buffalo hump atop stick-like legs.

Most people will have some of the steroid effects but if you show too many and they get very bad, you may need to consider stopping taking the steroids, trying other drugs to remain mobile whilst reducing the pred. I have heard of doctors getting iffy about patients being on steroid just because of the chubby face but that seems rather OTT to me - if you look around you there are plenty of people with the moonface look and I can't believe they're all on steroids! But it is also important to keep an eye on how you are in that way.

EileenH

Eileen

Hi Lizzie Ellen , Mrs K. & Eileen.

Thanks for your input most helpful.

I understand the cushingoid now.

These E.S.R.& C.P.R. are really a guessing game everyone of us is so different.

I was told I had G.C.A too, but after being on high dose steroids [50mg,] I have no symptoms now, only P.M.R. though I guess it could come back once on low doses.

Taking each day as it comes now, accepting was the hardest part for me, after being so active & my husbands carer for so long.I read about the long term a lot of you have on this site with P.M.R & I realised I have to accept it or I'll go crazy.

I turn my moon face into a joke to make my grandchildren laugh as one was quite upset to see Nana looking so different.

The weight is now 12 stone , clothes are difficult to find to fit me in my wardrobe, so great excuse to have a spend up!!

Have a huge chocolate craving on times, so again reading your messages , have turned to apples, & any fruit to curb the cravings.anyone mention exercise & I say wash your mouth out with chocolate!

Exercise is a thing of the past at the mo', roll on even feeling I can do it again.Oh to be a 7stone weakling!

thanks all for being there for me , much appreciated.

Cheers Amycakes.

If only we could choose our steroid reactions! I could live with a bit of extra weight but still stay within 5lbs of my normal weight whatever the dose. It's the mood swings and the feeling of desperation that gets to me; also the weak legs. On 5 now and the weakness has gone but still get panic feelings.

Amycakes, I'm with you on the difficulty of being accepting. I just am not. I'm a \" rage, rage at the dying of the light\" person and always will be.. I hate to be helped and I hate being unable to do all the things that make my life a pleasure. HOWEVER, not all bad because some days life is almost normal and today is one of them.

And I got a £25 ERNIE this month :magic: :cool:

Hi,

CRP 2 as well Eileen :yikes: I'm sure that somewhere in the depths of some report it will say that an ESR and CRP score of 2 is 'abnormal' and I'll have some terrible fate awaiting me at some time in the future :huh: I don't think my levels have gone into double figures ever, hence my Doctor's doubts - she would say 'I just know you have PMR but science is saying you don't'. When I saw the Consultant she said ' if it feels likes, looks like, tastes like and smells like, then it almost certainly is' (didn't think I was smelly, so hoped she was using it as a euphemism :lol: ) She said in cases like mine where blood results are no help she always uses Prednisolone as a diagnostic tool. Must go, great lump of a Grandson to get out of bed and give breakfast to. Where's that cute little boy gone :wah:

Love from Lizzie xx

Hi all,

[quote] \"Oh to be a 7 stone weakling\"

I have not managed to get back above 8 stone since being on the pred....but \"weakling\" is a very accurate description :cry:

I would happily put on a stone if only I was guaranteed some energy with it :? :wink:.

I find myself turning down invitations now because I know full well that I will be in bed exhausted by 9pm.....and I used to be the type that was up until the small hours with not a thought about sleep :roll:

We are all different at the end of the day, with diffrent reactions to both our illness and its treatment.

Lizzie....that cute little boy is still in there, just the teenage hormones are blocking the view :wink: .

My \"baby\", who is coming up to 18 in August, is in a show jumping and Dressage competition this afternoon :P so I will be doing the proud mum on the sidelines and hoping she doesn't have any falls :wink:

Love to all, pauline.

I think I was 7 stone when I was born (actually my Mum said I was 11lb but she did have a vivid imagination!!). I have been 11/12 stone since age 14 and mostly in size 12 (often a size 10 up top!!). No idea where my weight is stored. Mum used to say my bones were filled with cement. I used to be as strong as an ox, I remember carrying a double wardrobe, on my back, up a flight of stairs having got impatient waiting for hubby to return home and help. Now? Weak as a fairy :cupid: (nearest I could find to a fairy!) and very frustrated by it. Just about to take the 'hunk of testosterone' home to his Mum, can't believe its just over 3 weeks since his operation :doctor: Got to leave early, he's got a date at 1.30pm!

Love from Lizzie xxx

A really interesting read re ESR levels etc........ At my worst re pain and immobility it was 12! The recent one was 9........... so neither my doc or rheumy take any notice of it

Six months into Prednisolone I have a wonderful puffy face, peach fuzz which grows longer by the day and my nine stone 2 pounds has gone to 11 stone :shock:

I try hard not to be concerned as know most of it is transitory but not a good look!! :lol: :lol:

But I would rather this than the pain pre PMR diagnosis etc Life is all about balance...

Take care everyone.....