Negative anti-CCP, low positive RF =?

Mat48
Mat48 Member Posts: 1,161
edited 4. Oct 2011, 10:07 in Living with Arthritis archive
Hi All, I posted a while back about menopausal joint pain/ suspect RA/ possible Palindromic Rheumatism. I went to my GP yesterday about continuing moving around pain in joints that appears to be worsening despite very little visible swelling etc. He told me that the rheumatologist had written saying that my anti-CCP is negative which means that I'm less likely/ unlikely to have RA which can only be a good thing! He will see me for a second time in November and told my GP that he would definitely not be prescribing any DMARDs.

I'm assuming all this is very good news but is it likely that he will say that with these test results and few visible signs of swelling - plus the fact that I'm peri-menopausal - it's all down to hormone fluctuations and dismiss me from his list? Then I'm scared things will worsen and it'll be forever before I can get myself back on his list.

I don't know what the implications are of an anti-ccp being negative - is it conclusive that I don't have RA does anyone know, and can it change or is it like a blood type or would he re-test me in a year or so?

Silly me I should have asked my GP these questions but had so many other things to ask that I didn't think of it until afterwards. GP wants me to ask rheumy about the hormonal aspect and see what he and the gynae think about me going on HRT. I have no other menopausal traits to date - only roving joint pains, extreme at times and just aches at others as well as deep heat in and around affected areas.

He didn't take blood for inflammation this time (last time a few months ago they still slightly raised but were coming down) says he'll re-do them in a month or so along with hormone levels before I see the rheumy. He wanted me to take more NSAIDS and prescribed 3 Ibuprofen a day because he said that the locking pain I get at night is down to inflammation so I need to add this to my daily pain relief recipe! Grateful for people's take on this - if any?!
Mat
If you get lemons, make lemonade
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Comments

  • skezier
    skezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Mat,

    Its not that simple flower. You could still have a a streoe neg type and well don't give up yet cus he is unlikely to say its hormonal.... I have to say the horman's don't effect mine at all actually. I might be lucky but its the same no matter what part of the cycle i am on.

    Hang in there and perhaps make a appointment or even a phone appointment with your g and have it explained to you better would help?

    My bloods are neg for ra but I got pa and the inflammation things come up in red which is also constant and doesn't seem to change but I don't understand them I am afraid.... I do a half decent ostrich :wink:

    The NSAIDS might well help you and I still think a chat with your gp might be a good idea. Cris x
  • frogmorton
    frogmorton Member Posts: 26,769
    edited 30. Nov -1, 00:00
    Hi Mat

    The bloods can and do change - and many types of inflammatory arthritis are negative too

    They can be negative and then even years later become positive so they should re-test periodically.

    Be assertive and don't be 'forgotten' will you?

    Suggest you keep yourself a diary with symptoms in it so that evidence is still there if you need it. Some of us take photos of our swelling if it is intermittent so they can see it.

    Love and hugs

    Toni xx
    Love

    Toni xxx
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Thanks Cris. My GP and I made the connection with hormones because my symptoms all disapeared when I had a period for the first time in several years recently and then came rudely back within three weeks which seemed more than a coincidence. :idea: :cry: :sad:

    Sorry I know I'm always wanting answers where none can be given. I am taking the ibuprofen 3 times a day to see if it's making a difference and i do believe it is making a bit of a dent on my painful shoulder and wrist now. It sounds stupid but it never occured to me that the locking pain that was waking me in the night was due to inflammation so I was just taking either paracetamol or Ibuprofen whatever came to hand. I don't like being on these things 24/7 because they screw up my digestive system but needs must I guess. I would just like a name for this weird rotating form of arthritic pain but it seems it might be years before I get one. Although I was pleased that the anti-ccp was negative on some level I wanted affirmation that this pain was real and wasn't going to be just dismissed as all in my imagination one day soon by the medics :x

    Do you get Psoriasis with PA? It sounds idiotic to ask because of course you must do but but several people have suggested that what I've got could be PA because I have a history of skin problems (eczema). I don't think so because doctors haven't suggested it and the eczema has gone away over the last few years. This is why I put so much down to hormonal fluctuations and times of big change in the body. Mat x

    Ps oh I see Toni yours has just come through! Yes I try and keep photos but it's really not that clear in them to be honest. Maybe inflammation will show itself more over time but for now others in my family have said the images look fairly normal. I do keep a diary but the rheumy and GP are so busy and brisk that I can't see my bothering to print it off and show them. It's good to look back on though and I keep a food diary (when I remember) to see if there are links with symptoms and what I've eaten. I will try not to let them just dismiss or forget about me but it's hard without appearing a bit of a hypochondriac because I look well (having lost a lot of weight) and pain isn't really believable unless you are experiencing it first hand? Wouldn't it be grand to pass it to someone else - an apparently disbelieving doctor for example - and walk away smiling?! I think I'm quite paranoid about this because they probably do believe me. Thanks for explaining bloods Toni that really helps. I just thought anti-ccp might be one that stays the same because it's more specific.
    If you get lemons, make lemonade
  • nanasue
    nanasue Member Posts: 465
    edited 30. Nov -1, 00:00
    Hi Mat, I don't know if this will help, but for about 2 years before I was diagnosed I kept getting told all my pain was due to being peri-menopausal, it wasn't until I saw a different GP in practice (who has an interest in it) with swollen hands that I was tested and it came back as probable RA, confirmed 6 months later by rheumy. So hang in there and make sure they re-test if you get more pain or different symptoms, especially noticable swelling. I know it's hard but try to keep positive and we're always here to listen and advise if we can, good luck,

    Sue x
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Thanks Sue. I know it's so much harder for others who have terrible problems to contend with re RA, OA and all the others. I'm still pretty mobile mostly and really trying not to complain but we've just had a big run of bad luck and all this roving pain seems to feel like an extension of the bad luck!

    Thanks for telling me about your story in brief. Its a bit awkward because i live in a very small, close-knit island community and changing GPs would be almost impossible. I'm in a practice with 3 GPs, the nicest, most forward-thinking one of whom is part time and always in demand. The one I see is good too but he's not particularly sympathetic or a great listener like the other - so I tend to see him only when i really have something specific to ask. He's the one the rheumy writes to so it would seem pointed to start going to another GP in this practice for my joint related matters.

    The chap I see is quite focused when I'm there and does seem interested in arthritic conditions - to the extent that he's interested in any specific area of medicine I think. He's reasonably knowledgeable. If I go and see the great woman GP I feel I will offend him when he spots me in the waiting room! There is only one practice in our area so I'm quite limited in choice terms. There's no choice at all about rheumatologists - they are like gold dust and he comes up here every four months and am lucky to be on the list under his care so far. That's why I worry about being dismissed as having peri-menopausal arthritis that will vanish in a few years time presumably as my hormone levels settle? But I guess like you time will tell and it'll either go away (please!) or stay and get a name for itself eventually! I must learn to be PATIENT. I shall try writing this word out 100 times and that'll learn me as my late mum would have said! Mat x
    If you get lemons, make lemonade
  • skezier
    skezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Mat,

    Being patient is often the hardest part and it can take a while as well. I was lucky I was fairly obvious by the time I mentioned it so the rumo immediately knew it was the pa. Mine seems to be quite classic in what its doing.

    I never really had a lot of psoriasis, did have some but never before '87 when I had a blood transfusion.... thats made me thing cus I have also given a fair it of blood in my time... maybe totally connected any way :lol:

    Funny how we have the need to blame eh?! :wink:

    It does sound like you have a good gp and a good rumo and well the bloods being negative doesn't mean too much. Mine do have raised platelets, crp and es what ever but the pa is far from under control and also I have other conditions and the bloods could just as easily be showing them.
    my rumo goes on symptoms more than the blood results so hope fully so will yours.

    Keep the diary and take some pics through cus a lot of this is diagnosed by history as well.

    Leaving you a hope and a be patient draft... its doesn't quite work though :lol: Cris x
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Thanks Cris. Interesting re the blood transfusion and blame. I'm inclined to blame my hormones for everything. When I was pregnant with first son I was plastered in eczema - quite literally from head to toe from the first month of gestation through to delivery. This was entirely hormonal and didn't happen for subsequent pregnancies so I think my body just went into shock with this flood of new hormones surging through me. Then I guess it acclimatised for next two? I have suffered from chronic eczema and allopecia on and off since I was little but over past two years it's disappeared completely. So I do feel sure arrival of this arthritic condition is to do with hormonal changes - but that's not to say it isn't also the start of autoimmune disease either - just think that with me the two are linked somehow?

    I'm meant to be working flat out today so have told hands and brain to be patient - here's hoping they obey orders!
    Mat x
    If you get lemons, make lemonade
  • frogmorton
    frogmorton Member Posts: 26,769
    edited 30. Nov -1, 00:00
    nanasue wrote:
    Hi Mat, I don't know if this will help, but for about 2 years before I was diagnosed I kept getting told all my pain was due to being peri-menopausal, Sue x


    I thought (L read somewhere) the average age at onset was about 40-60 if that's the case then ...surely? we will ALL be peri-menopausal :roll:

    Love

    Tonix

    Mat persist lass you have to. We will be here to support you
    Love

    Toni xxx
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Thanks so much y'all! I will persist. Out last night at a dinner dance charity fund raiser here and I didn't dance, mostly sat and yet this morning I'm not only wiped out but both my wrists and my feet are agony? Sugar!

    My apprehension is really about the rheumy because he was so brisk, I hardly managed to explain myself and because there was nothing visible to show my brief history he seemed dismissive - although he did say something was obviously happening because of my bloods. I was still in the after glow of a steroid jab then so he thought perhaps the absence of visible swelling was down to that.

    But my swelling seems subtle - I feel slightly swollen when I'm in pain but it can't usually be seen with the naked eye and v. little redness. And yet the pain feels like fractures often - it's hellish as I know you will all understand.

    So what if I'm having a good day - as I often do? Normally it's much worse in evening and during night. If the anti-ccp test is negative, only a low positive for R.Factor and I once again have little to show for all this then will be hard to be persistent in the face of someone so curt. Oh dear I'm starting to fret all over again but sure you will see understand why. I almost feel as though I should inject something into joints or thump them against a wall just to make them look as dramatic as they feel! Perhaps he will listen more and be less brisk on this second visit. I do hope so but I fear leopards don't change their spots!
    If you get lemons, make lemonade
  • Ankyspond
    Ankyspond Member Posts: 626
    edited 30. Nov -1, 00:00
    Mat48 wrote:
    Silly me I should have asked my GP these questions but had so many other things to ask that I didn't think of it until afterward.
    Mat48 wrote:


    Silly me I should have asked my GP these questions but had so many other things to ask that I didn't think of it until afterwards. 

    Hi, don't despair in the beginning I was diagnosed with sero negative arthritis and over the last few years got a financial diagnosis. Arthritis is not a disease that is dealt with quickly but hang in there. It's so easy to forget questions as you said above so write them down before you go, as overs said take photos and keep a pain diary. I also created a pain map which works, I will be using it on Monday. I have put the link to it below, if you want a copy inbox me with an email address and will send it. Hope things get better soon. Xxx

    http://www.arthritiscare.org.uk/forums/living-with-arthritis-forum-f8/happy-to-share-body-pain-map-and-safe-emails-x-t26288.html
    AS Sufferer
    Live, love and enjoy life, live each day as though it's your last!
  • dorcas
    dorcas Member Posts: 3,538
    edited 30. Nov -1, 00:00
    Hi Matt :grin:

    I agree with the good advice you've already had from other peeps here.... there are many forms of arther some of which are negative for RF -rheumatoid Factor, and it can take quite along time to get a definitive diagnosis. :roll:
    ...... I don't know anything about the peri-menopausal theory :shock: but if you continue to have symptoms of arther then hang on in there and keep asking questions of your doc!

    Like Cris I too have PA (without the psoriasis) and it took a year to diagnose... mainly from the type of joint damage shown on xrays and raised ESR and CRP-inflammatory markers.

    hope you are having a good weekend. :wink:

    Iris xx
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Thanks for your support it really makes a difference and I'm so grateful. OH lovely but preoccupied by car probs,work and house probs so I don't like to add my health worries into the equation as well. Weather lovely and mild and been showing a visitor about who kindly turned a blind eye to my wrist supports and hobble - today's little joint pain manifestations!

    Blimey - the things I'm learning - that you can have PA without having Psoriasis for one? :idea: I'll keep reminding medics I exist, am not exaggerating or imagining all this pain. I asked my GP if he shouldn't take my ESR(very raised 8 months ago down to quite raised about 7 weeks ago) and CRP but he said not necessary more than every 6 months which is a little frustrating because I think it's probably back up again now but there we go can't argue with him he's the GP! Mat :eek:
    If you get lemons, make lemonade
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    I also created a pain map which works, I will be using it on Monday. I have put the link to it below, if you want a copy inbox me with an email address and will send it. Hope things get better soon. Xxx

    http://www.arthritiscare.org.uk/forums/living-with-arthritis-forum-f8/happy-to-share-body-pain-map-and-safe-emails-x-t26288.html
    [/quote]

    Sorry AS sufferer I would very much like to receive your pain map but can't seem to get your inbox to work for me - maybe my laptop or maybe me being a techno/ forum dunce - or both?! Cant email tonight because my hands and wrists are too painful to spend another moment on this thing. How can pain be this bad after taking all my pain meds by the book? Making me feel quite sick tonight. Probably just from me working too hard (as an embroidery artist with a forthcoming exhibition) but that wouldn't explain the side of feet and toes all throbbing as well. I can't afford to stop working anymore for this pain. Mat48 :cry:
    If you get lemons, make lemonade
  • Ankyspond
    Ankyspond Member Posts: 626
    edited 30. Nov -1, 00:00
    Mat48 wrote:
    Sorry AS sufferer I would very much like to receive your pain map but can't seem to get your inbox to work for me - maybe my laptop or maybe me being a techno/ forum dunce - or both?! :

    Well done you found it got your email, have sent it to you if you don't get it properly let me know. Hope it helps. Xxx
    AS Sufferer
    Live, love and enjoy life, live each day as though it's your last!
  • Stu69
    Stu69 Member Posts: 202
    edited 30. Nov -1, 00:00
    Hi Mat,

    I'm so sorry I never picked this up again on your original post - the forum moves quickly and I took a few days out too.

    To come back to something Cris said regarding dx without bloods. That was the same as me. Years of pillar to post with no real +bloods, despite seeing a haematologist regarding blood-borne disease, sent away with the dx of 'AI disease of type - unknown', they never made the connection and was back to my GP for more time in limbo-la-la-land.

    I only got to a rheumy by chance - I was at an ENT clinic for one reason or another and the excellent consultant sorted out a problem and simply said, 'is there anything else I can help with' to which I said, if you could tell me why my joints hurt so much I'd be grateful. He said, after looking at one that was inflamed that I should see his colleague, a rheumy. My GP was never involved at all - I got a letter about 2 weeks later with an appointment booked for a month after that. I took my pics and diary and duly attended. My rheumy did an exam, looked at the pics I'd taken, and listened to me rattle off my description of the attacks. He said within 5 minutes, Palindromic Rheumatism without a doubt. He said he'd do bloods, they did - came back negative, and do x-rays, again, no damage. That qualified his dx, as PR can be and is a mysterious thing indeed.

    I'm not suggesting it's definitely what you have - just that it is so similar to my own experiences that it would certainly need to be ruled out and for that, history (with diary and pics if poss) and examination can dx this.

    I only got started on DMARD treatment after the flares became so painful and so often (3 joints one day, 5 two days later, then 4 or even 6 at a time and then 2 or 3 again, with no let-up) that ibuprofen was doing nothing. I limped to an emergency consultation with the rheumy after breaking down in agony at my GP's. They did a steroid shot, took my bloods (same old negative results) but decided to put me on Sulfasalazine(sp?) as the attacks were continual but all with that curious Palindromic way of coming and going, with extreme pain, but no +bloods.

    The time on sulpha lasted 2+ years, and I had 3monthly blood tests and rheumy check-ups. On one of the last times my flares had returned, and my usually neg bloods came back with positive RF and high antiCCP and ESR! Finally, I thought, something to show for the bloody pain! At that point I was taken off the sulfa, put on methotrexate, given Arcoxia and better pain dullers and told I had RA instead!

    What I guess I'm saying is that this needs a good deal of luck but persistence is also key. It is hard to remember things to ask. I came away from so many appointments thinking 'bugger, forgot to mention....' etc.

    Eventually, it will pan out and pay off - you're in the system in one way or another, so make sure that they understand that your concerns are real and that even if they think it could be related to something else, that they eliminate those in the course of what is the early stages of dx and treatment for you. I guess basically, they are being thorough in looking at everything rather than specifics, which, what I'm trying to say is, is part of eventual diagnosis and something that unfortunate takes time.

    Again, soz for the tardiness in replying, but feel free to nudge me if you need any more help. I'm no Dr or rheumy, but like so many here, we can support you and know you're not going mad - you're just at the start of what can be a blooming frustrating process.

    Good luck,

    Stu :)
    No-one was injured in the making of this signature, however, quite a few electrons may have been inconvenienced.
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    So grateful to you again Stu for sharing your story. I did look at the PR site a lot and tried to register to no avail?! This seems to fit me to a tee but only doubt is that I experience very little visible inflammation and also that this thing affects my small joints much more than my larger ones and it says larger joints more commonly in PR?

    The main reason I get so stressed, impatience and pain aside, is because I'm an artist and my practice mostly is stitching/ embroidery which involves a lot of forceful tugging and fine needle work and it's becoming increasingly hard to get work done because my hands have become much clumsier and weaker over the past few months and my wrists.. I won't even go there! I blame the nature of my work causing such pain in the evenings - having been usually going full pelt at it during the daylight hours! E.g maybe it's just repetitive strain - or perhaps I overdid that exercise session earlier (joints other than hands) etc. The GP put me down for physio when I explained about weakening hands but I'm away soon for 3 weeks and no word about an appointment. Perhaps I'll get some exercises I can do to strengthen my fingers and wrists again.

    The pain is usually much worse at night, although any one pain will persist from waking all through the day - but ibuprofen seems to do the job in making this more bearable now. But by evening I feel I just can't cope and am usually holding out for pain relief that I can take at night.

    I have read that OA and RA are mostly worse in the morning - and mine was at the start too - but now it's definitely the other way round. So while I manage okay in the day time - even if dog walking or work is restricted by a bad wrist or knee, ankle or foot (today) I can usually struggle through without too much hardship. But by evening I'm often pretty much on the brink of despair. Of course this is when the surgery is closed too so they just have to take my word for it - and it just doesn't sound as credible when I'm describing it somehow?

    After reading your story I find myself hoping that I'll have a huge great flare while I'm away so that I am forced to getting a second opinion from someone who takes my symptoms, not just bloods, seriously. But I don't expect this to happen - it seems more like a gradual decline is more probable with years of moaning and groaning fruitlessly ahead. Main problem I have is living on an island off Scotland without the choices or range of expertise that exists in bigger, more populated places.

    But here I am waffling - back to work for me and many thanks to you all for advice and support.It makes the loneliness of this experience more bearable.

    By the way does anyone else find extreme pain intensifies like this during the evenings?
    Mat x
    If you get lemons, make lemonade
  • Stu69
    Stu69 Member Posts: 202
    edited 30. Nov -1, 00:00
    Hi Mat,

    We all understand the frustration. It's something I believe I mentioned before in other posts, but after years and years of not my knowing, finally getting some sort of dx helped me to take control. I broke down when I finally got told what it was - like my Gp could then say, OK, we believe you now, you know? You WILL be at that stage, sooner rather than later though, so fingers and everything x'd for you for a speedy dx and treatment!

    To take your last Q and a bit from the lengthier part of your reply together, this is how mine started and the disease progressed, maybe there are some similarities?

    My flares started in the smaller joints; my thumb used to be agony and sometimes both thumbs went together...deep joy of joys. My toes would get it too, some days, mostly the big toe (both sides) and smaller bones in my foot, under the arch. My fingers hurt at times but it would affect say, my middle and ring finger larger knuckles and middle knuckles, again on both hands, but never the last little knuckles, near the nails. Those flares spread and it was then, after a few years of that that I sought help, as I was getting immobilising bad flares in my wrists, where often my thumb would then get it a day or two later.

    When I got help, my knees (both, and internal and external sides of each joint) would flare which was bad enough, but my elbows then both started, followed by my shoulders, which, if I'm honest, is possibly some of the worst pain I have ever EVER experienced. I could not move them a millimetre without dissolving into tears of pain. Then the shoulders gave way to the wrists, or the elbow, or the knees, and then, one morning, bang - my jaw!!! That hurt too :lol:

    The only thing I have never had bad pain in is my hips, as every other joint has at one time or another, had a succession of flares, some much MUCH worse than others - nothing will stop the pain, at all. The steroid jabs never touched it.

    Regarding timing - mine were worse at night - pain on waking, yes, but that subsided during the course of trying (through very gritted teeth) to manipulate them during the day, but come evening, flare-fest! Through the night too of course. The only time I could not at least try to move them was as I mentioned, when my shoulders flared. Nothing would get me to try to move them - I actually vomited trying, it was that bad, and there have been so many times I couldn't wipe my bum (sorry!) or brush my teeth, when those bigger joints had me down. You know what though Mat? I fought the fricken thing hard - I've driven to work one-handed, steering with a knee and changing gears leaning over with my right arm, cos I will not be blighted by this nasty piece of work AI thingy that has a name, for sure, but one that's maybe a bit too much for a public forum. :lol:

    So, mine started small and turned me over well and truly when it progressed.

    If that sounds awful, I'm sorry - it's just my personal experience and I have to say that even talking about those old flares, it sends shivers down my spine, but that was some time ago - the meds have me almost flare free, so it can and is something that can be controlled. The hardest part is getting someone to tell you what the flaming heck is going on!

    Oh yes, nearly forgot - I was going to add that I think my flares were worse at evening/night because like you, I kept active in the day, so maybe why you are finding that they're worse then, and yes, unfortunately, it does take years to sort, as is the nature of this darned beast in how it progresses. The goal, if you like, is to slow, or at best, halt the progression, and that can be hit and miss by its very nature, which means a fair amount of hoop-jumping, unfortunately.

    Cheers,

    Stu.
    No-one was injured in the making of this signature, however, quite a few electrons may have been inconvenienced.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Pain may well seem worse at night as it is at the end of the day, a day when you have been active, engaged with tasks, your focus has been shifted away from matters but come the evening you are tired, the focus shifts to what is hurting, it's difficult to get away from the effect of the day.

    I have been living with fluctuating pain levels for fifteen years, I have not had a pain-free day in all that time and, quite frankly, I don't want to. I like to know where I am with it and the thought of it going, well, I find that scarey. Even over my brilliant week-end the pain was the same. I apologise Mat, I cannot remember the pain relief you use - could it be time for a meds review? Maybe there is something else out there that could help more? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Well DD and Stu- I am grateful for your stories although they are more than a tad sad and depressing. If it all goes away one day I'll be mindful and grateful beyond my widest dreams but I'm a realist and prefer to be reminded about sinister goings on beneath the skin also. I don't think mine has been as bad as yours Stu - or maybe my pain threshold is still to be tested but it's quite high after a lifetime of chronic eczema, 3 babies - 2 enormous and one got stuck! Plus gallstones that can double me up infrequently. I want to shout all this out to my relatively new GP when he says stuff like "you'll find that steroids will work and lessen the painif you have a proper flare I promise" when I've just explained that steroid jab made swelling and stiffness go but pain worsen a lot? Bloody hell does he think I'm coming to see him with just a few aches?!

    Yes I think I'm starting to see a pattern - the more I do in a day, no matter how fun or rewarding - the higher the price I pay later on or the following day. S'pose that makes sense really.

    Pain meds are Amitriptyline 10mg, Codeine 15mg, paracetamol 500mg all taken at about 9 or 10pm unless I'm out late and 3 x ibuprofen(400mg) a day. That feels like a lot to me but aware that there are stronger things out there but my GP hasn't offered them yet. I tried diclonfenac but had side effects. Little finger giving jip now - it's like a merry go round here - what with storm force winds and all. Only saw GP last week so can't go back for a while now or he'll think I've got a crush on him! He's like that-Gods gift to womankind and all that! (he's not my type though!). I know this only through a friend who he humiliated once. Would prefer the woman GP but she's always fully booked part time genius of a doc and I only decide when to go last mo when I can stand it no longer.

    Must dash BT engineer here to repair line, joiner here to repair walls, teen sons to ferry and a repaired car to collect from the garage. Seems everything else can be diagnosed and repaired but me!!
    Mat xx
    If you get lemons, make lemonade
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    We all find that the more we do the more we suffer, it's known as payback on here and it affects us all. The tiredness levels fluctuate according to the level of arthritis activity as well as life-activity. We all walk a difficult tightrope. Docs know that steroids work well, and they do, but they don't work in the same way for everyone, which is a fact they often overlook.

    I realised that my post was a little downing so came back to edit it, completely forgetting that that helpful facility was removed over the week-end by somebody technical. I have no idea why and I sincerely apologise for its tone. :oops: I had awful eczema too, my mum used to put me to bed wrapped up like a mummy in crepe banadages with my hands in mittens which she tied on. This was to stop myself scratching myself raw but I got wise to her and hid a jolly good hairbrush. Oh I remember the joy of feeling those bristles tackling an itch! Sheer heaven! :smile: And the pain of the skin splits. Red mouths of raw skin. :sad: I used to start every day by deliberately bending my fingers to break them in as it were, so they would not bleed too much at school. I also remember her telling me that the body undergoes a huge change every seven years and that at the age of fourteen I would stop the asthma and eczema. Yeah, right.

    I haven't had gallbladder trouble but someone who used to post did and she had hers removed much earlier this year. I believe this has helped her enormously - would they consider that for you?

    This must be very frustrating for you, having something that comes and goes so much so you never know where you are. That I can appreciate, the same with the trouble with your work (now that does sound fascinating, what do you embroider? Official robes or uniforms perhaps?) I too struggle on the work front as my stamina lessens and lessens - that is not gloomy, just a statement of fact. It can take a while for some to be diagnosed, and in the mean time it makes demands on them that many could not manage.

    Try to build as much rest time into your day as you can as that may help reduce the evening payback. Are your children and those around you able to help more with the household chores etc? That could ease some pressure too. We have to find ways to adapt, we have to change the way we do things, that is one of the best ways to help ourselves with this malarkey. It is also one of the most frustrating and irksome aspects.

    As for the meds, I have never been offered amytryp and intend to carry on that way. I can get by on cocos at the 30/500 strength, and I save the trammies for the really rough days. One of the biggest problems I think we all face is sometimes expecting too much of the meds. I am currently enjoying taking one that is actually getting rid of a problem. It's refreshing. As a result of that I am off the PA meds and feeling better in myself too (which is also refreshing). And on that mildly positive note, I'm off. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Will let you get off DD but please could you tell me what cocos and trammies are first? And also hubby saying as I popped latest ibuprofen that old folks in care home take paracetamol but none on anti inflams 24/7? Should I be - GP prescribed them three a day but it feels wrong somehow? Mat x

    Ps oh for an edit I've worked out that cocos = cocodimol and trammies = anti-inflams? Rhyming slang for med matters takes a while for us novices but luckily I started out a cockney before moving far far North to the land where the wind never rests! Got 3 teen boys - ones away at uni though and other two moan if I moan first! Hubby us a night careworker at an old folks home and no I don't decorate embroider I research ideas using embroidery as a fine artist! Mat x
    If you get lemons, make lemonade
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    cocos = co-codamol and trammies = tramadol. Please accept my apologies for using forum slang. The only anti-inflammatory that worked for me was celebrex, two a day for a lovely year or so. They were prescribed by my rheumatologist and my GP would renew the prescription, then the PCT got involved and I was taken off those by the GP and given naproxen plus a stomach protector instead. Two drugs were cheaper than one, and didn't help. I've dropped the nap now. I remember Pete Sampras saying when he retired that the best thing about that was being able to stop taking anti-inflammatories.

    Long-term use is not ideal but with a possible long-term condition there may not be an alternative. Many people on here are on them 24/7, with omeprazole or lanzaprole too (stomach protectors). DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Thanks for explaining. I have seen these drugs referred to many times over the past months but you've made it all much clearer. I'll keep taking the Ibuprofen as directed then.

    Interesting about the eczema. Yes I had exactly the same type of parenting - I remember her strapping polythene bags around the worst patches with pink sticky tape to keep the skin moist?! Didn't work a bit though and the pink tape only caused more patches to evolve!

    Years later I met a very senior consultant dermy who told me that it was better to sock powerful steroid creams on to kill the eczema and then once it had done so to find holistic ways to kick the itch habit such as knitting and touching the spot and counting to 30. He had written a book about it and was horrified at my mother's poly bag idea - said it would have only made it worse because of the saline in the sweat agravating it. I could have told her that but she never listened!

    Does eczema look and feel very different to psoriasis I wonder?
    Mat x
    If you get lemons, make lemonade
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    They are totally different, I believe. I was told that psoriasis is caused by the skin renewing itself over a period of 3 to 4 days, rather than the usual 28-30 or so, so you end up with raised plaques of raw new skin covered by flakes of early-dead skin. Mine didn't itch, I don't know about others and how it affects them. It is caused by an over-active immune system, as is much else. It is entirely possible to get PA first then the skin trouble later - rare, but possible. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Sorry but I'm back wittering on my own post! What do people think about fighting your arthritic conditions? Learn to pace yourself as DD suggests or fight it like hell as Stu does? Like Stu I'm a fighter and feel resentful of every ache pain and stiff joint and spend my days combating it and then paying for this later. And there are aspects of fighting, both mentally and physically that do seem to work. If you keep excercising despite pain in knees, ankles, toes, back wherever then the muscles around the joints stay stronger and mobility less of an issue. Also fighting it feels right to me so it's healthy psychologically perhaps? :idea:

    But then learning to pace things better - especially if you have a full time i job is pretty essential also - learning to be more Zen about pain? Suppose it's a matter of treading a tight rope between the two for most of us I guess?
    Mat x

    Oh I've just read your reply DD and thanks for explaining. The rheumy did ask me about skin and I told him about the eczema but he was only interested if I had psoriasis to which I replied no. Interesting to know how they are different from someone who has suffered from both - poor you :roll:
    If you get lemons, make lemonade