A whole new journey

Pauline - I'm so sorry, that's a diagnosis I wouldn't wish on anyone. :hug:

A proportion of PMR cases do go on to be dx'd as RA - it's not clear whether it was a mis-dx in the first place or whether the PMR morphs in some way and some experts do think there might be a connection. But like PMR, RA can also go into remission so it's not time to give up hope yet! I wonder if this is why we're seeing docs wanting to use MTX in anyone not able to reduce the steroids altogether - are they wanting to change the dx to RA without saying so? I'd understood from some of the reading I've done that RA starting at our age is less aggressive than JORA and joint damage is seen much less often - but I haven't read that much so I won't say hand on heart.

Has he also already done x-rays (to look for joint damage) as well as bloods (rheumatoid factor, though you can have seronegative RA)? There are a lot of different drugs for RA so if the MTX doesn't do it there are plenty of others to be tried, combined and whatever - it is, after all, a big enough market for research and big pharma to be interested. There is an excellent site which I have mentioned some time back called rawarrior written by a young woman called Kelly with RA who has done a massive amount of research into her disease and its treatment - it must be pretty much a full time job for her! Google it to get a link - well worth a read. Big source of info about the drugs, including MTX.

But you're not going to go away and leave us are you? :wink: Whatever the dx we'd miss our Irish connection :D

big virtual hugs again,

Eileen

Pauline

I'm so sorry to read your post and can well understand why you are feeling sorry for yourself following your rheumy appointment this morning. To get so far along the treatment route for a diagnosis of PMR and then have that changed to a diagnosis of Rheumatoid Arthritis must be quite soul destroying. :shock:

Do the \"base-line\" blood test results you are awaiting include the rheumatoid factor ones - if so, at least this should provide some sort of confirmation although I would have thought these would have been done automatically to rule out RA before your PMR diagnosis. Having said this, however, apparently PMR can morph into RA at any stage.

During my first undiagnosed year, I had very swollen knees and ankles and although the swelling eventually reduced, I continued to have very uncomfortable knees throughout the last few years which refused to bend ......until very recently (definitely so around your current dose of 9mgs) and I tended to put this down to having spent so many months in bed during that initial year. Towards the end of that year I had a private appointment with a rheumatologist who ruled out RA through blood tests and wrote to my GP saying that it was his opinion that in the absence of RA I was suffering from PMR - should have stuck with him!

If this does, in fact, turn out to be RA, Pauline, then thank goodness that at least you have got the right diagnosis finally so that you can get the right treatment to protect your joints.

As far as Methotrexate is concerned, I'm sure Nefret (Catie) will be along to reassure you on this following her experience with it. There is also a personal story of someone else's experience of MTX on the North East Support website under \"Our Stories\".

Chin up, Pauline - you got thus far with PMR and you will do so again if it is RA and you must still keep in touch with us.

Lots of love and hugs from MrsOxx :hug: :love:

Sorry Pauline if I've repeated a few things that Eileen has also :wink: said - she beat me to it!!

Pauline, I can't add anything to what has been said by Mrs E and Mrs O but only add a lot of sympathy.

You must feel as if you're starting along another long hard road. Do hope something works out for you soon but do keep in touch and let us know how things go for you.

With love, Green Granny aka Pam

Hi everyone,

Thanks for all your prompt replies and support.

I know that my rheumatic factor was checked and OK during my time in hospital before the PMR was diagnosed, but the rheumy did say that sometimes people who start out with PMR can develope R.A, so will be getting it checked with other blood tests :roll:.....I'll soon be running out of decent veins for them to stick :cry: .

My darling eldest son has started suggesting hat styles for if the metho makes my hair go thin :roll: ......sensitive as a two ton truck !!.

I am more worried about possible nausea, as I don't have a good appetite at the best of times.

On the up side.....while an unwelcome diagnosis, this is not life-threatening. Have just had news of another friend diagnosed with cancer in her breast and she is terrified at the thought of what her future holds :cry: .

Why is it that these things happen to nice , good people and the rotten members of society just get more rotten :?:

Love to all, pauline.

Hi Pauline

Sorry to hear your news You had done all your research on PMR and got that sorted and to start all over again is daunting

I know RA treatment has moved on a lot and there are new treatments and drugs on the market We have one friend with RA but he has had it for so long before all the new drugs came out

I really hope you get a definate diagnosis soon and the steroid injection makes you feel better

Mrs G

Pauline - a comfort for you about your friend (I hope): if she is our age and therefore post-menopausal the longterm outlook is pretty good these days. My MIL died at nearly 84 after having BC in her 60s - and she has been dead 17 years. It isn't a pleasant experience being dx'd and then the treatment but the treatments are improving every year. Do tell us how she gets on, won't you.

I found an interesting paper this afternoon from a group in Leeds about distinguishing between PMR and RA - so I hope your rheumy does ALL the identifiers and not just rheumatoid factor, but I'm sure he will! It's far too jargon-ey to talk about here though!

xx Eileen

Pauline have nothing to add as not as experienced as others.....just want to say you have my support and hugs....... here with everyone else for you.... stay with us regardless and wish you all the best on the next journey you are about to undertake...... :D Take care.......hugs...

Dear Pauline,

What a rotten time you're having. A hug is all I can send :hug:

Love from Lizzie xxx

Pauline

I am curious, did he test the fluid and tell you what it was?

I only ask because as some of you know, I had enormous swelling of my knee and could not walk at all.

Remember I am GCA only and not PMR.

I visited my Rheumy and he drew off the fluid, asked if I wanted a kenelogue injection and I said no. I would struggle on, till he had it analysed. Turned out it was pseudo-gout, caused by calcium crystals.

When you are on steroids, you leach calcium and sometimes the body does not clear it. Hence pseudo-gout and asI have also Calcium Grit in the Gall Bladder (Found during a scan because of a kidney infection).

Both the Gall Bladder specialist and Rheumy said just keep an eye on it. Give us a ring, when you run into trouble with either. So far eighteen months later and no problems yet.

Not everybody gets either the crystals or gout. But its worth thinking about.

I do so hope you get a proper diagsnosis and if you have to go on Metho, you will be given Folic Acid and I don't know anybody who has lost their hair on Metho.So you do not need to but Princess Bea's fascinator which is on offer on EBay just yet.

Please keep in touch.

Pauline, I can't add very much to what the others have said except to tell you about two of my neighbours, one of whom was diagnosed wih RA more than ten years ago, the other just a couple of months.

The condition does seem to be very well managed here. There seems to be an instant access system for those needing urgent advice, help etc. and the RA clinic keeps appointment slots free for emergencies so almost no waiting. Also I am told that the RA nurses are wonderful. When a GP wanted to prescribe a different ( cheaper ? ) version of one of my neighbour's drugs and which she was reluctant to accept, the nurse 'phoned the surgery immediately and tore off the necessary strip. Do hope you are lucky with your professionals, too.

The newly diagnosed friend is still a bit up and down and having her drugs adjusted fairly frequently but the two of them are there for each other.

Don't leave us, will you. Love Betty

Hi Mrs K and all,

My rheumy has sent a specimen of the fluid he drew off the knee to the lab, but said he knew from looking at it that it was what he would typically see in Rheumatoid patients....and having seen it myself it did look familiar :roll: .

I could not sleep properly at all last night...possible because of the extra steroid & so much going on in my head :cry:.

I did have a moment of enlightenment in the wee small hours though, and I now wonder if it has some bearing :idea:.

Many years ago, when I was training as a nurse, I had to have my tonsils removed as I was getting one infection after another. About two weeks after my op I had to be rushed back in as I woke up with a raging temp and unable to even stand up unaided. The consultant at the time said that I had scarlet fever with \"flitting Polyarthritis\", but Matron felt that it was a lot more like Rheumatic fever as all my joints were involved and I could literally do nothing for myself. I ended up off work for about 8 weeks while I recovered and I am now pondering whether something has been lying dormant in my system all this time :?:

Certainly something I will be asking my doctor about, as I had forgotten all about it until last night :roll:

On a happy note, my knee is far less painful today so at least \\i can get about without limping :wink:

Love to all, Pauline.

Hi Pauline

I'm not surprised you had a sleepless night after your news yesterday but I do hope you've managed to catch up with some sleep today.

I was also questioned as to whether I'd had rheumatic fever when a heart murmer was discovered about 10 years ago (at that time viral meningitis was diagnosed) and an Echocardiagram then found the reason to be a leaky mitral valve in the heart. I'd had so many illnesses as a youngster which were never diagnosed until the kidney problem was finally discovered and removed in my teens but any one of those illnesses could have been undiagnosed rheumatic fever - I had previously suffered with throat infections which led to my tonsils being removed and apparently strep throat is the cause of rheumatic fever.

The problem is that there seem to be so many auto immune diseases with no known or proven cause and no cure and sometimes no positive test which leads to so many wrong diagnoses. For instance several years ago on the Pat.Exp site a man wrote about his wife's endless suffering with pain which was had been put down to PMR amongst other illnesses but even with treatment she wasn't getting better. He happened to mention she seemed to get ill sometime after an exotic holiday - something rang bells in my head.....I had read about someone who had been treated for the symptoms that we know as PMR but after a course of antibiotics for some other condition her pains amazingly disappeared - her illness had, in fact, been Lymes disease. I relayed this to the man with the query......he had to plead with his GP for a blood test for Lymes disease......it came back positive, his wife was treated accordingly and recovered.

At least your rheumy seems to be thoroughly investigating now and I'm so glad that at least the knee injection has relieved that pain.

You must also feel some relief at hearing that MTC doesn't lead to hair thinning although I did laugh at MrsK's suggestion of buying Princess Bea's fascinator off e-Bay! :lol:

Thinking of you Pauline and sending you lots of good wishes.

MrsOxxx

Oh dear - typing error - \"MTC\" should of course read \"MTX\".

Hi Pauline, I tried to reply to you yesterday but it disappeared into cyberspace. I have a new computer, so it could well have been me hitting the wrong button!

I've been on MTX for more than 2 years now and have had minimal problems........it did take a while to get used to it and to begin with I found the fatigue a problem; generally speaking most patients are started on a low dose which is gradually increased, I started on 10mg, and the fatigue had more or less disappeared by the time I reached the maximum dose of 25mg.

Last summer, more than a year down the line, I did have a problem with mouth ulcers and a sore tongue. Rheumy told me to lower the dose to 20mg and increase the folic acid, and while it took a few weeks it did all sort itself out and I have happily bimbled along on that for the year. My hair is still as much of a bush as it ever was!

Bear in mind though, that for me the MTX is being used as a steroid-sparing agent and not as a first defence for RA. Not that that will change the side effects, but in your case it is being used to prevent or minimise the joint damage which can occur with RA by dealing with the inflammation, and the earlier you can start these DMARDS the better as there is less joint damage in the first place. (Disease Modifying Anti-Rheumatic Drugs). There are a number of them and you may well be given another one to take alongside the MTX or transferred to another if the MTX doesn't cut the mustard.

I do have an inflammatory arthritis along with the PMR and GCA and it was thought at one time that the PMR had morphed into RA, but nothing conclusive has emerged over the last three years so I think the MTX is doing double duty for me and has kept it at bay as well as helping me to reduce the steroids more quickly than would normally be the case.

If you've got any questions, do ask!

Nefret/Catie