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  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -1, 00:00
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    hello,thanks again for all you msgs,hope everyone is well and having a good day :)

    all these bloods with RF positive and negative is confusing but from what ive read RF is antibodies in the blood and if its high (over 20 i think) then you got the antibodies but 10% of people have a positive reading but never develop rheumatoid arthritis even tho people who have a normal RF can still have it, no wonder it can take so long to diagnose, people with PA usually have a normal RF, I think ive got that right but hopefully someone will put me straight if i havent, ive been doing a lot of reading the last few days on it.

    had to give in and sit down at work today, im a dispenser in a pharmacy so not that easy to do but my feet are soooooo painful 2day :( and just couldnt take it anymore,apart from getting good shoes is there anything else i can do to ease the pain and burning in them?

    sorry to keep asking questions, but was wondering if it can take months to get a diagnosis and why does it take so long? also ive heard a lot about methatrexate and the side effects from it,does everyone suffer at the start and then adjust to them or is it trial and error until you find one that suits you?

    also one more thing lol, is tiredness usual in arthritis cos im ready for bed by 7pm everynight even tho i dont go then but have been really tired,always thought it was just having a underactive thyroid or cos of the pain draining me but its a different tiredness then ive ever had before if that makes sense

    anyway best stop yapping this will be a book :) tc all and speak soon i hope, lucy x x
  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -1, 00:00
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    was meant to say why does it take so long for a diagnosis apart from the blood tests being positive or negative? lucy x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    OK, I'll have a bash at answering you - hope I cover everything!

    Diagnosis isn't a straightforward matter: there are many forms of arthritis, not all are named as such, and some are present even without a positive blood test. Not all are diagnosed by blood tests, in other words. Another complication is that two people can have the same form of arthritis but it will present in a totally different way in each person.

    RA and PA are treated with the same meds, as both are inflammatory conditions. My regular blood tests check my CRP and ESR markers, which gauge inflammation levels in my body. They used to fluctuate quite a bit when I was just on meth, but since the introduction of the humira they have stayed in single digits. My joints still swell tho, from time to time, and the pain has never gone.

    My screen is jumping: I'll post this, adjust settings and come back with part 2. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Right. Methotrexate is a nasty med. It can be very effective for some, of some use for others and do sweet nothing for the rest. I am in the last category - my doc wants me on it, so I take it. It has never affected my PA in any way, and rarely affects me. I am feeling queasy today, which I presume is due to yesterday's meth, but that is only the second time I have had a problem. The side effects are not guaranteed - people do go on about them because many are affected, but if it helps your arthritis then surely the price is worth paying. Again everyone varies so widely: some have mild nausea, some have major, (and can take an anti-emetic) for some it stays, for others their body adjusts, some cannot tolerate it at all, for some they start to lose their hair, no two people are the same. The only way to find out if it will affect you (and the arthritis) is to try it.

    Tiredness? I've just woken up after two hours kip. I think we're all tired, all the time. Arthritis saps your energy whether it is active or not. You have to learn to adjust your habits and efforts, and be willing to pay the price of a busy day or a good night out by resting a great deal after. I cannot change our bedding in one fell swoop: strip the duvet cover, have a little sit down (HALSD) then do the pillows and sheets, HALSD, dig out the clean stuff and do the sheet and pillows, HALSD, then wrestle the duvet back into a clean cover and have a BIG sit down 'cos my feet, ankles and knees are killling me. A job that used to be done in five minutes now takes anything up to an hour. Longer, if I am in a temper with the whole malarkey of living. Tired? You bet! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • jenniet
    jenniet Member Posts: 27
    edited 30. Nov -1, 00:00
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    Just about everything has been mentioned I think, apart from an anti-ccp test. When I first saw the rheumatologist they said it was probably PA even though my RF was 192, but gave me xrays and a test called an anti-ccp test ( this I believe gives a much better idea of whether you have RA or not) and some sulphasalazine to take. When I went back 6 weeks later they said that the xrays and bloodtests showed that it was definitely multiple joint seropositive and anti-ccp positive RA and they added methotrexate to the sulphasalazine and put me up on a drip for some steroids to be administered. This was 2 years ago and I feel so much better now, ok I get the occasional off day, but try and be positive because things can and do get better. I've just been on a 10 mile bike ride after being at work - I could never have done that 2 years ago, just getting out of a chair took a lot of effort!

    Jenny
  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -1, 00:00
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    hi hope everyone is having a good day so far, was so looking forward to having a lie in this morning but no such luck,everywhere hurts even my ankles now :( but am wondering if its the way i have to walk thats creating all these new pains,i feel such a winge bag tho and just say im ok if anyone asks cos its easier

    i have had a CRP and ESP (i think i got that right) but the dr didnt say what the results of those were, he only said the RF was positive, can you still have RA or PA and have normal results for those two? its all so confusing lol, he also said there is no infections whatever that means :?

    anyway take care all and hope to chat soon,lucy x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    It is a muddling world, it takes tiome to get used to it. I don't have any RF factor (I feel cheated somehow) but my CRP and ESR (measures of inflammation) used to be quite high: the humira has reduced them to single figures for over a year. That is a good thing, I realise that, but the pain has not diminished in anyway, and I still flare. (I feel cheated somehow.) My ankles were hellish last night, knees and sacro iliac joints too, so sleep didn't happen much. (I feel cheated somehow.) Grrrrrrrr. You get used to it, this is what arthritis does. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -1, 00:00
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    hi DD thanks for replying, your right it just seems to have a mind of it own,i makes me think it must wonder around our bodies during the night and think ah i will settle here ready to wake her in the morning lol,i know its not funny but think im adjusting to the constant pain now,its amazed me how ive done that lol

    i hope your feeling a bit better today and not in so much pain, do you have to inject the humira? are the side effects less on that then the mtx? I read you can stay RF negative and then suddenly be positve or stay negative all the time but im not really sure what the other 2 are but am taking it mine must of been ok cos he didnt mention them :? but no doubt it will all be tested again when i go see the rheumatologist,how long do flares last or does it depend on different people,can you get a constant flare that never goes? sorry about all the questions again :roll: tc,lucy x
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
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    Hi Lucy :D

    just popped in to say welcome . this is a great forum to be on with lots of helpful peeps and loads of information.:wink:

    I have PA and have been back and fore to rheummys for the past 15yrs or so.

    I'm sorry you have such a lot of pain to deal with and I hope your rheummys will find the right balance of meds to dampen down arther and restrict his 'movements'!

    nice to meet you!

    Iris xx
  • coco67
    coco67 Member Posts: 2,374
    edited 30. Nov -1, 00:00
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    welcome and i hope your a bit better today xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Right, am equipped with coffee and biccies to answer all your questions!

    Yes, I inject the humira every two weeks. It's OK, I wouldn't rate it as a lovely past-time but it has to be done. I have weeekly methotrexate injections which have to be done at the hospital as mine doesn't allow people to do their own. They just like being a nuisance. I don't think I have any side FX from the humira (I always assume that I WON'T get them, not that I WILL) and I have had two bouts of nausea from the meth, both this summer. I hope this means it will start doing something - up until now it has been an absolute waste of my time and their meds. I do have some side FX from sulphasalizine (tinnitus) and naproxen (oral thrush). Gorgeous.

    Test results do fluctuate, the situation can change dramatically in a short space of time - usually for the worst, rarely for the better. The longest 'flare' I have had to date is three months, but that wasn't a flare as such, it was 3 months with no meds at all after enbrel tried to induce liver failure. I now try to induce lliver failure with much beer and wine - much more fun! The biggest problem we face is that we are all different - we are different in our tolerances of pain, side FX, how arthritis affects us, how drugs affect us. You have to learn how you respond, and how your body responds to the whole malarkey. It's not easy, but you have us. We'll steer you thro. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -1, 00:00
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    thank you DD is so nice to speak to such friendly people and thank you everyone for your replies, how do i reply and see your msgs at the same time cos i forget them when i click on reply and dont want to ignore what people have said to me.

    it has been 9weeks today that i have been in pain constantly even tho my hips have been painful for over 3yrs now on and off (mostly on) i dont like the sound of MTX at all to be honest,we arent even allowed to touch it when we dispense it at work :? as for injecting i could do that i think...well i do cholestrol and diabetes tests daily at work but that is on other people so who knows lol

    i do worry sometimes incase im being a wimp and it doesnt really hurt that much but i think if pain wakes you up then it is real,maybe having a name to all this will help cos then i will know what im dealing with,its not knowing thats the worst i think but know i may have to wait a while for a diagnosis.

    will i get a choice of which medication i go on or is that entirely upto the rheumatologist,will they discuss it with me? i suppose its trial and error what works for one person might not work for another,sorry your meds arent helping you DD ,will you stay on MTX if it doesnt help you? lucy x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I don't think one can see a post whilst replying, I note things then reply.

    I have a number of theories about meth, none of which are valid, I suspect! It has a bad press as a med, and perhaps with some justification. It is used as a chemo drug, in much higher doses than we have, so it's a baddie from the word go for that reason. I guess it is effective in treating cancer but for us arthritics it isn't such a silver bullet. It does work very effectively for some, for others not so well and for the rest it does nothing. Side FX are not guaranteed, tho there are those who seem to think otherwise. Yes, I have been on injected meth for some time and it did bu**er all in controlling my arthritis: my highest recorded figures for CRP and ESR respectively were 104 and 79 respectively,(tho they have been far worse, I didn't get a meth book for ages) the best it ever managed was 41/44. I feel so much better without it, but my rheumatologist is insistant I take it. I feel much better on just humira and steroids. Not good, but I no longer care about what's good.

    My pain has never gone, oh apart from post-op. When awash with GA life is OK. Pain killers take off the edge, that's all. That's all they can ever do, really. Life has a background of pain, like white noise. I can ignore it or deaden it with co-codamol (I have stronger stuff to call on when necessary). Currently I'm ignoring it, as I want the benefit later today when I go out. If I take too many now I won't notice the difference.

    Your rheumatologist will discuss what meds to start you on with you. Tablet meth is usually the first port of call, as is sulphasalzine, leflunomide and an anti inflammatory such as naproxen. You won't get the big guns (anti TNFs) until all the traditional ones have been tried on you and a distinct lack of response noted. Well, that's how it works at my hospital! Ummm, I can;t think of anything else, but if you can, don't hesitate to ask. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lindalegs
    lindalegs Member Posts: 5,393
    edited 30. Nov -1, 00:00
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    lucy145 wrote:
    thank you DD is so nice to speak to such friendly people and thank you everyone for your replies, how do i reply and see your msgs at the same time cos i forget them when i click on reply and dont want to ignore what people have said to me.

    Hi Lucy,

    If you click onto 'Reply with Quote' at the bottom of a particular post (instead of going to Reply to Topic at the bottom of the page) you'll be able to see what the person has said as you type.

    Hope this helps.

    Luv Legs :D
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
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    Lucy, you can open more than one window at a time so you can still read the post on one window, and type the answer on the other. Just go up to the very top of the page beyond the address bar; beside the Arthritis Care Tab you'll see a plus sign just click on that and open up another AC tab..you can then switch between the two tabs. :mrgreen:

    to avoid always having the previous text in your answers go down to the very bottom of the post (or the top) you'll see 'Reply to Topic' click on that and it gives you a clean page for posting your answer without all the clutter of the previous one!

    Iris xxx
  • caprica
    caprica Member Posts: 195
    edited 30. Nov -1, 00:00
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    hi there,
    dignosis can take ages indeed! it took the hosiptal from the start of december till about april to start me on medication and decide what to put me on.

    don't worry though it'll probably take a lot less time for you, i was just a really tricky case because i am sero negative RA, and nothing showed on my xrays so they had to do ultrasounds and nothing showed on those, so it all took forever.

    you might have some choice in what meds to take, the consultant decided that i didnt need methotrexate at this point, so i got the choice between sulfasalazine and hydroxychloriquine.

    like others said, the hard thing is that there's no single answer to any question. it all depends - on the severity of your condition, of what hospital you're at and what your doctor's prefered treatment is.
    hope you get something sorted out soon!
  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -1, 00:00
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    hi thanks for replies, i didnt think of opening a new tab to reply lol duh i blame it on lack of sleep,i think i will have a nice cold glass of wine now to celebrate my stupidness :D but thanks again.

    i just googled the hospital and rheumatologist i have to see and he is a locum,i hope that doesnt make a difference,it said the old consultant is retiring after many years so maybe a new temporary one will be good,who knows,not feeling to bad at the moment except for my left foot but even managed to have a go on my sons bicycle lol

    i gonna have to get my head around being patient and maybe having to wait for a diagnosis even tho i want to know now i expect everyone was the same and just wanted to know what was causing all these pains etc

    thanks again for answering my many questions lol and hope you all have a lovely saturday evening,i might be on x factor tonight as they are in birmingham but in the audience not as a contestant (big sigh of relief you wouldnt want to hear my singing :P ) lucy x
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
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    Hi Lucy,

    Hope you are waving at the camera's :lol:
    Good luck with your appointment. Maybe a new broom etc.

    All you can do is wait for the results and reports. You will have the time to decide what you want to do then.

    Sometimes they will start you off on the mild meds and see how things go.

    Lv,Ix
  • dippydoodah
    dippydoodah Member Posts: 350
    edited 30. Nov -1, 00:00
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    Sorry Im late at saying hello :oops:
    Welcome to the forum from me too, as you're probably finding out you couldn't find a better place for help and support.

    Im still a newbie myself really so not much help but I just wanted to say hello from me too x
  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -1, 00:00
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    hi dippydoodah, love the name :) thank you for replying and to everyone else too,hope you are all having a good weekend,what arthritis have you got? hope you dont mind me asking.

    i do have once again another question, had a very painful left foot last night and put a hot water bottle on it which did nothing but make it obviously feel even hotter,was that the right thing to do? it seems the less i do the more pain i have,is this normal? i just wanted a nice quiet relaxing weekend but am now suffering for it,cant even walk properly today am waddling lol cos my hips are hurting again,i love my bed but am starting to hate it cos seem to always been in pain when m in it :( even tho it is a memory foam mattress,i will stop moaning now sorry everyone but feel a bit fed up today tc lucy x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    God knows what is normal here for us! I can't remember my last pain-free day and, to tell the truth, I don't want one. It will only come back so what is the point? You learn to deal with it, to take pain killers and carry on. It's all one can do. You will find out in due course whether you need heat or cold to ease aches and pains. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -1, 00:00
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    thanks DD your rite i will learn what is right for the pain, ibuprofen does seem to work for me with no effects, the dr gave me co-codamol but they make me fuzzy headed so dont like taking them,and i agree about the pain what is the point of it going when it just comes back again, ive had days when i think yay its going but then the next morning there is it again so it might as well stay,the one thing i do miss is being able to walk normally,i look at other people and think they are walking and bending their feet arent they lucky lol,i used to be a fast walker but ive almost forgotten what thats like already x x
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
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    Hi Lucy :D

    Some peeps find that cold compresses are better for inflammation.... or alternating between hot and cold basins of water. I have always found heat more soothing as I hate being cold!! Brrrrrr!!!
    but may be cold rather than hot would suit you better and be more effective? it's worth a try anyway.

    Iris xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I was in M&S earlier today. A woman was strolling down the stairs, texting, and went head over heels. Everyone rushed to help: I burst out laughing as I sailed up the escalator. Daft cow, serves her right. Don't watch others, there is no point in torturing yourself. It does cause the occasional wonder to me, how they all wander about, not feeling a thing but then I console myself with the thought that they will all get old, and may well have to start using a stick and stuff will hurt. It comes to most of us, but for some it comes too early. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lucy145
    lucy145 Member Posts: 90
    edited 30. Nov -1, 00:00
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    thanks dorcas im not keen on the cold either so havent tried anything cold yet ,maybe if it was 90 degrees outside i might lol,one good thing tho is that my feet are always warm now lol

    haha i would of laughed too DD it does serve her right for not looking where she is going but i must admit im a bit guilty of texting to,well i was before i had to look what im walking on to avoid bumps and stones that is :? and your right all these people that are walking around pain free will get old lol and i find at work the ones who are in a lot of pain never moan and are always friendly the seemingly healthy ones are always complaining and moaning about every little ailment,i just smile sweetly and hobble off to do there bidding :x lucy x
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