Deteriating with Psoriatic Arthritis in the last 4 weeks

March1
March1 Member Posts: 6
edited 1. Feb 2013, 08:21 in Living with Arthritis archive
I was diagnosed with Psoriatic Arthritis 4 weeks ago after having hip pain for 18 months which the rheumo's are looking into to see if it is linked with the Psa.
I appear to have it in most of my joints and were put on 15 mg Methotrexate straight away and had the cortizone injections. My arms and hands felt like they were on fire and I had reduced movement in my hand
Over the last 4 weeks my right hand has seized with my fingers bent and I have no or little movement in them. Both my knees, ankles, wrists are so weakened that I have had to get walking sticks to help with walking.
My spine is also in great pain and I have no doubt that will begin to cause me problems.
I am 38 active although I do smoke and I am begining to think that I am going to end up paralyzed as each day that goes by I am losing more movement and my joints are becoming ever weakened.
I am begining to wonder whether my arthritis was diagnosed too late as I was seeing a pain management team who were looking into nerve pain in my hip and missed the psoriasis I had on my legs.
Anyone else suffered simular stories ??? :?

Comments

  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    hi i know dd has this and will be able to give you advice i not even sure which one i have but got meds to help so not all bad val
    val
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Hello March1. It's good to meet you though I'm sorry you had to find us.

    Mine is Rhematoid, not Psoriatic arthritis but there are many similarities and treatments are similar. I'm sorry you're in so much pain right now and weakness too. I'm afraid it's early days yet if you were only diagnosed 4 weeks ago. Meth can take several weeks to work and, as for the steroid jabs, I love them but they don't work for everyone. I'm afraid it's all a bit hit and miss, trying to find which meds work for which people. I hope the meth will soon kick in for you but, if not, they may try something else with it or may switch you to another med. Sometimes it's just a matter of hanging on in there and trying not to worry :roll: I've had RA for over 50 years and I'm not paralysed though not many bits of me work as well as they used to - well, probably not any but I only use a wheelchair for long journeys. I'm sure there'll be someone along tomorrow who can help you more. Take care.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • March1
    March1 Member Posts: 6
    edited 30. Nov -1, 00:00
    Thanks for the welcome guys,
    Intregued to see how bad mine gets or the extent of the damage I have already suffered. Got to wait till August to see specialist again and dont know what shape I will be in by then.
    I am used to the pain management already from 2 years of chronic pain in my hip and now just used to it being more widespread.
    What I am not used to though is not being able to walk more than 50 metres unaided without my knee's giving way or having to rely on walking sticks already.
    I just feel mine is spreading like a wildfire and Im aware that Methetrex takes weeks or months to start working.
    Wonder if its possible to have PSA RA and Osteo all at the same time ?
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hopefully DD will see this soon and come on...shes the expert on this.
    I have OA....I do know she has OA as well so yes its possible to have both

    Love
    Hileena
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    It's certainly possible to have OA with either PsA or RA. In fact, for some of us who were diagnosed before the disease modifying meds came along, OA has been an inevitable add-on. I think (But remember I'm not a doc) that it would also be possible to have OA somewhere - maybe as a result of a previous injury - and then contract PsA or RA independently. However, I don't think I've ever heard of someone with both RA and PsA.

    If things continue to deteriorate, your GP could probably prescribe some anti-inflammatories to add to the mix or your could ring your rheumatology helpline for further advice. I'm afraid you're currently stuck in the in-between stage just waiting to see if the meds work.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Misscreant
    Misscreant Member Posts: 32
    edited 30. Nov -1, 00:00
    I too have been alarmed at the speed with which things have developed with me. Hang on in there and also remember that your deportment will change with your pain which will put strain on different parts of your body. I have to use a walking stick and as a result am now having problems with my wrist and my chest. :? Sorry to see you here but welcome anyway.
    I am not a complete idiot, some parts of me are missing!
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    hi and welcome to the forum from me :D

    I just want to say that I hope the methotrexate and the injections start to make you feel better soon.

    Love Julie PF xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's lovely to meet you and I am glad you have found us. In April I began my 16th year of living with it: I began having problems in 1997 (aged 38) with my left knee, in 2002 I had an op to sort matters out and I began sulphasalazine. The op was repeated in June 2003 and I was then classed as having an 'inflamatory arthritis'. In October 2006 my skin duly obliged with a lovely bout of P so the label was attached but nothing changed treatment-wise. The damage to my knees and ankles has led to OA in those joints, I cannot walk without my crutches and I now have a four-wheeled rollator for longer trips out. Other PsA-affected joints include my toes, sacro-iliacs, fingers, wrists, elbows and I am also having trouble with my neck. When I flare my shoulders join in, probably because they can. :wink:

    PsA is difficult to diagnose as it is a sero-negative auto-immune disease so it can take time for things to be sorted on the medical front. The idea of the meds is to slow the progression of the disease thus hopefully minimising the possible joint damage. I passed seven years without any treatment, hence the pickle I am in now, so hopefully the meth will soon kick in for you and get to work on controlling your immune system. My PsA is well-controlled by the meth, sulph and humira that I take so I guess that is a good thing. The OA is, perhaps, my bigger problem but I have to wait another two years for knee replacements as, at the age of 53, I am too young.

    I would urge you to get used to using the sticks, they should take the strain from affected areas thus helping your posture and hopefully not putting the wrong kind of stress on joints that may be OK. In trying to get about without aids we end up throwing our bodies out of position as we try to minimise the hurt etc and in the end this only causes further problems. Right, my fingers are fizzing so I have to go. I hope you are having a pleasant day in the sun - please use a decent factor sunscreen as meth and sunlight are not happy bedfellows, your skin's photo-sensitivity can increase thanks to the drug and sun-induced meth rash is not pleasant (I know, I've had it a couple of times). Take care and I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hi March1
    Sorry I cant offer any advice, but I just want to add my support, and I really do wish you well with your treatment xx
    Love
    Barbara
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi March,

    Pa is unpredictable and it sounds like your having a flare there for sure. I know its not possible to say when but it will back off.

    Its easy in the earlier days to see horrible things ahead for you BUT March it gets easie and they will give you some kind of meds to help both control it and ease the pain for you.

    My pa I had sometime before they 'found' it. I am talking years, maybe as long as 10. I do have a bit of erosion in the wrists but they also have oa I them so with me they don;t try too hard re the pa..... Its still taken years to get this erosion and that was uncontrolled... It still isn't but i am a **** for forgetting to take the mtx so half my fault.

    I just wanted to say that this many years down the road it still has;t got me yet so don't let the future run away with you if you see what I mean?

    Hang in there and I wonder if physio might help with keeping the joints moving? Its a fine line between making them work even if they hurt to move and over doing it so they hurt for a lot longer afterwards.

    The other thing I have learned (had the OA in the back since my teens) muscle tone is so important and helps so much in the fight back against both the pa and the oa so again maybe physio could help you? Be worth asking I think.

    I promise you even after all these years it hasn't done my starting fear.... Its done a lot but i am still able to cope with what it throws at me so hang I there as the future maybe a lot better than you think. Nice to meet you. Cris x
  • March1
    March1 Member Posts: 6
    edited 30. Nov -1, 00:00
    Thanks for all the support and advice very helpful and welcoming.
    Will keep you updated with my progress
    March1 :D
  • March1
    March1 Member Posts: 6
    edited 30. Nov -1, 00:00
    8 months on and finally diagnosed with a bone spur on my hip bone and awaiting an operation for that. this is as well as Psoriatic Arthritis in my knees, hands, feet, back and hips.
    The bone spur has grown as a result of the arthritis affecting my hip.
    For info my hip has been bad for around 3 years and yet the rest of the PA has only come on in the last year so its possible that I have had the arthritis a lot longer than the symptons I have felt over the last year.( swollen joints etc)
    Still on 15mg Methotrexate weekly and 3000mg Salazopyrin daily which are not really making an impact on my pains and aches.
    Walking without sticks is impossible and so is laying on my bad hip side.
    Bad days Im tired and feel unwell, but I am also trying to continue with as much of my normal life as possible - work, dog walking, walking etc. However always needing my walking sticks when I walk.
    Driving is pretty impossible for me due to dizziness probably from the Methotrexate.
    Did try jogging recently to see what it was like but my knees would not take it at all.
    One thing to try to do is no matter how bad the pain gets, keep trying to smile :). A happier person will get on better with Arthur and not let it get to them too much.
    Will update again after visit with surgeon
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    I'm sorry you're having so many problems and I hope the surgeon can help. One thing you say keeps nagging at me - you mention dizziness and say it's probably caused by the methotrexate. It might be but I think you should maybe get it checked out as it could also be caused by lots of other things.

    The sticks will certainly help to take some pressure off so do use them. I imagine jogging's about the worst thing you can do for it though. Do be careful :)
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    Hi - I know this will be very hard but smoking is definitely seen as a major contributor to the seriousness of these autoimmune conditions such as RA and PsA so if you can try and put the energy you put into being active, jogging etc into quitting smoking instead, along with some gentler exercises you could get from a physiotherapist - I think it would be worth the effort in gold.

    I have no advice for you apart from quitting smoking and not jogging while you are flaring - but wish you much luck. Methotrexate has made a huge difference (RA as a working diagnosis - "but things could change") to me and you are at the very hardest stage now I believe. None of these drugs work fast but when they do it can make a huge difference so hang in there. Mat x
    If you get lemons, make lemonade