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    Old 06-10-2008, 03:31 PM   #1
    terri38
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    psoriatic arthritis

    Hi I have just been dx with psoriatic arthritis, in my hands, feet, ankles, knees and spine. I'm not really sure where to go from here, sometimes my back is so bad I can't straighten it, but the tiredness really kills me. Does anyone know if the medication will help it as well as the pain and inflammation? How bad is this likely to get?? I'm terrified of ending up in a wheelchair.. Because my back and knee are so bad.

    I was bit overwhelmed at the hospital and didn't get to explain how bad things were, because I hadn't known they were linked, and also didn't ask a lot of questions. My next appointment is 5 weeks away.

    Thank you for any help!

     
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    Old 06-10-2008, 08:18 PM   #2
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    Re: psoriatic arthritis

    Here's a link to the PA Association in the UK - [url]http://www.psoriasis-association.org.uk/PsATreatments.html[/url]

    Treatments are very similar to rheumatoid arthritis. Medications like methotrexate, steroids, NSAIDs and sulfa drugs, etc; but also the new biologics like Enbrel and Orencia.

    I hope you feel better soon, I know flares can be frightening. I've had juvenile rheumatoid arthritis most of my life. The good news is PA has a good prognosis and usually responds well to medication. Good luck!

    Last edited by AuntieLeela; 06-10-2008 at 08:19 PM.

     
    Old 06-10-2008, 10:18 PM   #3
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    Re: psoriatic arthritis

    Hi Terri,

    Sorry to hear you have been diagnosed with pa. I have had pa for 5 years now and tried most of the dmards available, and now waiting to see if I can get the anti tnf - enbrel etc. I have pa in my neck, elbows, wrists, fingers, hip, knees, ankles and toes. I am registered disabled which helps with parking badge etc as walking too far is very painful. I have good days where I can walk my little toy poodles and do the washing etc but I also have bad days where I sit and watch tv and go on the internet!! The drugs do help, I am on leflunomide and arcoxia at the moment and my pain is bearable. I also have a hiatus hernia so have to take drugs to avoid trouble with my stomach from the drugs for the pa (nightmare). Do not let it get you down, easy to say but hard to do. I went into a very depressed state last year thinking my life is awful (I am 50 now). But I decided the only person that can really help me is me, so I bought a little poodle (doesnt need walking too much) and got into showing him. I only go when I feel good and he has made me get up in the morning and given me a reason as he needs looking after. My family help as much as they can. If you have any questions you would like me to help with please ask. One important thing - always rest when you feel rough, dont fight it, when you feel better get your jobs done.

    Ronnie

     
    Old 06-11-2008, 07:40 AM   #4
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    Re: psoriatic arthritis

    Hi Ronnie,

    thank you very much for this. Its good to know I have someone I can chat to about this. I've managed to arrange to work from home but was so tired the last few days I simply couldn't wake up??!! It was awful, but I feel bit better today, thank God. I'm so confused, will the meds help the fatigue Ronnie?

    Thank you so much

     
    Old 06-11-2008, 07:42 AM   #5
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    Re: psoriatic arthritis

    Hiya,

    thanks a million for this. Its all a bit daunting, can you or anyone else think of questions I should ask my Rheum?

     
    Old 06-11-2008, 08:23 AM   #6
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    Re: psoriatic arthritis

    Hi Terri,

    I am always looking on these boards, so of course will help you as much as I can, I know what you are feeling like. Sometimes people wonder what is wrong with me because unlike rheumatoid arthritis, I do not look as though anything is wrong, with rheumatoid their joints really change. My hands are the worst for shape, my fingers are all bent at the top and my knuckles are large. My knees swell terribly and my ankles today are huge. I have found the meds do help with pain, but unfortunately not the fatigue, sorry. I feel extremely exhausted by the end of every day, the meds you take also add to the tiredness but sometimes just out of the ordinary I wake up and feel really good, that is when I get more done. I gave up work last year as not only did I have my problems but mum has cancer and I have to help her as well. Giving up work was the best thing I could have done, it took the worry away of trying to feel and look good to do a days work. The leflunomide (dmard) gives me terrible diarrohea and I was having to get up at 5 in the morning to go to the loo 6/7 times before I went to work then at work didnt eat or drink because didnt want to embarrass myself. Now, at home it doesnt matter. You must make life as easy as you can. I dont know how old you are, but you must rest and get as much sleep as you can. I have splints for my wrists, ask when you go to rheumy whether you need splints to help your wrists. Do all your housework etc in the early morning. I then rest in the afternoon, ready to cook dinner, as I have my husband, son and father-in-law looking at me for meals every day !! lol Can you walk far? Have you got a badge to help park in disabled bays to save you walking too much? You need to see what you can get to help you every day. I have had grab rails put in at home, I hated it as it looked sad but I couldnt do without them now. Please ask me anything. I said to the consultant that I felt like I have a bad case of flu all the time, and he said that is because psoriatic arthritis is an inflammatory disease the same as rheumatoid, it is a very frustrating illness as you will see from all the threads here. Take care,

    Ronnie

     
    Old 06-11-2008, 08:27 AM   #7
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    Re: psoriatic arthritis

    Terri,

    I have a wheelchair! do not worry about it, I dont use it much, but on days when we want to go out to shops or zoo or something which involves a lot of walking, we get it out of the shed, put it in the car and if I ache badly my hubby pushes me around. It is a god send some days. Other days I cant think why I have it, silly isnt it.

    Ronnie

     
    Old 06-11-2008, 12:50 PM   #8
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    Re: psoriatic arthritis

    Hi Ronnie,

    thanks again. I feel like I have flu all the time!!! Thats it exactly. I have been registered disabled and blue badge is a great help. The days when my back goes are horrific, and lying down is all I can do. Other days (like today) aren't too bad, knees etc ache but fatigue isn't too bad. All i've been given is etoricoxib and naproxen, but i'm not sure, do I take them every day or only when pain is really bad? Are they preventitive or pain killers? My Rheumy also talked about injections? Are they any good?

    I'm 38 and seperated, but my two girls (15 and 20) are a great help to me, also I can work from home as little or much as I can do, and I pay a girl to clean house 3 days a week, shes a godsend!!!

    My back and knees are by far the worse affected by this hideous disease, but I didn't really get to tell the specialists this as I was totally overwhelmed! They didn't ask to xray my back, and I think thats the main culprit, do I just say next time? Do you belong to any support groups Ronnie?

    Tx

     
    Old 06-11-2008, 02:50 PM   #9
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    Re: psoriatic arthritis

    Hi Terri,

    No I do not belong to any support groups, but I read everything I can about the disease, good old internet. Etoricoxib is the anti inflammatory I take (arcoxia) it is not a preventative it is a pain killer. My preventative is the Leflunomide (dmard). The injections your consultant spoke about would probably be the anti tnf meds like humira or enbrel. You will have to have an assessment to see if you can get the meds. (not sure about ireland but I had to have one). I have taken methotrexate but was very poorly on that, sulphasalazine was given to me and it did nothing, and spent a year on low dose steroids, best thing for the pain and inflammation, but bunged on a load of weight and my face got podgy. Stopped the steroids went on to Leflunomide and etoricoxib and pariet for my stomach. I have been told that pa responds well to enbrel (injection) but I wouldnt know. Thank goodness you have your daughters, I am so glad I have an understanding hubby and a wonderful son otherwise I would be so miserable. When do you see your rheumy again? What do you want to take for the disease? Have you looked them all up on the internet? Will give you some idea.

    Gnite Ronnie

     
    Old 06-12-2008, 07:48 AM   #10
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    Re: psoriatic arthritis

    Hi Ronnie,

    I have looked on internet but the different meds still confuse me. I see my Rheumy in 4 weeks. Just noticed that when I type I don't use my index or middle finger at all! I started to use my ring finger and didn't even notice! The other fingers feel thick and stiff.

    Ronnie, it says there are different degrees of the disease, and having it in more than 5 joints and back is classed as severe, is this right or am I not understanding? Plus, does anyone ever say what prognosis is? I mean if its severe, how bad can it get??

    X

     
    Old 06-12-2008, 12:59 PM   #11
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    Re: psoriatic arthritis

    Hi Terri,

    I have trouble typing - my fingers click and lock. I think 5 joints hurting and your back painful is classed as severe. I have it in so many joints that I am classed as advanced pa. I have been told that it will never go they are just trying to stop it getting worse with the dmards. The new injections are supposed to stop it getting worse and make you feel a lot better. Please let me know how you get on with consultant in 4 wks. Have you looked at the website arc and called up psoriatic arthritis? It explains it well. This is how I am daily - this morning got out of bed, cannot walk properly to the toilet, need the grab rail to get me up. Walk to garden to let dogs out, walk round kitchen and feet start to loosen up, aching this morning, so just hoovered and polished. Sat on the internet. This afternoon feel extremely agitated and tired, very tired. Couldnt even be bothered to cook, got take away! Took dogs out for small walk, plonked myself in my chair and watching tv tonight, and writing to you. Very dull quiet day, but hopefully feel more lively tomorrow. One thing I have found annoying is that I can never tell anyone that I will do anything or go anywhere until the day because I never know how I will feel. Dancing and socialising have gone out the window and I hate it. I used to go to friends and be the life and soul, drinking and dancing, I used to love working and laugh and joke with friends, now I feel lonely and dull and very very annoyed that this disease has picked me...sorry, bad day will stop waffling. I think most people I have talked to have got on to the anti tnf meds and feel almost how they did years ago, if you can, see if you can get onto them. They are not keen with me as I have had 3 blood clots in the past 10 years. Keep chin up, and write anytime. Ronnie

     
    Old 06-12-2008, 03:17 PM   #12
    terri38
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    Re: psoriatic arthritis

    Hi Ronnie,

    sorry to hear you're having a bad day, fingers crossed (chance would be a fine thing!!) you'll be not too bad tomorrow.

    Today the way you described it, is me too, my feet won't settle for quite a bit and I move very awkwardly. The thing that really gets me down is the fatigue, I just sleep and have no control and its quite often. For a long time I didn't know the tiredness and aching were connected, my back would sieze and I would be bewildered, thinking its was my kidneys or an old injury, even my mattress!! Even though it'd be horrific for up to 2 weeks. And then out of blue I couldn't waken properly, just slept all day and struggled to bathroom. I truely thought I was really unlucky and had serveral things wrong! Now I know and I'm scared, because that means it wasn't something that might pass, I have to actually live with it.

    Ronnie, i phoned my Rheumy's secretary to say I thought i needed back xrayed before next appointment because it wasn't ordered (which i know was oversight, the Doc couldn't remember which joints to xray, there were that many), and the sec said, 'oh you've an appointment in July, thats very quick', and I explained I had only been dx, she said 'even so, they NEVER see patients every 6 weeks, I'll have to double check'. That scared me, why do they need to see me then, is mine very bad?? They told me nothing, not prognosis, or anything.

    And Ronnie, I know what you mean about being unable to plan, it's so awful, I've missed so many important events and just can't socialise until very last minute. It's one of the worst things.

    I hope and pray you have good day tomorrow, today was ok for me, and ok is just fine these days!!

    xx

     
    Old 06-13-2008, 05:48 AM   #13
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    Re: psoriatic arthritis

    Hi Terri,

    Dont worry about quick appointment, may only mean that they had a cancellation when you were given it. When I see my consultant, they usually give you two or 3 months before the next one, to give the drugs chance to settle in. Yes, thank you I am much better today, decided to colour my hair - will regret it, but fancy doing something to myself. I lost a lot of my hair two years ago after taking methotrexate and the drug I am on now is making it very thin (another bad side to the drugs and arthritis). So going to make myself look better (hopefully) this afternoon. I had xrays on feet and hands in March and have to wait until Monday forthe results. Looking forward to my appt on Monday to discuss anti tnf drugs etc and get results. Going to make the most of feeling better, so will sign off, no doublt will be exhausted tonight. Tiredness is one of the worst things apart from the pain.

    Take care, Ronnie

     
    Old 06-13-2008, 05:07 PM   #14
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    Re: psoriatic arthritis

    Hi Ronnie,

    I'm delighted you're having a good day! I am too. Why did you have to wait so long for xray results?? Is that normal?

    I think i have it in feet AND ankles, is this possible? Feet sieze up, and ankles v.painful.

    How common or rare is P.A?

    Sorry to bombard you with questions!

    Txx

     
    Old 06-14-2008, 01:58 AM   #15
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    Re: psoriatic arthritis

    Hi Terri,

    No worries about questions, glad to help. My feet and ankles are always hurting, so yes you can have both. My legs are the most affected, knees, ankles and toes. In the morning my feet are really painful to walk on.

    I will get x ray results when I go on Monday because its my 3 month check. PA is not rare but it is more rare than RA. It also hits people either mildly or severely. If I find out more on Monday will pass it on to you.

    Have a good weekend.

    Ronnie xx

     
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