So..there are people like me out there!!

No Rob - you are far from alone although, in fairness, you are unusual, being a bloke s well as being relatively young (increasing numbers of under 60s appearing with this though, I was 52 when it first appeared)! Lots more women than men out here with PMR! We are not allowed to give links on this site but there is an American arthritis forum with a PMR thread (google arthritis insight forum to look for links) and a few men. There is also a site run by the northeast pmr and gca support group (google that to find them) which will provide you with a load of info, all checked by medical professionals, about everything from symptoms, through dealing with the problems to the drugs used (steroids and methotrxate experiences included). There is also a link to a new associated forum. Beware though - there are a lot of ladies there who like a good laugh (well it helps with pmr :wink: )

Many of us have been active and working people all our lives until PMR or GCA hit us, many overnight like you, and we know all about the massive readjustment it requires. However - it maybe doesn't feel like it now, but in a year you will look back on now and realise how far you have come. Honestly! You won't be back to normal but you will have a life back - albeit with some limitations and accommodations. And if it is any consolation - men often react differently from women to both pmr and steroids and it is common for men to get better faster and with fewer side-effects. You've had your lecture about using steroids so I won't tell you off again! But don't take risks like that again or you'll have other problems :roll: !

It's a shame you spent all that private money - it gives me shivers to think about how much all that imaging cost! On the other hand - none of the rest of us have had things ruled out quite so efficiently! I love your ref to the neuro and rheum cons (that sort of artist were they? :lol: ). And, to date, there are no cures - so don't waste any more money on what promises a miracle. The miracle is (though you don't yet realise it) called steroids! They are nasty drugs - but they are NOT as bad as painted. Some people suffer badly with them, others don't. What they will do is give you some quality of life back until you can adapt. I still ski, work as a translator and travel all over Europe from my holiday base here in the north of Italy. And adaptation is what it is all about. Don't mourn what you can't do - celebrate what you can do.

There is a new support group (in its infancy, still neonate really) being formed for the southeast and there are other people active on the forums in the Hampshire area. So start with us - we all do our best to answer any questions and point you inthe right direction for help. But please don't ever again feel you are alone - and although we are not at the end of telephone, there are people around on the forums at some very strange hours of the night! Me - I stick to daylight hours personally!

However - PMR does sometimes \"go away\" and you get to stop the steroids so don't give up. It is also not uncommon for doctors not to have heard of it - at least judging by their reactions when you got to see them! Most of us would be in a \"state\" without steroids - and why don't big pharma do something? Because we have what is called an \"orphan\" disease and there is no way they'd make money out of us :roll: The UK support groups were started by five strong minded women who have this disgusting disease and discovered they were pretty much alone. It was launched as a charity over a year ago and the northeast group has made a dvd about pmr for information for you, your family and - we are now finding - many GPs who know next to nothing about how to treat their patients once it has been handed back to them. Some rheumys are pretty rubbish too. :wink:

And the forum linked to them I mentioned has a place for people to come and have a whinge when they feel really bad -

Hey... there's a bloke here!!

Hi Rob,

Welcome to the forum to which no one wishes to be a member. There's a lot of good information on this forum from a lot of good members here. Glad to see that Eileen has chimed in and welcomed you. Glad you're starting to feel better. As you already know the steroids (Prednisone or Prednisolone) only help with the symptoms and don't cure the disease. Thank goodness at least for [u:cc3697c803]that[/u:cc3697c803] treatment. When I first started with Pred, it was 20mg / day. After 2 days I felt quite a bit better. The following week I felt like 80% better. When I went back to my Rheumy for follow-up a couple of weeks later, I told him, \"They're pushing the wrong drugs on the street! This Pred is like a wonder drug!\" Yeah well, that's what they thought back in '50s when it first came out. They didn't know that there were lots of side effects (someone counted 82 possible). Thankfully we don't get them all. After being on Pred now for 15 months (now on 9mg), I think I suffer from about 5 of those [easy bruising, mood swings [i:cc3697c803](just ask my wife)[/i:cc3697c803], weight gain around the middle, and thinning skin].

I'm a bit surprised that they started you on 40 mg / day. The usual dosage is 15 or 20 to start. My ESR (sed rate) was pretty high at 85 with CRP of 6.5 I think it was. That's why my Rheumy started me on 20 rather than 15 mg. Starting a patient who they suspect has PMR on Pred is one way they use to confirm that the patient does in fact have PMR. If the patient starts feeling better in a few days, and much better in a week, it helps confirm their diagnosis of PMR. As you're already aware, we can't stop taking Pred without tapering slowly. After being on it for awhile, our adrenal glands shut down and stop making their normal level of cortisol... which is very important for our bodies to function properly.

The main website here has a lot of good information on PMR. I'm sure there will be others who will welcome you. They're all good bunch of people here willing to help answer our questions. Again, welcome to the forum.

Rob

Sorry to hear of your journey, but it happens to quite a few of us and as the 'baby boomer' generation hit their 60's just watch it grow.

Sadldy, there is no known cause or cure - so as EileenH says, do not waste your money.

However there are some things you can do to help yourself.

Visit www.pmr-gca-northeast.org.uk read the whole shebang and under Support Groups, there is an email support group run by John Ladlow for Men. Loads of Medical Information, link to an International Survey.

John has run this support group for sometime, as sometimes men have questions they won't ask of women.

Also a new support group starting up on the Soutch Coast.

There is also a new National Charity called PMR GCA UK (google that for the link).

There is also a DVD available.

I am not surprised they started you off on 40mg after all you had been through. Normal is 20-15mg, but needs must when the devil drives.

Learn to go with the flow, pmr has a mind of its own and you cannot win against.

Roll on research for cause, cure and friendlier medication.

Keep coming and asking the daft question, we have all asked them at one time or another and somebody always comes up with something that helps.

May your PMR take a long walk off a short pier and knowledge is power.

Hi Eileen, Mrs K, and Rick

How lovely of you all to reply. Thank you so much for taking the time to do that. You have certainly given me some great information about web sites to look at, and I will certainly do that. Thank you again.

It actually does help to know that others have got this atrocious disease also and that we are not alone... but having said that I so wish none of you had it, as this truly is something that you would not wish on your worst enemy!!

Luckily I dont have any enemies, or at least I dont think I have. I always try to be sensitive and nice to everyone. But obviously people see the part of me that I project outwardly, whereas inside I am devestated at the effect of the PMR and the consequences thereof. But hey, as of today, I will try to reclaim some of my old positivity, and look on the bright side of life. (even with the horrible side effects... hats off to steroids as without them at this point in time...I dread to think how I would be and feel.)

May you all, truly understand how wonderful it is for a new boy like me to stumble across a forum such as this, consisting of such lovely people who truly are willing to listen and advise. I salute you all. May your sleep be filled with the joy of birds singing, may your soul leap with soaring dolphins, and may your spirit be uplifted by angels.

Kind regards

Rob

Well hello there! A man!

I'm a long standing PRM/GCA patient and you are not too far away from us in West Sussex - look us up!

We are all very aware of the implications of this strange affliction and (in some cases) even stranger medication and we do like to help when and where we can. Most of us have a love/hate relationship with Pred so you are allowed to moan about the downside as well as celebrate the ups.

You will find there are quite a few of us out there and as MrsK has said there is a male support group available, too.

I wish you well on your journey.

Nefret (aka Catie)

Hi Nefret aka Catie

Wow what lovely names... makes Rob sound hyper boring!!

Thank you for your supportive words.... I learn more about PMR by the hour.. this forum is more knowledgeable than my rheum cons and GP put together!!! In case this is viewed by any solicitors acting on behalf of rheumatologists I was not of sound mind or body when I said that..it was the prednisolone talking!!

Thank you again for your reply.

Rob

Ah yes - we DO know more! But that is because we've had/got the dreaded disease! I said only in last week or so that what we really need is doctors who 1) have got PMR/GCA and/or 2) have been on steroids for a while and suffer when they are not on them!

One chump told a patient she would \"feel fine once she was on steroids, back to normal\" - in what world???? Yeah, right! If only it were so - but it ain't and that's the way it will stay for the foreseeable future I suspect.

Now then folks - we have another man, keep calm :roll: :wink: I think he should be encouraged to get involved with a support group - what say you?

Eileen

Hallo Rob and welcome.

You have already been given all the first essentials by Eileen and Mrs.K and been reassured you are not the only male on the planet with this affliction.

It does seem a bit crass to feel better because you are not alone in this boat but everyone on here has been reassured many times to hear that his/her weird reactions, responses and symptoms are not unique so just join in and share your worries, problems and celebrations as we all do. And have a good laugh, too, from time to time; the best medicine as we are often told.

Rob

You cannot have 'steroid brain fog' or 'treacle brain' already. That is the 83rd side effect, but its not listed as the others are - don't worry nobody gets them all. But most of us get sbf or tb - its either the pred or age or both.

We do know more, we are trying to educate them and they are trying to educate us.

But we have only ourselves, and they have multi disciplines and then this disease is not life threatening, just life changing.

The profile is being raised and will continue to be raised and the more we help 'educate' the more they listen.

Meantime I'll take the dolphins and the angels, but the birds - they are singing outside my window at 3.30am grrrrrrrrrrr.

Hi there Rob and a big welcome from me, too!

The contents of your post are sadly all too familiar to us seasoned PMR/GCA sufferers and, yes, we probably do know more than the medics as we've had to learn the hard way and by personal experience because it seems that so little research has been done in the past on these particular auto-immune diseases, plus very scant information seems to filter through to many GPs. The good news is that a lot of research is now being carried out by some Professors of Rheumatology together with some consultant rheumatologists and, very luckily for me, my rheumatologist is involved. He invited all his PMR/GCA patients to a presentation recently following which he invited the patients to record the various issues they had experienced with both the illness and the treatments. He also raised the merits of local support groups and as a consequence I have now set up a first meeting of a support group in Surrey to take place in a few weeks time. We also have the National Charity now which was launched last year. So although it may be a bit of a pipe dream to hope that a cure will come out of this research, it is to be hoped that at least more friendly treatment will emerge.

I am very surprised to hear that you have commenced on 40mgs for PMR alone - that high dose is normally reserved for sufferers of GCA. Having both conditions, I started on 40mgs in March 2007 and am now on half a mg a day. I had horrendously high inflammatory blood test markers before diagnosis of PMR (ESR 92 and CRP 157), then a year later at diagnosis of both PMR and GCA they were 46 and 65 respectively. Under the guidance of my rheumy I managed to gradually successfully reduce to 15mgs over a period of 6 weeks, with the rheumy saying that this was the dose that normally controlled the inflammation.

It isn't a good idea to push yourself too much with the exercise at this stage, Rob, as that will only aggravate the inflammation. If you are comfortable enough to walk then that is ample daily exercise during these very early days.

With regard to steroids causing increasing weight, it is a good idea to avoid too much sugar and too many carbohydrates such as white potatoes and bread as the carbs and steroids combined do seem to add to the weight gain. Increasing oily fish in the diet as well as other anti-inflammatory foods can also help.

I think I've said enough - I'm probably starting to talk rubbish anyway at this late hour and you're probably nodding off so I'll bid you goodnight and hope that tomorrow dawns brightly and comfortably for you.

MrsO

Hi Rob

I am not on this site as often as I was in the early days but I just had to reply to you because I live a couple of miles from Fareham in Portchester. Your story is all too familiar as you will see if you take time to look at the postings on this site (as I am sure you already have) and there are a lot of wonderful and knowledgeable people here who can give you plenty of advice and support. What I want to give you though is a positive message of hope for the future and to let you know that there is life after PMR so don't ever give up.

My PMR struck in September 2009, when I was a very fit and active 61 year old, and left me so miserable, depressed and tearful that I felt my life had ended. I couldn't even do the simple things in life like playing with my grandson and to walk 100 yds was an effort. Sleep was impossible and whilst I did manage to keep working throughout it was only with the understanding and support of my management. Before PMR I was super fit and could run 10 miles without effort but this condition reduced me overnight to a shadow of my former self.

A separate issue in my case was my GP who didn't agree with my consultant's diagnosis of PMR in the early days (she does now) and took me off the steroids after a few weeks. The upshot, to cut a long story short, is that I then didn't want to take them so I just lived with the pain and took high doses of Ibuprofen instead but these did little more than take the edge off.

So where am I today, I hear you ask! Well, it is like a miracle has happened over the past few months and I am close to normal again. Something changed in the early part of this year when the constant pain in my muscles seemed to alter but I can't explain what the difference was. I tried on several occasions to stop taking the IB but always gave in after 2 or 3 days until Easter when I managed to stop completely. I am now drug free, back running, enjoying my bowling (Treasurer of Fareham Bowls Club) and full of energy with few limitations. I still have some stiffness in my legs and can't see me running marathons any time soon but other than that life is normal and great :D

You mention in your post exercise which is something I believe strongly in. It is not easy with the stiffness of PMR but so important to keep as active as possible and may have helped my recovery. I find bowls a particularly good exercise for working the muscles without overstressing them and always felt much better after a match.

Hope it helps.

Best regards

Bob

Thanks Bob for the \"male input\" and delighted to hear you are doing so well. Obviously a case where the underlying autoimmune disease has gone into remission - and hopefully burnt itself out completely and permanently. :lol: Hooray!

Just a small caution about exercise for Rob - yes, exercise is very important because the main problem is that the blood supply to the muscles is compromised and that is part of the cause of the pain. Another cause of the pain is the fluid present because of the inflammation causing pressure. It is the reason for being so very stiff first thing in the morning and for the stiffening up after sitting for a short time. As the day goes on it becomes a spiral upwards as getting moving improves blood flow, the stiffness improves and you can move more. So, being able to get the circulation going by gentle exercise is a good thing.

However - the key is to find the balance. There are people who have tried to exercise their way out of their PMR and only made themselves worse. The fatigue is an integral part of PMR for many people and if you overdo it one day, the next few days can be bad and depressing. The more you do, the more you will be able to do provided you don't overtire yourself. If you have a problem with claudication (muscle pain that starts when you use the muscle and goes away when you stop) then you can gently and gradually increase the amount of exercise by doing a bit beyond the point the pain seems too much each time - but trying to do too much will just give you sore muscles of the sort you get during high intensity exercise but it will take much longer for the muscle to recover afterwards because the blood flow just isn't as efficient. At the start of the ski season I can't do more than a short run but as the season goes on I can do longer and longer runs without having to rest on a lift and am able to ski every day rather than just alternate days or even less! The summer poses a bigger problem as walking is particularly uncomfortable and hills pose a decided barrier (downhill more than up).

BTW - if you ever go to a physiotherapist make sure they know you have PMR - it is especially important that gentle procedures are used - MrsO will add to the info on that!

Eileen

Welcome Rob, though I guess you wish you didnt have to join us, but hey hang in there.

The wonderful supportive people on this forum have helped me enormously, picking me up off the floor when just want to go to bed & cover my head & have a good cry.

Things will get better , I couldnt believe it either , thought my life was over, when would I me ME again?

But as time has gone on the drops in steroid have made a difference.

Keep your chin up.

Have a good moan when you want, we have all been there.

Good luck my friend.

Amycakes.

Not quite sure I understand the comment a few posts back that you aren't allowed to post links on this forum because you are, but we do approve them first.

Anyway there is quite a lot about PMR on the Patient UK main site, in particular 3 UK PMR-GCA support groups - https://patient.info/DisplayConcepts.asp?WordId=pmr&MaxResults=50&fromsearchbox=1

Patient Admin Team

Hilary - it was me said it. I and a few others have put in links including the pmr uk support site in the past (not recently) and they have been removed from our posts. I fully appreciate why you do it and the problems involved in moderating but it has sometimes been a few days before the post has reappeared and if you wanted to point someone somewhere quickly that was out the window. On one occasion a perfectly innocent post disappeared for 2 or 3 days just because they'd used a phrase with a symbol in it - wasn't even a web address and it led to some confusion as to why it had gone. I know some links can be put in if we are prepared to wait - I agree it was not entirely accurate to say we are not allowed, but I do know some perfectly respectable links have been removed in the past.

Eileen