Newly Diagnosed PsA - questions

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Seedy
Seedy Member Posts: 3
edited 11. Mar 2014, 05:01 in Living with Arthritis archive
Hello all,

I'm new here and found the forum as a result of being diagnosed with Psoriatic Arthritis this week. I began with a painful sole/ball of foot around the 4th toe in November last year and this led to dactylitis in that toe. Scans in the last few weeks have confirmed the diagnosis and I have some limited skin problems. The pain in my foot has all but gone, but the swelling in my toe remains and I gather may be permanent(?). The rheumatologist is suggesting, since a scan confirmed some evidence of problems internally in the 5th toe of the same foot (even though there is no pain and no visible sign) that I should be looking at going onto DMARDs (if it had been limited to the 4th toe she would be suggesting wait and see).

I have a lot of questions and concerns, but rather than list them all now, I'll stick with the main ones that are worrying me. I think the variability of the condition means I could have few or no further problems into the future or it could continue to advance. I'm concerned (and very annoyed!) at the need to be taking drugs, not least the possible side-effects - the Rheumatologist is suggesting its going to be eg a year on the drugs but realistically am I looking at a lifetime on them (I'm 46)?

I'm a keen guitarist, dactylitis in a finger that does the same thing as it did to my toe, if permanent, will more or less kill any chance of playing again. That would be a disaster and the thought of it upsets me more than I can say. Is such a development likely in most cases, if so, is it permanent or reversible, do DMARDs prevent it, if so, how effectively? Should I be agreeing to take the drugs now and give up on the hope of being one of the number who never have any other symptoms (I think this is a possibility?). I'm going in for a steroid injection in my toe/foot next week prior to making a decision, but is this something that will only delay further advancement?

I fully appreciate that these questions are not ones that can be answered with any certainty, that I can't expect a diagnosis and that every case is different, but I guess I'm looking to hear others' views and experience in facing some of these decisions. I also appreciate of course that the decision is mine and what may be right for me may not have been for others.

Sorry for the lengthy post.

Thanks.

Comments

  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
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    Hi Seedy

    Welcome to the forum, as it is OA I have I cannot help you, I am sure some of the auto-immuners will be along soon to give you the wealth of their knowledge. I just wanted to say hello and let you know you have come to a great place, lovely to meet you, hope to see you around........Marie x
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    Hi & welcome Seedy,

    I have PsA (Psoriatic Arthritis), OA (Osteo Arthritis) & Severe chronic plaque Psoriasis. I was diagnosed with PsA & OA age 37, I'm now 43.

    I seem to walk a different path to many PsA sufferers as I get hardly any joint damage from it ... Mine seems to be concentrated either side of joints & wears away bone due to swelling of tendons & ligaments. I do, However, get joint damage from the OA. OA can't be helped or controlled by medications such as mtx (Methotrexate) etc

    The medications can help to control PsA but there are no guarentees ... In ure shoes I think I'd do all I could to slow down the disease if there was even a possibility it could help. That is, of course, ure choice tho.
    No one (that I know of) can predict if it will spread to other joints so that's why I would choose meds!!

    I have widespread disease but initially it was only my ankle ... Well until they'd xrayed my pelvis etc I now have it in my neck, shoulders (with OA), hips & some fingers, they aren't swelling & disfiguring like many peoples do tho ... I'm so lucky in that respect!!

    I'm complicated by having such bad Psoriasis, most meds treat both but my skin doesn't get better for long so I'll be starting my 1st biologic in a couple of weeks. I was told a couple of weeks a month ago ... I'm not holding my breath!! :?

    I WILL be on meds for the rest of my life but so what? I need them to help control my autoimmune diseases I also need them for pain .... The prospect of life with no meds with the health problems I have is completely unrealistic!!
    If you had bad eyesight I assume ud be ok about wearing glasses or contacts or would you feel this same anger?? I ask as that is how I view my need for my meds.

    I'm sorry if I've been unhelpful :( I just tend not to stress over the same things as you. I'm more concerned with my quality of life so that I can play with my 2 gorgeous Grandchildren, meds are a small thing to me, whilst they're helping that is :wink:

    Good luck with ure decisions.

    Xxx xxX
    Healing Hugs
    Debbie.x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, I too have PsA but it was diagnosed far too late for any drugs to make a noticeable difference. Luckily I have a life history of taking medical drugs :wink: but I can understand your reluctance to obey this imposition. It's not on, is it? :(

    Here come some harsh-sounding words. :oops: I reckon you are very fortunate in being diagnosed so quickly on such little evidence and I would advise you take what they offer so you don't end up like me: I have PsA all over the shop (but not too much in the way of manky skin) plus OA in some my damaged joints plus fibromyalgia. I know that hindsight is a wondrous thing but I am convinced that, if my then GP was more informed about how inflammatory arthritis can present, and had referred me to rheumatology, I would not be in my current predicament. It was the physios from my local footy club (who were then Premier league) who did. (My friends reckoned that if anyone knew about fat knees, they would: they didn't but sent me to people who did. My left knee was only around 20" in diameter then but swelled to a gorgeous 27" ) I can only laugh - what's the point in doing otherwise? I began this in 1997 aged 38, I am now 55 and, to my mind, still a gorgeous woman despite a rather odd body and my reliance on walking aids. Others would disagree. :wink:

    Everyone's arthritis is unique, no-one can say what will happen, when or how badly because we all lack the ability to see the future - you realise that and that takes some doing. I hope that things turn out well for you - if they don't then we'll be here. For some the meds do what they should and I hope you will be included in that select number. Good luck and don't be afraid to take them, OK? You will never know unless you try . . . . . . . DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
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    Hi Seedy,

    No need to apologise for lengthy posting! :)

    Welcome to the forum and the PsA camp. I've had PsA since 1990, but everyone's different so I'm only an expert in my own case, if you see what I mean. That said, I'll see if I can help a little...

    First up, combining qs. 1 and 3, dactylitis. I'm sorry about your swollen toe and I empathise with your worries about guitar playing, being something of a musician myself. I've no experience of the condition, but I found some interesting reading: http://ard.bmj.com/content/64/2/188.full – 2005, but useful for 'Definition', 'Dactylitis—defined as a diffuse swelling of a digit—may be acute, with painful inflammatory changes, or chronic, where the digit remains swollen despite the disappearance of acute inflammatory changes.' So having a steroid injection might indicate whether your dactylitis is acute or chronic, but I don't know much about this so please ask your rheumatologist, just to be sure.

    Next, drug stuff. You're right to use the word 'variability', as no one's really in a position to predict disease progression, as my own rheum'ist admits! Current thinking in Rheumatology (also according to rheum'ist) is that it's best to hit arthritis hard at first signs of active illness. Once started on a DMARD (or DMARDs), patients are monitored via regular blood tests, including measuring levels of inflammation. If inflams subside, it's an option to decrease drug doses, slowly and carefully.

    I'm sorry this is a bit short 'n' sweet, coming just before one of my brothers turns up! I realise I haven't posted much about my own experiences, but if you'd like to get a picture, feel free to check out my blog: http://phoenixoxo.blogspot.co.uk/ :>)

    Best wishes,
    Phee

    *waves to Marie, Debbie and DD*
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • beckie89
    beckie89 Member Posts: 46
    edited 30. Nov -1, 00:00
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    Hi and welcome :)

    I got diagnosed with PsA in November/December time, after nearly 3 years of pain in my feet, toes, fingers and left knee. My nails turned all manky and pitted in all by 2 of my nails, and I suffer from chronic pain in the balls of my feet and the back of my ankle.

    Fingers and toes swelled up, and now I've started getting pains in my neck.

    I'll be honest, I would take and try whatever they give you. I'm 24 and would rather try anything to stop me having a life of pain, than worry about facing another 50 odd years (hopefully!) of suffering. But we're all different and only you know what is best for yourself!

    Sorry I couldn't help much, but I am sending healing hugs your way!

    Bex x
    <3 *Beckie* <3
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    Hello seedy and welcome from me too. I do understand all your concerns but we lack crystal balls on here :roll: and, unfortunately, there is just no predicting what an auto-immune arthritis will or won't do. I guess, if you've largely been in control of your life up to now, that will sound very scary but most of us have had to learn to live with uncertainty....and hope.....and the rollercoaster of 'what happens next'.

    I can promise you that none of us enjoy swallowing meds, except when we consider the alternatives. However, your rheumatologist does sound to be on the ball. I'd have confidence in her. I like the distinction she makes between 'one joint – wait and see', 'two joints – let's knock it on the head'. This sounds wise to me. Far better to clobber it from the start and then see where you are in 12 month's time, than to wait 12 months and find several other joints have joined the party. (By the way, with us auto-immuners, there is often a big discrepancy between disease activity and pain experienced. Just because there's litlle or no pain doesn't mean to say there's little or no disease activity and vice versa. We have to trust our rheumatologists.)

    I hope you can continue to play your guitar. If you get the disease under control it probably won't be something you need worry about for some time. But, even if you couldn't, it wouldn't necessarily be the disaster you now fear. I had to give up playing the piano years ago. Life does always have other things to offer. Adapt and survive :D

    If you do have a steroid jab, you'll probably feel cured. You won't be but you may then feel you don't need the DMARD. Many of us have a love/hate relationship with them. Personally, I'd take the DMARD any time. It's a more honest evil.

    By the way, mine's not PsA but RA – a similar and equally obnoxious beast. I was many years in before DMARDS were on offer. I do wish I'd been given them when I first saw the doc with what I then thought was chilblains on my fingers :)
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Hi Seedy, and welcome;

    I sure wish you well and I'm harboring some envy at your situation; to be diagnosed early on! Yay, I'm glad for you.

    I have PsA/spondylitis and mine was a mystery for 8 years. There was some creaking, stiffness and fatigue, then a troublesome wrist injury that got worse rather than better and several years later full-body pain in most joints and my back. I started taking DMARDs January 2013 and I am considered now to have failed the three I currently take and I will be going onto a biologic in May. What DMARDs have done is stop my symptoms from continually worsening, which had been the trend prior to about June/July 2013.

    While we have no way of knowing how things are going to turn out disease-wise, prior to my affected one wrist eight years ago, I was fit, worked full-time, hiked, and overall was a very physically active person. I would love to be able to go back and have my diagnosis then when it was just one wrist, some fatigue and stiffness. It's turned out to be a pretty nasty disease for me.

    So it may be unfair to encourage you when we don't know how your disease will turn out but I would follow your rheum's directions and take the drugs.

    Take care,
    xxAnna
  • Tubby
    Tubby Member Posts: 177
    edited 30. Nov -1, 00:00
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    I have PsA and I have daily battles about the drugs I take. The battle is primarily with myself but my body joins in too. I am 47 now and I was 45 was when I was diagnosed. I have gone through the DMARDS and I am about to start biologics (has took about 6 weeks from first suggestion to being approved but I have a tumour on my pituitary gland which has to be consider too). I work full time and I have pain full time too :) .
    This may sound a bit dim BUT my advice would be....try what you are offered but don't keep accepting the drugs if you think they are not working. I have had a bit of a battle with methotrexate, I tried and failed AND tried and failed. If the biologics don't work then I am not going back as me and Meth have definitely fallen out. I will go back to Sulphasalazine though as it take the edge of things. I have also had a bit of a juggle with the NSAIDS but have settled with Diclofenac supported by its mate the Paracetemols (co-codamols on bad days). I have tried Naproxen and Amitriptyline but neither suited me or my life. I have also had steroid injections (2) which have been very useful but, for me, to be saved for real emergencies or special occasions (volunteering at the Olympics was mine). The decisions are never easy but if you have any chance to slow down the progress of the disease, then take it. Good luck and keep asking questions on here, the folk here are great and have lots of experience.
  • Seedy
    Seedy Member Posts: 3
    edited 30. Nov -1, 00:00
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    Hi All,

    Thanks everyone for the replies, links, good wishes and advice. Its all much appreciated and has helped me a lot. I am going for the aforementioned steroid jab tomorrow and will quiz the Rheumatologist more on options and advice, but I'm likely going to go with the drugs being suggested (Sulphasalazine). I can see from the (very humbling) responses here that in many ways it could be much worse for me and and that anything I can do to stop it becoming in the future so has to be tried, so thanks again for helping me realise this.

    I'll post an update on my progress and in the meantime best wishes to all.

    Regards

    Seedy.
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
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    24, psoriasis arthritis in all joints. I think your going to be just fine. Best of luck!
    How am I gonna be an optimist about this?
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
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    Hi Seedy,

    It's good to hear from you again. I hope the steroid jab went well today and that your rheum'ist proved as helpful as we are on this forum :lol:

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    Hi Seedy,

    I'm glad the forum & all of our responses helped you to make a decision!! I, tho biased, think it's the right one :wink:

    I hope you find the steroid injection helpful :)

    (((Hugs)))

    Xx xX
    Healing Hugs
    Debbie.x