A whole new journey

Posted , 8 users are following.

Hi all,

I had a review with my rheumy this morning....not a good one :cry: .

Truth be told, I haven't felt great for the last month and I DID limp in as my right knee has been sore for over a week :roll: , but I thought I could cope and at least I was down to 9mgs RIGHT,:? :wink: .

WRONG.....Esr was back up to 22 (4 in Feb) and CRP was 34 (had been 5).

He drew 30mls of fluid from my knee before giving me a steroid injection...I think I had been denying that it was swollen :shock: .

Anyway, the bottom line is that he thinks that PMR may be the wrong diagnosis and that I have \"Inlammatory / Rheumatoid \" arthritis.

He said my best chance of getting remission and not causing long term joint damage is the Methorexate, as the steroids at an acceptable dose simply will not work, so with a heavy heart, I accept that I will have to give it a shot. I have to get base-line blood test results before I start on it so will probably have my first dose sometime next week, then tests every 4 weeks to make sure all is well.

Click here to view image

This is a different challenge, and I know it is one many others have to live with, but I just feel like I am going backwards instead of forwards.

Sorry for moaning, but feeling very sorry myself right now :cry:

Hope everyone else is having a better day,

Love, Pauline

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  • Posted

    Pauline What a thing to happen to you all i can say is that I wish you a speedy recovery sending you a hug couldn't find a hug so sending a rose :rose:
  • Posted

    Hi Nefret,

    Many thanks for your reply. Can I just ask you how long you were on the methotexate before you were able to get significantly lower on the steroids? My rheumy is starting me on 10mgs mtx with 10 of pred for a month and then review.

    I think my main concerns with the mtx are extra fatigue, as I already suffer from that :cry: , and an even worse appetite than I already have....my family do meal checks on me as left to my own devices I probably would never bother with eating dinner :oops:

    My hubby and Mum are both up in arms at the idea of me now having a different diagnosis and feel I should seek a second opinion....but I honestly cannot see what anyone else could do that has not already been done. I have had every test under the sun already, and the original diagnosis of PMR was the best match for my symptoms at that time :roll:

    I must admit, my right knee is 100% better after having the fluid drained and the steroid injection....now if I could just have the same done for the other knee, both elbows and both shoulders, I'd be fit to run a marathon :lol:

    Good luck to \"Blue\" in the Eurovision tonight.....I met Simon at a child-line concert a few years ago and he is one fit young man 8) .....the fact that I am old enough to be his mother is not a fact I dwell on :oops: :lol: ....a girl can always dream :!:

    Our pair, \"Jedward\", are probably the most hyper pair to ever hit the stage from Ireland......but they seem to have generated quite a following :?

    Hope everyone has a good & pain free w/e.

    Love, Pauline.

  • Posted

    Pauline, I was able to get from 15mg to 2.5 in about 5 months. I am currently on 20mg following a GCA flare and hoping to be able to do the same thing again..........I will keep you posted!

    Nefret

  • Posted

    Sorry, should have said I had been on metho for about 6 months then, but I had had one setback in the form of a severe chest infection which didn't help in the early stages of taking it as I was pushed up to 30mg and the chest consultant didn't realise that I couldn't reduce as fast as someone without PMR/GCA and the whole thing did get rather stressful. Was also moving house at the time, so I think it took longer initially for the metho to get going, but once I passed that stage it really was a rather smooth run.

    Nefret

  • Posted

    Hi Nefret and all,

    Thanks for your input Nefret.

    I had my baseline bloods done with my GP this morning so should know in 2-3 days if I am clear to start on the MTX.

    I asked my GP about getting a second opinion as hubby & Mum were not happy that I now had a potentially different diagnosis and she is referring me to the rheumatology clinic at our local University Hospital.

    It will probably be a while before I get an appointment, but if I get on their list I will not have to pay to go privately anymore, which will be a relief to the family budget :wink: , especially as RA and the MTX treatment will mean regualr checks for years to come :roll: .

    Does anyone else ever feel they could throttle their friends??? I had a day out yesterday with 8 girlfriends. One asked me how things were impacting, and I explained how frustrating I found not being able to do my garden etc. This one girl/ woman, said.....but you have 2 big strong sons who can do it for you :idea: .

    YES :evil: .....I know fine well I have 2 sons who can do it.......THAT is not the point....I want to be able to do it myself :cry: .

    Eldest son did a reasonable job on it today.....but its just not the same as having the satisfaction of doing it yourself :wink. He left a load of daisies un-mown \"Because they looked pretty\" :roll: :lol:

    Click here to view image

    Her Majesty looking very smart on her visit to our shores !!

    Hope everyone is doing well,

    Love, Pauline

  • Posted

    Hello Pauline

    That's good news you are to have a second opinion, and even better news that you wont have to pay for your treatment in future! :D

    It's hopeless trying to get across both the physical and psychological problems of PMR to others - your 'friend' would only know how you felt if she ever contracted PMR herself - not that I wish that on her or anyone!

    I love the fact that your son didn't mow the daisies \"because they looked pretty\" - tell him he could have made you a daisy chain! :lol:

    Bestest of luck, Pauline.

    MrsOxx

  • Posted

    Hello Pauline

    Hope you dont have to wait too long for your appointment All these illnesses seem to be marathons not sprints so if you can get into your public health system the sooner the better

    Great to have some help but totally agree its not the same Luckily now I only have to leave the heavy jobs to my husband He was hopeless at weeding !! Fine with hedge cutting and lawn mowing and great with a weed sprayer !! but thats it

    Yes really hoping the Queens visit goes well You have a great country and we always had a warm welcome wherever we went Its a shame you are so expensive for us now !! But that is of course down to the rotten value of the pound to the Euro now as well as rising prices in Ireland

    Have a good day

    Mrs G

  • Posted

    Love the daisy story. My BIL was very proud of his first lawn until his small son asked why didn't they have pretty white flowers in theirs like the ones in his friend's garden. :roll:

    Hope this will be a confidence booster Pauline. My newly RA diagnosed neighbour is off to Edinburgh this weekend for the Marathon! No, not to run, but to enjoy the trip and back up husband and friends who are.

    Hope your apointments go smoothly and you can begin to feel you are on the road forward.

  • Posted

    I'd have left the daisies too :lol:

    Glad you're enjoying \"One\" being there - and how are the Portugese fans???? Weather looks a bit yuk and windy! Apaprently Phil looked very longingly at the Guiness he was offered but didn't drink it - on duty I suppose!

    Friends (so-called) - if only they could walk a mile in our shoes, nothing permanent...

    Eileen

  • Posted

    It's known well enough that PMR can morph into RA and MTX is the first DMARD they would try you with in most cases. If you are already on it, you're one leap ahead of the game.

    You do need to remember that, like steroids, it isn't a painkiller. It clamps down on any inflammation and in that way helps to prevent the joint damage which can be caused by any inflammatory arthritis and which in the long run is far more of a problem than the arthritis itself.

    Most of us must have seen people with grossly deformed hands and feet due to arthritis. It is very life-challenging!

    Best of luck with the appointments, please do let us know how you get on - and if, like me, they still say you have both PMR and arthritis, don't let it faze you - I'm collecting medical conditions!

    Nefret

  • Posted

    Nefret - you and me both.....we're just greedy! :wink: :lol:

    MrsOxx

  • Posted

    Well I have menieres syndrome, underactive thyroid, PMR, Baker's cysts and a broken wrist-----do I win with all that?------ :lol: :lol: :lol:
  • Posted

    OMG :roll: :roll: :roll:

    YOU win hands down nefret :shock: :shock: :shock: :shock:

    Would not wish any of that on you....... :cry: :cry:

    Bad enough with PMR/GCA without anything else! :? :?

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