Waiting for the blood test

Hello All

Luckily I havent had a problem with steroids Cacium or Alecdronic Acid Careful that I take them with food and try to take Calcium at lunchtime so as to have the 3 hour gap with steroids Dont like taking the Alecdronic Acis as cant lay in bed waiting for my cup of tea to be delivered but have to get up first thing and stand up or sit upright Glad its only one day a week !!

I find it strange that as Surgeries have Computers and that prescriptions are done by Computer that contraindication medicines can be prescribed

Had quite a busy weekend with the horses and still feeling OK on 10mg A week tomorrow so heres hoping .....

Best wishes to all

Just checking for 'visual verification code' :lol:

Didn't find one :?

Hello Tills

I was on steroids for 2 years with my first bout of PMR but still had a relapse 3 years later So another theory out the window !!!!

Tills, I saw that info about the suggested 2 years on steroids......have the powers-that-be changed their minds? It's contrary to all I have read or been told over all these years.

However it does raise the point in my mind again regarding those 'lucky' text book types who get diagnosed with PMR, take the Pred for the year or 18 months and are then 'cured'. So many of them seem to relapse later, I've always wondered if it was a remission rather than a cure. I know I have been told that there are no remission times with PMR, but from my own experience I doubt that statement.

From that point of view, staying on low doses of Pred for perhaps an additional 6 months must be the lesser of two evils!

Not only am I one of those who have never, ever had raised inflammation markers, but the onset in my case was exceptionally slow and gradual - years rather than months and it is all fully documented by my early visits to the surgery only to be fobbed off with offers of anti-depressants and painkillers and told that I was either neurotic or hysterical.....those were all male doctors, by the way. Oh, and when I was finally diagnosed at age 56 I had the usual reaction from one of them - I was 'too young'. As the letter from the consultant had stated that the onset was thought to have been at age 52/53 when I first started complaining, maybe he was feeling guilty!

Nefret

Hi to all.

It is fascinating how we all have the same thing but our history and reactions are so different.

Mrs G, you could be the exception which proves the rule! I wonder what the statistic are for relapses with two years' medication compared with relapses with 18 months of fewer?

Nefret, like you my blood markers were low and my PMR came on gradually over a year after a severe chest infection.

Think a very low dose of steroids for two years is worth the risk.

Tilly

Hi all! This thread could be entered for the Guiness Book of Records at this rate! However - at least we can keep looking back at what has already been said which IS the idea of a thread.

Visual verification - appears immediately below the box we write the reply/experience in to post it - blurry background with a selection of numbers and letters in upper or lower case, to prevent unauthorised access???? I'd not noticed it or had to use it before yesterday. Not that that means much!

The 2 year taking steroids bit - the official line is that PMR \"burns out\" after 2 years or so in most cases. The steroids don't cure it, they make the symptoms livable with which I suspect accounts for this 2 year figure you found on the NHS site. When I look back rather more years than I care to admit to, my grandfather almost certainly had PMR along with a whole range of other comorbidities. His hands were very knobbly - osteoarthritis they said. He was very stiff, mornings and after sitting for any length of time - rheumatism they said. When my PMR started in earnest the first thing I noticed was joint pain in my fingers and a couple of the joints have become typically osteoarthritic. I was terrified my hands would end up like his and asked to see a rheumy to find out if there was anything that could be done. She said yes early osteoarthritis, no nothing to do. I saw various other practitioners with the stiffness and joint pain which spread to other joints. No-one saw the whole picture and I gave up and adjusted my life to deal with the limitations and did things with gritted teeth and sat and did not a lot an awful lot - literally!

Two years is about the length of time anyone is likely to keep going to the doctor with the various complaints we have with PMR and take being told it's in your head, you're getting old, your bloods are fine, there's nothing wrong, you're depressed. So - does the PMR burn out or do we?

Nefret - I too was in my early 50s when it first got bad, but I'm sure I've had something very similar since my late 20s. I had an attack of what fits the ME tick boxes (chronic fatigue syndrome) before I had my first child and was ill for about 6 months before a very slow but steady recovery over about 4 years to \"normal\". However - I always had minor bouts of the extreme tiredness and sore muscles but put it down to bringing up 2 kids and working parttime whilst my husband built his scientific career and didn't \"do\" the modern father thing! I have had back pain the whole of that time - until I started the steroids and it is returning very slightly since I started reducing the dose. I have spent hundreds of pounds on my osteopath and Bowen practitioner who kept the muscle tension and referred pain in reasonable control until last spring when I was hit by a ton of bricks! Even then, it was put down to a muscle spasm (from a night on an A&E and AMAU bed)! The really funny moment was when the GP (the one with NO bedside manner) gave me a prescription for suppositories for pain relief! Even my nurse daughter refused to administer them to her mum! And there was NO chance of me doing it :-)

I do know that there is a train of thought that all these things - ME, chronic fatigue syndrome, fibromyalgia, PMR and a few other things are part of a wide continuum of syndromes which are thought to be auto-immune in origin, and that there may be a link to hypothyroidism and some other diseases. The first 4 all tend to get a reaction of \"wibble, hysteria, imagination\" from some doctors but I know there is one consultant who specialises in ME-related stuff in the NE who will treat his patients as being hypothyroid on the basis of the clinical picture even though the blood results do not support it - and is successful in relieving some of the symptoms. Hypothyroid is one of the diagnoses that needs to be ruled out with PMR - but it obviously doesn't respond to steroids.

I think the big

Hi Eileen

Like you and your father I have bony outgrowths on my fingers, the first joint of each finger being affected. I was in my late 30's when I first experienced severe pain in one index finger and very slowly a swelling appeared on the first joint. Once the swelling arrived, thank goodness the pain disappeared, and that feature has eventually spread to all fingers. I have a very elderly neighbour who has very large ugly finger joint growths but she has never suffered any pain and at the age of 90 this year is still down on her knees gardening! I do therefore hope that although you have the growths your hands will remain pain-free.

MrsO

Hi, Eileen, I agree completely with what you say......I was diagnosed hypothyroid about 14/15 years ago and thought no more of it at the time as both my mother and grandmother were also diagnosed at roughly the same age as me.

Since that it seems to me that everything else has gone downhill! PMR followed next, then late-onset asthma, diabetes - all the other probs, depression, osteoporosis, DVT, polyarthritis have all joined in during the last couple of years.

I feel strongly that there is a link between these auto-immune conditions including Fibromyalgia [i:9f155bcb02]somewhere[/i:9f155bcb02] along the line. I have felt for some time that my thyroxine dose needs to be put up but when I have put the question, I'm told that the blood results don't show anything......

I also agree that quality of life is the most important thing for our particular generation. We are probably the first 'older' female generation with sufficient education in general to query and question those who previously would have had their words taken as gospel.

I know if I was told that I had to remain on 5mg Pred for the rest of my life, I wouldn't lose any sleep over it. (I might keep fighting to get it down, but that's me!). I'd much rather have 10 useful purposeful years than 20 as an invalid unable to cope for myself.

Also agree wholly that management of these conditions is the key.....if it cannot be cured it can surely be controlled with proper management; not enough research is done on this front with all these AI conditions.

Nefret

Comments, various on this \"record\" thread.

I think the verification only appears if you forget to log in. I seem to remember Eileen appears as \"guest\" in some of her posts.

Eileen and Mrs.O. Knobbly fingers. I have had these for more than forty years, too. At first excruciating but now just stiffish without pain. Cannot play piano any more.

Mrs. G My first episode was treated for three years. Starting dose 30 mgs. Tapering went smoothly. No relapses and VERY slow reductions towards the end. After that 5 symptom-free years but it returned 2 years ago. Not so good this time. Several relapses and hideous adverse reactions. Starting dose 15mgs.Tapering did not go smoothly, who knows why? Haven't taken any pred now for 12 weeks. More of this on \"No Prednisolone\"

Nefret. Happy retirement. I still don't miss work after 20+ years! Good luck with the move and watch out for the coat hangers; they breed, too.

Hypothyroidism and tests. I really wonder about these tests. A friend in her eighteis had many of the symptoms; thin hair, always cold, often tired. Being a do nothing type was never tested until she broke her arm. Fracture reduction and healing was perfect and quick but severe shock resulted in three emergency visits to A+E where all the usual tests were done and pronounced \"normal\". Then, out of the blue, GP found low thyroid and prescribed 75mcg thyroxin with magical results. Far more energy, better sleep and appetite more all-round enthusiasm. This must have been the fourth test. Perhaps we should not take no for an answer but it's hard if you don't have a medical background to query what you are told.

Hello Betty E

I am just pleased to find a few others who have had this twice as we do seem to be quite rare !! Thankfully

I started the first bout with 20mg and reduced tp nothing after 2 years with no hiccups at all on the way This time again on 20mg but ups and downs and of late more downs !! I had managed to get to 4mg by Dec which was 14mths in I upped that to 5mg to cover going away for Xmas but in the winter snow anbd very stressed I ended back up to 15mg Now back on 10mg

Not sure what will happen next I think in some ways I found it harder to cope with this than some \"\"novices \"\" as I had such high expectations that it would all go smoothly !! I am now coping better mentally with it and it is a case of what will be will be

My BP is up a bit and so is my weight but I am lucky that is all so far Am feeling a bit more active also so thats an improvement

I will read your other posts Best wishes Mrs G

Hi Betty!

Thanks - I did wonder about the log-in bit but I'm supposed to have been logged in automatically - so who knows what happened, it's a computer!!!!!!! :-P

I realised after I posted about the joint pain - it actually started in my big toes would you believe? I couldn't bear to wear proper shoes for about 4 years and then it stopped as suddenly as it started. It's only the distal joints of my index finger that are swollen but other joints get sharp shooting pains - except when I'm on a slightly higher dose of steroids.

Hypothyroid - there are various tests and the GPs do the bog standard ones which are less sensitive. I also wonder about another aspect which is the receptors which the hormones attach to to have their effect. My gynaecologist in Germany years ago said that he found patients exhibiting signs and symptoms of the menopause whose oestrogen levels were apparently \"normal\" but who responded to low dose HRT and he was convinced it was a receptor problem.

Something I wondered about recently is the fact that PMR is named because of what it is - many muscles hurt, in Latin! Is it a rheumatologist who should be dealing with it - or should an endocrinologist be involved or even the immunologists? There's a new thread started by someone who has eliminated wheat after reading about coeliac disease and the tiredness associated with that and successfully relieveing the tiredness though not the pain. That's also an autoimmune disease and in fact I react to modern commercialised wheat with a lovely rash so I don't eat it and haven't done for 4 or 5 years but that has had little effect on the PMR unfortunately.

So many theories - so little known!!!! I was quite lucky in having a GP who was willing to discuss things without getting upset at my questioning and we would google things together at the practice - sorry to everyone who was behind me in the queue!! But there is a terrible loss of clinical skills and desire to stick to the chemical answers - can't be anything wrong - your bloods are fine! And the depression bit - part of PMR according to the rubrics!

And Nefret - wholehearted support BTW for enjoying retirement! We're not properly retired, just from the NHS, and both work freelance, me part-time and him rather less part-time doing his research interests which are his lifetime hobby. But it's SO much better a life! Highly recommended!

EileenH

Hi All,

I posted late last night but that one seems to have disappeared too. Like you Eileen, I assume I am automatically logged on but clearly I need to check this before I hit submit and it all disappears.

The same things keep coming up:

Hypothyroidism - got that

Bony outgrowth on index finger - got that

Back pain - got that

Tiredness - got that - although I have to say I work too long hours

Hay fever - not mentioned so far but have that too!

Not to mention the sypmtoms of PMR.

Good job we all have each other!!!

Having gone back to 15mg from 10 mg, I am beginning to feel human again. The deterioration within 24 hours was frightening.

Tilly

Hi Tilly!

Yes - but the tiredness from working hard and the tiredness that comes with most autoimmune diseases is very different isn't it. You recover from the \"normal\" tiredness if you have a chance to rest but the PMR etc version is there when you get up in the morning and nothing relieves it. However - all these common signs and symptoms are quite interesting.

So glad you went back up and are feeling better. Once you can sort out your GPs ability to prescribe you the right things make sure you have 5's, 2.5's and 1's in a reasonable quantity and after being on 15mg for at least a few weeks try reducing by 2.5mg on alternate days and see how you get on - if that doesn't work try a 1mg reduction, again on alternate days. Others are trying reducing by 1mg on one day a week to start with, then 2 days a weeks - although that is usually going down from about 10mg/day. It really can't be emphasised enough that we are all different and respond differently. The fact you seem to have quite a stressful job almost certainly isn't helping but if you have any opportunity I must say I found Pilates (with a good teacher) and Iyengar yoga (is that the right spelling - it's the postures version of yoga, anyway) were both helpful for both the pain and stiffness and to relax actively if you see what I mean.

cheers, EileenH

Hallo all.

Re the log in; I think the little box we tick asking to logged in automatically only works if the computer is not switched off. Mine seldom is, just hibernates because I cannot wait and wait and wait for all the stuff to reload every day. My machine is like its owner, not in its first youth. Sometimes I wonder whether I should say incarnation. When Microsoft gets bossy and restarts WITHOUT PERMISSION after updates I have to relog in.

Mrs G.Our experiences seem to mirror each other. I, too had a plain sail through and a long remission. Like you I was ful of optimism that history would repeat but, of course, it seldom does. It gives me heart to read that you are coping better mentally, as you put it. This is what was such a shock to me. To have always been a coper ( or bossy, if you like! ) I could not live with the feeling of inadequacy and dependence that my problems inflicted on me and friends, family and neighbours all of whom I am lucky to have. One, a R.A. sufferer gave wonderful advice which I try hard to take but we don't change the attitudes of a lifetime in our seventies. I do think that the Pred. had a lot to answer for, too, in my case and the \"head\" problems have eased considerably since I stopped them on 15th Jan.

Eileen,I must read up hormones and receptors. Your knowledge is so relevant and, as they say, knowledge is power even if we only learn enough not to be fobbed off. I really hate being patronised and wish I had my sister's courage when she told a very supercilious young doctor that she, too, just like he, had a science degree! She moved shortly afterwards. Well, it will keep the brain cells exercised. They have only just finished a crash course in Banking. Nothing. too cerebral; enough to guard against being ripped off too easily, though.

Nefret re 2 years on steroids.

The powers that be are ALWAYS changing their mind which you would not mind so much if they were not always so ready to pontificate about the new idea without a blush or admission that they were wrong last time and just could be again. What was th nun's prayer that begins \"Lord help me to accept the possibility that I may be wrong ? Must look it up. Perhaps it could be on the wall of every surgery rather like the notice at Cambridge Vet. School Hospital. \" No act of kindness, however small, is ever wasted\" Fat chance. That's enough of me for one night. Good night everyone. Back later. Betty