Never a days illness, now this!!

Hi Margaret. So sorry to hear that your husband is in so much pain. My PMR started in May last year with severe shoulder ache, I put this down to a frozen shoulder which I had suffered from in the past. A few months later the other shoulder started to ache and within a few days I couldn't turn over in bed, struggled to get out of bed and would sit on the side sobbing with pain and stiffness. This would wear off as the day went on and by early afternoon I would feel a lot better. My blood tests didn't show up much inflammation so I wasn't diagnosed until I had a private appointment with a Rheumatologist. She put me on a six day course of Prednisolone to see if this had any effect (one way of diagnosing PMR especially if your bloods don't point to it) and within six hours I was a different person. I've never really had much pain in the hips (which I know a lot of people on this site suffer) and I've been out of pain for months. I did get very depressed early on and I can understand how your husband feels if he's never had an illness before, you just can't believe its happening to you. I have small setbacks and sometimes severe fatigue - PMR has a mind of its own, so no two people seem to react in the same way. You will get lots of help, advice and sympathy on this site. I do hope your husband's appointment goes well tomorrow.

Regards Lizzie Ellen

Hi Margaretann!

Sorry to hear of your husband's problems but here is a brief summary of the symptoms (off the top of my head) to keep you going. You will be able to find further details on the North East PMR-GCA support site but if I put the link the moderators will either remove it or delay putting this post up so this should be quicker. You'll find the site via Google and it has \"Guidelines for diagnsois of PMR\" which you can download and take to your doctor.

PMR is diagnosed on the basis of the clinical picture and should be considered if you have at least three of the following set of symptoms:

stiffness in the shoulders and/or hips

stiffness in the mornings which lasts more than an hour but improves during the day

return of stiffness after sitting/remaining in one position for a relatively short time

low mood/depressive feelings

night sweats

pain in the large muscle groups (i.e. thigh muscles, biceps)

raised ESR and/or CRP (these are blood tests but are not 100% reliable)

joint pains due to bursitis, some joints may swell

weight loss

general malaise and feeling unwell

extreme fatigue not relieved by sleep/rest

It is very common to find it difficult to get out of bed, climb stairs or raise your arms above shoulder height. Sometimes it starts suddenly, literally overnight, and resembles a flu-like illness, sometimes it creeps up over a longer period of time.

It responds very quickly to a moderate dose of steroids (15-20mg/day) with the symptoms improving by up to 70% within 24 hours or so and this is characteristic of PMR. Non-response suggests it is possibly not PMR and many doctors regard this rapid response as almost confirming the diagnosis. Other diseases may have similar symptoms (hypothyroidism, rheumatoid arthritis and a few others) but don't respond to the steroids so dramatically.

I don't think the X-rays will show anything in PMR. Men tend not to be typical in the way they present with the disease or in the way they respond to the steroids. It is also far less common in men. The steroids don't cure it - just make the symptoms liveable with.

Can't think of anything else significant at the moment - if I do later I'll post again! Go with your husband to the doctor ('cos men are hopeless with their health!) and don't be fobbed off with any rubbish like \"It's just old age\"!! If you aren't satisfied, ask to be referred to a rheumatologist and if you have any problems with that request, see another GP. One of our \"senior\" ladies (in knowledge ) reminds us on a regular basis: you pay your GP's salary. (S)he is there to look after you and be your advocate. If (s)he isn't doing that properly, remind them of their job.

Good luck today, keep us informed of your progess through the diagnostic journey. I (and others) will be keeping an eye out for you here. We'll deal with the coping side once you've got that far! But basically - listen to your body, don't overdo it even when you feel quite good and if it is PMR - he'll feel loads better once he gets treatment. Don't over-expect though, it's not necessarily a 100% improvement.

best wishes,

EileenH

Hello Margaret, I do sympathise - I sometimes think we suffer more for our loved ones than when we have the problem ourselves! One never knows another one's resources and the fact that your husband has been the one supporting you in the past does make it more complicated.

Two things:- find out yourself as much about PMR from this site and others as possible.

Second:- it often seems (tho' not invariably} that men don't seem to suffer quite as much from PMR, and not quite as long as women. So some of the posts on this site don't apply.

Anyway all the best, keep in touch.

green granny

Margaret

I do so hope your husband does not have PMR but do visit www.pmr-gca-northeast.org.uk.

Under Useful Information are the diagnostic procedures and lots of other information. There is an email support group, run by John Ladlow specifically for men.

But, this site is the place to ask the 'questions' that will arise. There is a wealth of experience to be tapped here. Come when you need to, somebody is always here to help.

Hi everone

thanks for all your help, i could not believe that there was anyone out there that cared. As i said my hubby had an appointment with docters today,docter said it could be polymyalgia rheumatica, but he wanted more xrays. This time on the neck just to see if the pain is due to a injury in the past. But i know that he has pmr by all the symptoms he has. Symptoms that you told me. the docter has put him on predinsolone as you said, so we will wait and see. we need a name to this. Docter put on his insurance.line shoulder pain his work will look at his line and say is that all hes got.As he drives the large bin moters and he cant manage the steering wheel he cant manage. he has even sugessted taking early retirement as he is so tired but i dont know if we could afford that. Anyway thank you all and i will keep you posted Margaretann

Jings, crivens... - right then, Margaretann!

You're in the right place - one of the founding support groups for the national charity is based in Dundee, one of the lovely ladies lives in the Ferry (just she calls it Broughty not Brotty!). MrsK has given you the link to the main site and you'll find them from there. They have meetings every so often but there are people to hold your hand nearby - a forum is great but not the same as a personal hug!

It seems from other posts on this forum that PMR comes under disability regulations (untreated it's certainly a disability) and that will have some bearing on the way he is treated by his employer once the diagnosis is right - who is it, the City? I couldn't even begin to think about being a scaffy with untreated PMR even if he just drives the thing! An HGV is an HGV! But it is quite possible that he will be able to drive OK once the bursitis that is the cause of the shoulder pain is dealt with as I assume they are automatics with assisted steering. Don't do anything in a hurry - you'll get statutory sick pay at least and other benefits may be possible if he doesn't get totally back to normal. Take one step at a time. The stress of worrying about how you'll manage will only make the PMR worse - any stress does.

Where are you in Dundee - years ago I used to live in the Forfar Road and latterly in Meigle, now in northern Italy! My brother is also just outside, used to be a baker but now drives buses for a change!

Keep in touch, let us know how you get on,

all the best, EileenH

Margaretann

Yes, you are located in the right place and the website you want is www.pmrandgca.org.uk. PMR and GCA Scotland is a registered Scottish Charity.

The Disability Discrimination Act.

This is the advice I was given by another patient of PMR who had problems at work and had asked the question and been given this reply.

\"I do not doubt that the Disability Discrimination Act (DDA) is likely to apply.

The Act requires individuals to be considered in the absence of treatment and pmr symptoms would be disabling without treatment and would be likely to continue for a significant period of time within the timescales defined by the Act\"

If necessary print out a few details on pmr and give them to your manager so they have some idea of what it is.

Also another Support Group assisted a person and it went to a tribunal and it was a success. So do not give in too lightly.

I and others I know also have applied for the Attendance Allowance successfully.

Finally, remember that each Council has an Adult Caring Service, use it if necessary as sometimes adaptations to bathing etc are necessary.

Hi Eileen you said broughty ferry, thats 5 mins away from me small world will get in touch [send a new post tom thanks MARGARETANN

Hi everone its margaretann again. I have to thank you all again you have been great i gave all the information you gave me to my husband and it helped to bring him out off his depression hes certainly not so down as he has been, my husband Jim has taken his predinisolone [have i spelt this right] its terrible to be stupid hee he. Now as i said Jim has taken his tablets for 1 day and allready the improvement is amazing he has to take them for 3 weeks before going back to his docter but his mood change is so noticeable. Now i need to ask the big question what now? does he have to take these tablets all the time now or is it just a course,and if so what happens next. And what about the prognosis long term is it life threatning,? what does it do to you does it thin your bones? is it a type off athritis? like i said its terrible to be stupid. im sorry you must think i am so thick in the head, and i dont want to depress everone by asking these silly questions but until i week ago, i havent even heard of this condition i just want to think how this is going to affect our lifes,as i dont have good health myself. I am so worried about the future as jim is the bread winner. and i am on DLA. :? you have allready helped me and i am so thankful for all your support, i will keep you posted how Jim gets on with his medication, as long as your not fed up with me asking all these questions,i hope not because im going to need your support but thank you so much all off you MARGARETANN

Hello Margaret Ann

I first had PMR when I was 54 and it went completely in 2 years of taking steroids Unfortunately it came back again when I was 60 and I think it will take a little longer to go this time

Your husband will be feeling more cheerful as the pain will have gone and being able to move in the mornings to get out of bed is an amazing feeling !! I used to cry when I turned over in bed in the mornings with the pain You also never knew what to do with yourself as if you sat for any length of time you had trouble getting up and walked like Dick Emery in high heels ( if you remember him!!)

If this is PMR your husband will be put on a reducing steroid dose over a few years with regualar blood tests to see that the inflamation rates are staying down He should have blood pressure checks weight checks ,diabetes checks and also bone scans There are people on here who have far more medical knowledge than me but you are given medication to protect your bones Calcium daily and a weekly tablet mine is called Alecdronic Acid If any of these tablets effect your stomach other medications can be given but I like a lot of people on here take a low fat probiotic natural yoghurt every day Steroids do have a lot of side effects but most people get away with very few of them

It is a lot to take in but basically if it is PMR he will be on steroids for a few years and your husband will have time to learn to help your body to live with taking them Steroids make this illness liveable with for most of us and the most of us function fairly well In January I had a really bad time in all the cold weather and really had to up my steroids and was very depressed with it all but now I am feeling a lot better

Your husband will have to remember that even though steroids make him feel he can do so much more he must rest ( we all say pace ourselves !!) and you do sometimes get these real patches of complete exhaustion which dont seem to relate to what you have been doing and you just want to curl up so you just have to remember you have an illness and look after yourself

It is an immune system disease and ( I think ) it is your immune system attacking your muscles so the steroids stop that and shut the attack down ( in simple terms Poly means all My means muscles and and Algia means ache ) It is not life threatening and an awful lot of people get over it completely but some people ( like me ) it comes back

I would rather have this than a lot of other things Being 62 I have many friends who have illnesses they wont get over including cancer .crippling arthritis and Huntingtons disease and my sister in law has a very rare immune system disease also

There are lots of people on here who can give you more information about another illness GCA which can be a complication if you dont get the steroid treatment and about his diet and PMR/GCA fighters north east is a mine of information and you can ask any of us anything you like

We all share the ups and downs on here and any queries we have With so many people seeing different Drs and Rheumatologists we get lots of different opinions ( I went to my Dr with my suggestion for my current steroid reduction Prog which I had found on here ) and fingers crossed its working !!

So ask away there is always someone to help

Best wishes to you and your husband

Mrs G

Hello Margaret

I am almost 60 and I have had PMR for just over two and half years. Been on steroids for almost two years I may be one of the lucky ones but I am down to 3.5 mg. Yes it has been a bumpy ride but I have worked throughout, also a busty family and social life only having one week off sick when first diagnosed which took a while Admittedly my immune system makes me prone to infections and have had a couple of chest infections . You do get good days and bad days but on the whole it has not affected my life too much. You do have to pace yourself and not overdo things. I also take all the calcium tablets etc. Try not to get too tired.

Life does go on and mostly you can live a pretty normal life and the main thing is for your husband to feel positive. Hopefully your husband should be able to keep working it may be more difficult if he does manual work. Although I feel better the more active I am.

Good luck to you both and there are a lot worse things to have than PMR.

Linda

Hello Margaretanne

First of all, do not think for one moment that anyone on here believes that anyone else is stupid! In fact as far as PMR is concerned we all feel totally hopeless, helpless, ignorant and confused at the start of this illness not to mention the horrendous pain.......but then we find this wonderful forum where we all have learned from others' experiences with their GPs and rheumatologists and from our own journeys with PMR - in fact we all become 'experts' from the knowledge we gain (or like to think we are :lol: !)

Mrs G has given you lots of helpful information which I'll try not to repeat. It is possible to recover completely from PMR within 18 months to 2 years and I have known of one sufferer who had a textbook recovery within 12 months.

Importanty, no, PMR is not life-threatening. However, there is a linked condition to which Mrs G has referred called Giant Cell (or Temporal) Arteritis which presents as severe headache, jaw pain and/or blurred vision or focusing problems. In the case of any of these symptoms it is important to seek immediate medical advice as this condition involves a much higher dose of steroids in order to protect the eyesight.

Do ask your GP or pharmacist for a Steroid Card which your husband should complete showing each reducing dose and always carry with him.

Although he will have probably been prescribed bone protection and stomach protection medications alongside the Prednisolone, it will be a good idea for him to take a live yoghurt with his breakfast before taking the dose as this will line the stomach and give it protection from the steroids. In fact, I wasn't able to tolerate the stomach protection meds and I have solely relied on the live yoghurt for the last 3+ years and so far so good, fingers crossed.

He has probably been prescribed between 15 and 20mgs starting dose. This dose does somewhat deplete our immune systems so it is important to avoid any known infections and particularly chickenpox from which it is easy to contract shingles. I take Manuka Honey Factor 10 daily to boost my immune system. However, I realise this is expensive and maybe not an option for some.

Yes, do keep us posted as to how Jim gets on, and, no, we are not ever going to get fed up with your questions - remember we have all been in the same situation and understand and sympathise completely with your worries.

Very best wishes to both of your and how wonderful for you to have each other!

MrsO

Hi Margaretann,

MrsG, MrsO and Linda have given answers to most of your questions - and like them, I'll say it too: No, you're not stupid, thick or anything else except confused! There are plenty of GPs (and, might I say, rheumatologists) who are pretty confused about PMR as well - even if they've heard of it!

It isn't a very common disease in itself but there are a lot of diseases that look quite similar. It is said to usually occur in people over 55-60, but there are quite a few people who are much younger and they may have had it for a long time before diagnosis as some doctors won't even consider it before you are 60. As I said in my previous post to you, the very quick and dramatic response to prednisolone is a feature of PMR and should be taken by your GP as confirmation that it is almost certainly PMR. In fact - if it were me I wouldn't wait for the 3 weeks to go back. Take your husband along to the GP and say \"Look\" as soon as you can! That dramatic difference often convinces the doctor. I kept a diary of the first week to show my rheumatologist who didn't think it was PMR - but I didn't see him for 6 weeks and he wasn't interested and still disagreed. It's my GP who deals with me now and your GP knows Jim well and how bad he was before.

He may want Jim to see a rheumatologist but it isn't absolutely necessary of the GP is happy with the diagnosis and to supervise his steroid treatment - and I'd think he might well be as he suggested the possibility of PMR. He probably won't have given him the calcium and Vit D supplements yet as they are for longerterm courses than 3 weeks. They are to prevent osteoporosis (which is calcium being removed from the bones) and need to be taken every day as well as eating a good diet. They are tablets to suck or chew, don't taste fantastic but are also not horrid (you DON'T have to swallow them whole, they are big!). Your GP might check his blood calcium and Vitamin D levels - they are often low in PMR and if so need to be brought back to normal before the other medication MrsG mentioned, the alendronic acid, can be given. This makes the bones absorb the calcium better so the blood level mustn't be allowed to fall too low.

As the other ladies said, Jim will be on about 15mg of prednisolone to start with and then the doctor will start to tell him to take a lower dose. You take a dose for a few weeks before trying a lower dose. The idea is to find the lowest dose that you are free from pain and stiffness. Some people have no pain at all, others have some pain that just won't go away altogether but they can manage OK, yet others have days when they are 100% and other days when they feel like they've been run over by a bus! No one can tell you \"it'll be like this...\" - we are all different.

Men often do not respond the same way as women - one gentleman member of this forum rides miles and miles a week on his bicycle, I can ski a few times a week every week in winter - but I struggle to walk far some days now in the summer. All of us will have days when we are almost as tired as we were before we were put on steroids. The big thing to remember is not to overdo it on a good day - or at least expect to have a couple of bad days afterwards when you need to rest more. With time you'll learn what Jim can do and not do - even on a good day I know I shouldn't try washing windows or changing the bedding, two things that really knock me for six!

Another suggestion: get a notebook and make a note of anything you find here that is helpful. It is possible to print stuff out or copy it to a file on your computer - but don't ask me how to do it!! If you make a note of the name of the thread (the series of posts which are linked) you will always be able to come back to Patient Experiences and re-read it but you can carry a notebook with you and update it at the GPs or if you think of something or notice something while you are doing it - ask a question about it later

Hi everone thanks for listening to all my problems. I think this illness is going to put us under We have sickness cover on our mortgage, but i told you on my last post that Jim was feeling really tired, and was thinking of talking early retirement. he had a pension off 22yrs in his last job before he was made redundent, he found employment right away and has another 16yrs+ pension with his present employer. you would think that a man that has worked all his days never missed not one day ,has never been off sick.his pension is worthless, he cant retire cant afford to his words is ,,,,i will have to work until i drop, it is making him even more depressed cant afford to be sick,,,cant afford to retire so what have we got, dont know. i am so worried about our future has anyone else been like this? MARGARETANN

Hi Margaretann,

Now then - time to think positively! I know that it all looks pretty bad at the moment but this is still very early days. Jim will improve loads from what he has been at but you must give it a bit of time. Get back to your GP, both of you together, and tell him/her what you have said here. Judging by the time you posted you're not sleeping - and that won't help either. There are other people here who work with PMR - I will grant you they possibly don't do a manual job and there is a big difference from that point of view.

Also, by going back to the doctor NOW, you should get a sick line that says PMR rather than just \"shoulder pain\" as Jim's response to the steroids was absolutely typical for PMR. It is likely then that he comes under the disability discrimination act which gives you some rights!

You also need to find out about what exactly his sickness entitlement is - time off, pay and so on. I can't tell you about benefit entitlements but that's what the benefits office should be for. Someone else will pop up here probably and say something about that.

Sorry - can't write any more just now but don't get too down, you'll just feel even worse :-) ,

best wishes for now,

EileenH