Never a days illness, now this!!

Hello Margaret Ann

I cant really say if it is anything to do with the steroids or not but it is not something I have heard of

In my opinion ( and obviously I dont know either of you ) it could well just be fighting against the fact he now has an ILLNESS As others have commentented the majority of men dont accept illness treatment etc as well as we do and in my experience try to ignore it

I think most of us who go on to steroids and feel so much better after all the pain feel pretty happy just being able to function again I can remeber those first mornings after steroids being able to turn over in bed in the mornings without crying with the pain Bliss !!

Hope all goes well with the DR

Best wishes Mrs G

Hi Margaretann!

Yes, mood swings are one of the side-effects of steroids. The quote below is one that took me 1 minute to find with Google and is from a lady with severe asthma who was on a much higher dose of 30mg (Jim should not be on more than 15mg according to the PMR treatment guidelines)

\"I have all the nasty side effects that are associated with steriods. But I wish I could control the mood swings. I become combative over the simplest subject. I get testy. My family and closest friends some time understand and let me have my space. I try to get out of people's way and stay to myself when I feel it coming on. I get very depressed. I feel unwanted and paranoid, which is an unbearable feeling. \"

Some people get quite bad mental effects from steroids but they usually improve once the dose goes down. It is recommended that doctors monitor patients on steroids at the start of treatment to catch this sort of thing and patients should be told what side-effects are possible so they can be watched out for.

When I started on steroids I was able to go down to 10mg a day quite quickly without the PMR symptoms coming back and your GP will probably put Jim's dose down as fast as he can which should help. If not, it is possible to treat it so the PMR doesn't get the upper hand again.

However - you're seeing the GP on Monday. Tell him about EVERYTHING, the speed of the PMR symptoms improving, the mood swings, the depression - never mind what Jim says because unless the GP has all the information he can't treat him properly. My mother and brother drove me up the wall - they'd complain the doctor didn't do anything but they hadn't told him half the story. GPs are not psychics!

all the best for Monday,

EileenH

Dear Margaretanne

Oh, poor you and poor Jim.

Yes the steroids can cause terrible mood swings and I have met one lady after the PMR Charity Launch in London who said her personality completely changed when on steroids and she had to come off them. She now manages to control the worst symptoms through beneficial herbs etc. She very occasionally posts on here and perhaps she will read this and join in.

The difficulty here is working out what may be steroid mood swings and what is just Jim feeling so down about being ill and not being able to accept the situation.

Do definitely tell the GP everything - he is the expert and he must take control of this situation which he will surely do when he sees how desperate you are.

It isn't long 'til Monday now and if PMR is definitely diagnosed I'm sure the GP will reduce the dose to a level that might lessen Jim's mood swings. It is going to be a case of trial and error and may take a little time to sort out but just hang in there knowing that things will get better - we are all testament to that!

My very best wishes,

MrsO

Hi Margaretann,

I've always been a very laid-back, patient, forgiving sort of person - and now? I can be ratty and argumentative (just ask my poor partner!) for absolutely no reason. My whole body and brain just gets irritable at times and I don't seem to have a lot of control over it. After a lifetime of being 'nice' I think I have to blame the PMR or the steroids. I also think it can become a habit and I appreciate it when my partner says STOP BEING RATTY! So I'm sort of with Jim and sort of with you on this one Margatetann. I'm trying very hard to be nice :wings: (couldn't find a halo so this will have to do!). I agree with EileenH you really must tell the Doctor everything. There is a sort of euphoria when you first start the steroids, the pain goes and I got quite high - then I came down with a bit of a bump and that's when I went through a period of depression and rattyness (I know its not a real word but it works!). I'm mostly OK now. I do hope things improve for you both soon, having been a carer twice in the last 10 years nursing my late husband and then my Mum I know how hard it is for you just as much as for Jim. Take care both of you.

Regards Lizzie Ellen

Hallo again Margaretann

I would have bet my house on the replies you have had to this post. No matter what symptom/side effect is posted, some will say \" yes, that's me\" and others will have never come across it. You do have to have some sympathy with the doctors. I am going to ask mine how many PMR cases he has had. He's had five years of listening to my complaints and has changed in that time. I think he really believes me now when at first was rathter dismissive. I have found it useful to keep a diary because it's so easy to forget to say the one thing that would have made a difference. For example, when I was first diagnosed over ten years ago ( got better in three and was clear for five ) at first my GP said osteo arthritis of the spine. I bought a TENS machine, went back as directed to check ok to use, saw a different doctor and happened to say that I had lost several pounds in weight. She did immediate bloods and rang next day to say it was PMR almost certainly. It was.

I became so ratty at one point that I swore never to take steroids again and did without for almost three months. The rattiness went away but the pain came back with a vengeance so back on the steroids. So far, this time, I have been able to reduce from 15 to 9under 2 months. Went to bed in a paddy last week because the pigeons had taken the tops out of the peas. \" Why do I bother?\" \"We shall have to move from here, I can't cope any longer\" Sulked all evening and was rotten company. It IS ahrd on those we live with as I don't have to tell you. Your Jim is lucky that you are so understanding and forgiving ( I am lucky in that department, too ! ) He doesn't mean it. Like me he had never been ill in his life but instead of counying our blessings, people like us resent the change and can lash out, not really at our nearest and dearest, but at fate, I suppose. I fume at my new limitations and say things like\" Ive never smoked or been overweight or eaten junk food etc. etc. until I, too, am told to stop ranting just like Lizzie Ellen is.

Best of luck to you both with the GP apppointment and if he doesn't agree to change the sick note I would ask for another opinion.

Hi everyone its Margaretann, Iwent to the docters with jim today and i now think im back to square one. All the time since jim has been on steriods he has been pain free,, or so i thought i was all ready to tell jims GP to put polymyalgia rheumatica on his sick note instead of sholder pain. was wanting a diagnosis today.When jim was asked have you had any pain while on the steriods, he then said he has pain sometimes in his arms,the docter said it cant be polymyalgia rheumatica as he should not have pain, [whitch he told me it was when twisting round to put a lamp off and was not painful it was uncomfortable. But because of this remark the docter has taken him off steriods [the only thing that put the pain away ]and told him to take painkillers when he was sore, , end of story and he was going to dismiss him with no further diagnosis. a sick line for i month [wear and tear] with sholder pain on his sick note.i then said as he was pushing us out of the door i wanted a second oppinion as i was not happy with todays outcome. He then said he would refer him to a rhumatoigest but said would take some time to see him. So meanwhile hes going to be in the same pain he had before.'[back to square one] All because of one remark hes taken him off the only medication that worked, What do i do now i just know thats what hes got but how do i prove it . he now says he is depressed more now than the begining of all of this.What do i do, because i am 99% sure that he has poly/rheumatica but what do i have to do that will prove that i am right.i am all mixed up at the moment,dont know where to turn,as i said in a earlier posting he doesnt do pain well., and i have to listen to all his mood changes god how am i going to cope i have my own chronic pain to deal with, and i am really worried about his job, sholder pain on his sick line does not go down to good with his employer, WHAT DO I DO now.MARGARETANN X

It also sounds to me like Jim has PMR. When I was on Prednisone for 1 week and went back to the Dr. (Rheumy) for follow-up. He asked how I was doing. I said much better. He told me to lift my arms over my head - but I could only get my right arm about half as far as my left arm. He said it takes some time to get rid of the inflammation [i:0db32cc396](my ESR or Sed rate was 85 in the beginning - where normal is less than 20)[/i:0db32cc396]. After about 2 weeks, I was 80% better, 3 weeks 90% better. It takes time.

I'm glad Jim is going to see a Rheumatologist. Hope he doesn't have to wait too long. Evidently medical care in the UK is much different than here in the USA. Unless we here in the US are on an HMO (health maintenance organization), we can pick and choose which Dr. and/or which specialty we want to go to [i:0db32cc396](of course our co-payment is higher with a specialist)[/i:0db32cc396]. I chose my Rheumy from a list in a directory and was able to see him in just 3 days of my call. If I was on an HMO, I would need a referral from my Internist or GP. That can take more time I understand. I've read here on the forum where the UK folks refer to Rheumy's as 'consultants'. They're just another Dr. here in the states... but of course they charge more because they're specialists. :roll:

This reminds me... one time when I was in to see my Rheumy I asked him about his planned treatment for me as I had read that PMR is pretty rare. He said, \"It's rare to you and the general public, but if you're a Rheumatologist you see it quite often.\" That gave me some comfort in knowing he's had plenty of experience dealing with PMR. He also said that every patient is different.

Good luck to you and Jim. Hope Jim gets in to see a consultant soon. :hug:

Hi Margaretann,

I'm sorry you have been messed about like this but I cannot imagine you have seen the only GP in the practice. The one you have seen is WRONG - the response you expect is about 70% within a short time. And 70% of a lot still leaves quite a bit. There are loads of people on this forum who will tell you they are still in considerable pain after quite a while of treatment - but just like you with your arthritis they carry on living. The trouble with so many men is they have never had much pain - if men had babies there'd never be any families with more than one kid would there?

I had 2 weeks at 15mg which was fantastic but I still had some sore muscles and a bit of joint pain. During the 2 weeks at 10mg there was a bit more pain and more again at 5mg but I could have lived with it. HOWEVER, withing 24 hours of stopping the steroids I was in as much pain as before starting them and had to go to bed in tears and although the rheumatologist was a bit iffy one of the GPs in my practice was quite happy to say, yes - PMR! I also see a GP here in Italy who worked in general medicine in the hospital here so has experience as a consultant and she is in full agreement.

But back to what you can do: if Jim's pain comes back really quickly then no question, you go straight back to the doctor - even the one you've been seeing so he can see the dramatic difference the steroids made. That's partly why I said to go back to the GP sooner to emphasise the speed of the relief Jim had - though I do understand why that didn't work. If the symptoms don't return then it's fair enough and both you and Jim will be pleased too.

BUT, if the symptoms start to come back gradually then the GP needs to start on looking at other things that might be causing the problems as there are several things which present with very similar symptoms. PMR is an autoimmune disease, like rheumatoid arthritis, thyroid disease, diabetes and a lot of other things. \"Autoimmune\" means that your body is attacking itself for some reason - no-one really knows why and that is why these diseases are so difficult to treat. PMR is also sometimes called a \"diagnosis of exclusion\" - and that is just a complicated way of saying that it is one of several diseases that look very similar and you should exclude all the others. Many of these other diseases also respond to steroids - but usually not as dramatically or fast.

As I said earlier, there must be other GPs in the practice - and you have a few rights there. You effectively pay your GP to look after you, he gets an allowance for you to be on the list and that comes out of the taxes you have paid all your life. There is also no reason at all for you to only see one doctor in a practice, there is no law against seeing a different doctor to the one you are \"registered\" with even though some practices will try and tell you that. That is something that appeared a few years ago when instead of being on the list of a \"practice\" it was decided patients should have a \"named\" doctor. Like having a \"named\" nurse in hospital it's fairly meaninglesss - you can still have care from someone else on their days off! What is often not approved of is you going to one practice and Jim going to another but that isn't the case here. Whatever - they have a duty of care.

As for the referral to a rheumatologist - it shouldn't actually take that long for the referral, but when you get an appointment may take a bit longer as we are now heading into the Scottish school holidays and even doctors have holidays which means clinics get cancelled. There is still a maximum amount of time that must not be exceeded though and unless it is very different in Scotland, you don't have to go to Ninewells, you can go to another hospital, Perth, in Fife, Edinburgh even if you can manage to get there. It is also possible to see someone privately even if you don't have private in

Margaretann

I have posted before on this and again suggest you download the diagnostic procedures from the website www.pmr-gca-northeast.org.uk.

And contact Contact PMR-GCA Scotland.

Either Jean Miller 01382 778 596 or Alison Jeffrey 01334 870 674

e:mail pmrandgca@hotmail.co.uk

website www.pmrandgca.org.uk

The details for this Support Group are also listed on this site under Support Groups.

This group has a wealth of experience and are all people who have either had or have PMR and GCA. Any many years experience in helping people to get a diagnosis.

Margaretanne - I'm so sorry your GP has been so dismissive of Jim and his problem. He has literally palmed him off without any definitive diagnosis and offered neither tests nor other treatment of any kind.

As Eileen has already said, steroids do not get rid of the pain completely - I am testament to this having suffered with PMR and GCA for over 4 years now and been on steroids for over 3 years. In that time I have never been completely pain-free.......almost but not quite! In fact, I have just returned from a physio appointment for muscular pain in my right shoulder blade and arm area - this may not now be related to PMR but a knock-on effect with weakened muscles finding it hard to cope with too much aggravation, plus I'm not getting any younger :lol: !

I would ring the Practice and get an appointment with another Dr asap - you are entitled to a second opinion. Although I am registered with a particular GP, he has told me that we don't belong to any specific GP but to the Practice.

Mrs K has pointed you in the direction of an excellent website - do look at it and print off a copy of the PMR Guidelines and take it to the GP. Unfortunately, there are many GPs who have never come across a case of PMR or GCA (which is linked to PMR) - it took 4 visits seeing 4 different GPs at my Practice before the final one diagnosed GCA and said he had to put me on a huge dose of steroids to save my eyesight.........and it was only then with instant referral to a rheumatologist that I was also diagnosed with PMR which had remained undiagnosed by GPs and a rheumatologist for the previous year! Following this experience you can understand that I now say what I want to them without worrying what they think of me - it's my body, and, as Eileen has said, we have worked hard and paid in for years for the treatment that the GP is well paid to provide.

Right, I'm sorry Margaretanne and everyone, but I'll get off my soapbox now (I'm very easy going really :lol: ) but I just wanted to get the message through to you - I'm sure you respect your GP but in return he must show you and Jim the respect and care that you deserve.

Keep in touch and hang in there because there will be a successful outcome to all this.

MrsO

Dear Margaretann,

I just wanted to reinforce what MrsK has said in her last post and it also occurred to me that you might not have found the 2 most important bits for your doctor on the PMR-GCA Northeast support group site as it maybe isn't too obvious what they are to someone new to the game.

Go to the PMR-GCA northeast support group site (MrsK has given you the link so it's easy to find, just click on the address in her last post). On the home page (the first to come up on your screen) look down the lefthand side and you'll see a list of different things to look at. Click on the \"Useful Information\" heading. This will bring up a page with a list of articles for you to download as pdf files - you can save them on your own computer or just open them and read them on the screen.

The two most imortant for your GP to read are the \"BSR & BHPR Guidelines for the Management of Polymyalgia Rheumatica\" and \"The Burden of PMR\".

The first is the officially approved guidelines which describe the symptoms of PMR and how to dose with corticosteroids and follow-up the patient. The second is a medical publication which reviews studies done on PMR. Both of them are written by doctors for other doctors so I don't expect you have read them - and neither has your doctor if he expects a 100% reduction in symptoms after 3 weeks because it says quite clearly that this is not so.

Download them and print them out - if you don't know how to or haven't got a printer I'm sure Jean Miller or Alison Jeffrey will help you out. They are lovely ladies if you haven't already contacted them. Then take the articles to one of your GPs in the practice and tell them you expect them to read them.

Now it's up to you,

all the best

EileenH

Hi Mrgaret Ann

Sorry you are so down and Jim seems to be ignored One thing you havent mentioned ( I dont think ) is blood test results ?? If a Dr is being dismissive he possibly wouldnt be bothered to do them I know its not a 100% diagnosis for PMR but the raised ESR and CRP levels are an indicator something is wrong

I was one of the people mentioned who went to see a Rheumatologist privately and it was the best £140 I have ever spent !! When I first went to the Dr with aches and pains in PMR sites my Dr was convinced it was PMR but as my bloods werent raised a lot even after repeating the blood test twice in a week the senior Dr in the practice said they couldnt prescribe steroids without a Rheumatologists say so The NHS wait was then 3 months and I was in such pain barely able to get out of bed that wasnt an option The Rheumatologist examined me checked my history then said he needed to do blood tests to rule out all other things I asked how much these would be ( a friend had told me the NHS will still do them even though you have been to a Consultant privately !! ) Just as well as it was £340 !!17 tests I believe ! He was a bit huffy when I said I would get my Dr to authorise them which she did and everything was sorted out in less than a week and PMR was confirmed and steroids started

I dont know how the Scottish NHS works I personally dont see my designated DR in the practice but the first time I saw my present one she was great and always has so much time for you ( always runs late !!) She went on Maternity leave near the end of my first bout of PMR and I was most disappointed to have to see someone else

Your husband might not have PMR so further tests seem necessary but he should be at the Surgery door if the pain returns after the steroids wear off and refuse to be dismissed If he wants to work he should be helped to do so

Best wishes Mrs G

Hi Margaretann,

When I read the second paragraph of Mrs G's post I thought I'd written it myself! Almost identical experience. The only thing I can add that may or may not be of any help is: When I saw the Consultant privately she put me on 15mgs Prednisolone immediately as I was about to go on a cruise the next day and would have had to cancel it. When I got back she still wanted to make absolutely sure it was PMR (she was pretty convinced as the steroids had an almost instant effect, although I would say I still had about 20/25% pain and stiffness for a while). She asked me to stop taking the Prednisolone for 7 days and then have more blood tests. By day five I was in agony with pain and stiffness etc but now even worse - I rang her in despair and she told me to start back on the steroids immediately as she then had no doubt it was PMR. Has Jim's pain and stiffness returned? I'm so sorry your GP seems so dismissive, makes me realize how lucky I've been with my Doctor. Take care.

Lizzie Ellen

Hi everyone its the pest again [Margaretann], thanks for all your help and advice i will let you know how i get on. Jim took his last steriod yesterday [tuesday] no sudden difference up till now but i was told from another friend that because he has had a course of steriods they might have put it at bay for a short time,before it starts again, just have to wait and see so i will say bye for now and i will keep you posted

[ god bless all off you ] MARGARETANN

I was fine for about 4 days when I came off of them. Fingers crossed for Jim.

Lizzie Ellen