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A QUICK CHECK IN

scorpioscorpio Posts: 159
edited 29. Sep 2010, 03:07 in Living with Arthritis archive
Sorry i have'nt been around for a while, but i needed space and tie to adjust.......as you may remember i was pretty knackered last time i was on here and my doctor pu me on prednisolone to help me get back on my feet (literally)

my polyarticular psoriatic arthritis has worsened,,,,,,the pred worked, but now i am off the red wonders i am starting to suffer again.
The psoriasis is covering my body and i have it allover both arms and legs including feet and hands (and all nails) - it is also dominating my back, groin, stomach, chest and my entire scalp........what joy - at least it has not touched my face

the arthritis side is getting horrific - i hear inner rumbling when i move. The arthur is cripling me on my hands and fingers including an indescribable pain in my thumbs (so bad i cannot open doors)

Comments

  • scorpioscorpio Posts: 159
    edited 30. Nov -1, 00:00
    part 2

    i cannot change gears in the car and my body really is screwed for a 33 year old

    i am taking:
    diclofenec - 3 times a day
    paracetamol - 3 times a day
    codeine phosphate - 3 times a day
    lanzapranasol - 3 times a day
    plus a multitude of vitamins an supplements

    i went to see the dermatologist last week and he has recommended adulimumab (humira)........so i am awaiting blood tests (but i know my liver panel tests are high as i like a drink) and i also have to go see a gastro enterologist (about my liver.....she wants to stick a needle into it .....no bloody chance) and also the rheumy.......in the mean tim my dermatologist has applied for funding
  • scorpioscorpio Posts: 159
    edited 30. Nov -1, 00:00
    part 3

    so hopefully it will all come out in the wash..........i just hope my liver tests are not too bad...........i got took off mtx because of my liver panel tests.........i have an appointment with the dermy in 6 weeks........i may stop drinking from now so that my i have a chance if they need further bloods

    advice please, i really need it - i am soooo worried about going onto humira

    regards, chris
  • sharmainesharmaine Posts: 1,638
    edited 30. Nov -1, 00:00
    Hi scorpio

    So sorry to hear about all your troubles. Never mind coping with arthur but to have psoriasis on top of it all must be dreadful. My OH suffers really badly with eczema and he's found some relief with using (pine tar soap - on the packet it says its good for psoriasis too); he also uses Aveeno products - poor thing has it all over his body and it drives him to distraction when he has a flare. He also puts Potassium Permanganate BP in the bath only a pinch of the powder is needed. Make sure you clean the bath immediately otherwise it will stain. Due to his atopic eczema, I cannot use conventional cleaners in the bath everything is cleaned with white vinegar then rinsed with water. My daughter in law suffers with psoriasis (mainly on her face and head) and she's found taking these precautions also help.
    My husband has to see the dematologist every 6 weeks.

    Have you been referred to a dermatologist re your psorisis? What meds are you on for your arthritis? The co-meds make your skin dry and itchy so you may want to stay away from those. I used to be on co-dydramol and my skin which is normally great was dry and itchy - I had to smother my body with aqueous cream. I'm glad I don't have to take those.

    I hope you get some relief soon.

    Regards
    Sharmaine

    scorpio wrote:
    Sorry i have'nt been around for a while, but i needed space and tie to adjust.......as you may remember i was pretty knackered last time i was on here and my doctor pu me on prednisolone to help me get back on my feet (literally)

    my polyarticular psoriatic arthritis has worsened,,,,,,the pred worked, but now i am off the red wonders i am starting to suffer again.
    The psoriasis is covering my body and i have it allover both arms and legs including feet and hands (and all nails) - it is also dominating my back, groin, stomach, chest and my entire scalp........what joy - at least it has not touched my face

    the arthritis side is getting horrific - i hear inner rumbling when i move. The arthur is cripling me on my hands and fingers including an indescribable pain in my thumbs (so bad i cannot open doors)
  • scorpioscorpio Posts: 159
    edited 30. Nov -1, 00:00
    Yes, i was referred because of the P - it is the itchiest it has ever been......i never really have a problem with itchiness, but at the moment it is unbareable........i am tearing myself apart and all of my clothes are spattered in blood, as is the bed

    bloody nightmare
  • dorcasdorcas Posts: 3,538
    edited 30. Nov -1, 00:00
    Hello Chris :D

    I too have PA affecting numerous joints but do not have the psoriasis.

    I was on Humira in combination with Mtx for almost 5yrs and tolerated it very well. The only reason I came off the drug was due to my body producing antibodies rendering the Humira ineffective. I've just started Infliximab which is another of the anti tnfs.

    I'm not sure what your concerns are about starting Humira? but if you are found suitable for biologic therapy then you will be monitored very closely so that if you develop any unwanted side effects or you blood chemistry alters then it would be picked up very quickly.

    If you have raised LFTs but know that stopping alcohol would help and so 'allow ' you to access treatment for your PA then you do have a choice that only you can make .

    I've posted you a link to a very helpful website by The Psoriasis and Psoriatic Arthritis Alliance which explains better why/ when/ how biologics are used to treat Psoriasis. I hope this helps!

    http://papaa.org/tiki-index.php?page=Immunosuppressants and Biologics

    Iris x
  • scorpioscorpio Posts: 159
    edited 30. Nov -1, 00:00
    thanks iris, my concerns are very childish and selfish.....LOL:

    i like a drink and don't want to stop (although i think it will benefit me allround)

    and

    i hate needles and do not fancy injecting myself every week or so

    that is it really
  • skezierskezier Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Chris,

    Nice to see you again :D

    Your concerns are not childish or selfish they are very real and hopefully iris's link will help to get a bit of a handle on things? I am one step behind you in the biologicals and have been told I wouldn't get funding but.....

    Hang in there cus well with luck the funding will come through and you will start to feel better.

    I just changed to an Automatic car ad its so much easier and might be worth thinking about?

    I know how hard it is being young with this but you will get there and please remember that. I promise you a few years ago I thought that was it.... then they sorted me out abit of decent pain control and well that's what you need. Its going to get better so hang in there.

    Please keep in touch with us, I know I can't do much except support you when you need it and just be about when you don't. Cris x
  • scorpioscorpio Posts: 159
    edited 30. Nov -1, 00:00
    cheers

    i am not sure if i will get the funding yet, but he seemed pretty confident..............we shall see

    hopefully i will get a green light
  • skezierskezier Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Cris,

    Will keep fingers crossed for you and well if you get it there could be a whole chunk of improvement. Cris x
  • scorpioscorpio Posts: 159
    edited 30. Nov -1, 00:00
    i certainly hope so
  • woodbonwoodbon Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi have you discussed this with anyone apart from us? I wonder if you need some help in coming to the decission that is best for your life. Maybe your GP or one of the voluntory groups might help. I hope you get everything sorted out and decide what you need to do.
    Love Sue
  • tkachevtkachev Posts: 8,332
    edited 30. Nov -1, 00:00
    I am pretty sure you are a good candidate for Humira. It has proved my blessing for 2 years now. I have R.A.

    I am sorry to read that you are in so much pain and discomfort.
    By the way I still do drink with MTX and Humira. Just a couple if out and about or stressed! But Dorcas has made a very good point and you want to help yourself as much as you can.

    Elizabeth
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Ther humira injections are very straightforward. My stuff comes in a pre-loaded 'pen' - you don't see any needle at all, just pick up a good wodge of flesh, press the plunger and a few seconds later it's done. It does sting, but that is preservative and it wears off. anti TNFs have a good track record for treating the psoriasis side of PA, I have read a number of articles about people who have had good results from them, especially infliximab, so it may well be very beneficial for you. I am not sure if enbrel has been passed yet by NICE as an accepted treatment for P.

    I know what you mean about the drinking thing tho - I have had some humungous sulks in the past about giving up alcohol, which I did with very bad grace, and things worsened quite markedly so now I no longer give a damn: my liver figures are allowed to go up as high as 40, according to my hospital, I have monthly tests now and they hover around the 18 - 25 mark, which many of the staff reckion is better than theirs! This is despite being on humira for the past 16 months, injected meth for just over two years now, I think, oral steroids (3.5 years) and other stuff too. I need some compensation for the wreck my life has become - that's my reasoning anyway! I wish you well. DD (who also has PA, but with very little P)
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • scorpioscorpio Posts: 159
    edited 30. Nov -1, 00:00
    woodbon wrote:
    Hi have you discussed this with anyone apart from us? I wonder if you need some help in coming to the decission that is best for your life. Maybe your GP or one of the voluntory groups might help. I hope you get everything sorted out and decide what you need to do.
    Love Sue

    i know what i need to do - i am fully prepared to give up alcohol if it makes me healthy.........fully prepared

    i can still have the odd drink, just very very moderately
  • scorpioscorpio Posts: 159
    edited 30. Nov -1, 00:00
    thanks for the replies everyone, they have helped eased my worries

    i am due my 1st blood test tomorrow, which will show panel tests of around 300 as i have had a few drinks over the w/e

    i shall refrain tonight and be very liberal over the next 6 weeks until my next blood tests
  • dorcasdorcas Posts: 3,538
    edited 30. Nov -1, 00:00
    hello again Scorpio....

    sorry I disappeared on you after asking you a question... bad manners. sorry. :oops:

    Fear of injections is very real.... and self injecting does take a bit of getting used to. but the nurses won't leave you to manage on your own until you are confident at doing it. :wink:
    when you think about it.. it's perfectly reasonable not to want to inject yourself; it's part of the self preservation instinct in all of us!

    Some people cannot self inject and if that's how you feel then there's no shame in it. :!: all I would say is ...give it a chance, you might surprise yourself. :D

    I can't tell you what to do about taking/ not taking alcohol.... and it maybe depends on the amount you're talking about...also not my business. :| it does not say that you have to avoid alcohol when on Humira so that might help you. :wink: but I got the impression that you may be very sensitive to alcohol anyway given your fluctuating LFTs?

    Are the docs talking about re-introducing Mtx? (Humira works best in combo with Mtx so they say) and alcohol and Mtx together can cause liver damage. ...so the advice is 'to avoid alcohol'...it's in the meds warning leaflet and the info leaflet given by rheummy.(not just me being overly cautious!)

    I do hope that your docs get the funding for Humira.... seems to be a bit of a lottery depending on which health authority you're in :roll: ...and that the Humira is effective in controlling both the P & the PA.

    let us know please how you get on?

    Iris xxx
  • scorpioscorpio Posts: 159
    edited 30. Nov -1, 00:00
    cheers iris......i did not know it ws so hard to get the funding;i honestly assumed it was a given

    i'll have to keep my fingers crossed
  • ironicironic Posts: 2,386
    edited 30. Nov -1, 00:00
    Hi Chris,

    I was wondering how you were. Nice to hear from you. (well not to hear that you are that you are having a rough time though).
    Hope the job is going ok.
    I do hope things improve for you soon.

    Please keep us updated.

    Lv, Ix
  • scorpioscorpio Posts: 159
    edited 30. Nov -1, 00:00
    thanks for that, it means alot to speak to like minded souls - work is keeping me soooo busy i forget to check in..........i am a plodder by nature, so i just get on with it; rather than going to the docs and the hospital i wait for probs to get unmanageable, then i go - not ideal or sensible, but it is the way i am built. I am trying to change this though

    regardss, chris
  • frogmortonfrogmorton Posts: 26,177 ✭✭✭
    edited 30. Nov -1, 00:00
    Oh Chris

    I am so sorry you feel so sh*t :( I also appologise for somehow missing your thread.

    I am so gald lots of peopel are supporting you on here who knwo far more than me. The only thing I DO understand is the bit about you enjoying your drinks :( My Mum had problems with this too when her heart was giving up and they wanted her to stop - I think aloogether to go on warfarin.

    She cut down like you and drank moderately after that and they did put her on warfarin and allow her to drink in moderation after that.

    I hope it might be possible for you to settle things so your life is tolerable.

    The thought of what you cannot do at the moment made my eyes run :(

    I really hope things run smoothly and they do try the humira - then - that it's the best thing ever for you :)

    LOve

    Toni xx
    Love

    Toni xxx
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hi scorpio, how are things? Were the bloods as bad as you feared? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • scorpioscorpio Posts: 159
    edited 30. Nov -1, 00:00
    thanks Toni...............

    bloods were fine - hopefully they will not show me to be a raving alco :D
  • skezierskezier Posts: 12,150
    edited 30. Nov -1, 00:00
    Oh Chris they wont you will be fine! I so hope it all goes through for you and they start you on something that will help. i think the drink thing is just have a few...... ask your rumo cus they all seem to have different ideas.

    Good luck and let us know please? Cris x
  • scorpioscorpio Posts: 159
    edited 30. Nov -1, 00:00
    i will do:

    years ago i really did hammer the drink, but now i have a 2 or 3 cans after work each work night - on the w/e i may have 5 pints a night (sat and sun)........so nothing mega, although i do have the odd night where i cut loose..........well, either way i have trimmed the drinking down for what i am expecting

    time will tell
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