Hi everyone

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Mattb84
Mattb84 Member Posts: 2
edited 28. Nov 2023, 14:04 in Living with arthritis
Hi I’m Matt. If it’s ok I’ll just run through my story to see if what i say connects with anyone with similar experiences. I’m quite a private person and never really spoken with anyone in any depth about my condition and how it’s effected me but I found this site and I think it would be good for me to talk about it with other people in the same boat.

I been suffering with PsA about 5 -6 years from the age of about 28-29. I was playing semi professional football and golf at a 4 handicap at the time. I first noticed pain playing a game and my knees just started to really ache and I had to sit down. This happened on and off fora few weeks and one day on a Sunday I woke up and literally my legs wouldn’t bend I was unable to walk for several hours which was pretty scary. I thought maybe just over done it playing food ball but when I played golf my wrists And fingers were also starting to hurt. To be honest Arthritis never crossed my mind. I thought I was a very fit 29 year old guy and this couldn’t happen to me. Eventually went to the docs and tried to find out what was wrong but took a while to get a diagnosis. I had to give up all sport in the short term which I was devastated about.

My wife and I were planning on having a baby and when the docs told me about the drug methotrexate and the effects it could have on a baby it was pretty worrying. I had to make the choice between my health and having a baby. I chose the baby and we tried for several months to conceive without success. 6 months later my wife became pregnant but I didn’t want to go on the medication incase of complications. Unfortunately we had a miscarriage just before the 12 week scan so after another 5 months of waiting and then 5 months of trying she became pregnant again and 9 months later little baby Rosie popped out all beautiful and healthy.

This was a couple of years down the line and I could now start some treatment. I had developed lots of marks on my body and was having to have UV light treatment to help. I got onto Methotrexate but after several months didn’t see any improvement so was advised to stop and they would look at other options. By this point I could barely get in and out of my car or play rosie and struggled to walk at times. it really was a hard time for me mentally although I tried to keep it together as my wife was suffering from post natal depression.

Thankfully I was given the drug Cimzia and it really has changed my life. My skin is clear and it allows me to live a “normal” ish life. I never was able to return to football but still play golf when I can to a fairly decent level with the help of a few pain killers every now and then and shot my best ever round last year (a 6 under par for any golf nerds on here) I’m pretty mobile although still a bit slow getting up off the floor after playing with my daughter.
I’d love to speak to people who have or had similar experiences to me share stories, tips and advice on how to deal with them.

Thanks for reading.
Matt

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hello Matt and welcome to the forums from the moderation team.

    We have a great community here, with lots of experience of arthritis who I know will make you very welcome and help in any way they can.

    I am very sorry to hear about your diagnosis of Psoriatic arthritis at 29 and the huge impact it had on your life suddenly almost out of the blue. There are quite a few members on here who have the same type of arthritis as you, although many of your symptoms will be very similar to those of other types, so you will get lots of tips and support.

    Your story certainly rings a bell with me as I woke up one day (to be fair I had had slightly sore knees in the weeks leading up to this) ‘stuck’. Luckily for me I had already had my children so did not need to delay my treatment.

    I am very glad to hear you have finally started on some medication to help and its working! How wonderful to hear you have a gorgeous daughter Rosie and are even back playing golf. 6 under par?! Very impressive! Your story is such a positive one, which I hope will encourage those who are recently diagnosed or awaiting diagnosis.

    Thank you for posting.

    Best wishes

    Ellen.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, I began my PsA back in 1997 when I was 37 but it went unrecognised as that for five years because it began in the wrong joint, my skin was OK and my then GP was an ignoramus. By the time I began sulphasalazine in 2002 the damage was done and OA was diagnosed in 2011. I am currently on injected meth and humira but that is changing to imraldi, a biosimilar. I assume that will have the same effect in controlling disease activity but that is all it does. The meds for the PsA do not affect the OA so life, if I choose to think of it in this way, is pretty grim. I choose to think differently.

    I am thankful that by the time I was sixteen the science of genetics was underway and it was being realised why stuff such as asthma, eczema and RA ran in families. I was born with eczema and developed asthma aged seven, this was in the early sixties so no steroid creams and inhalers there to help! :lol: My Ma passed on those, the psoriasis side of things came from Pa (he had tiny patches in later life) but they were the lucky generation who dodged the genetic bullets they happily fired into me. I decided aged sixteen not to have children, a decision I have never regretted.

    One of the blessings of the modern age is that those who inherit this junk, or who start simply because their body decides it's time, now have access to the meds to reduce symptoms and control the immune response. My childhood was terrifying, nobody knew what triggered the skin to split and bleed or the lungs to close down but it's all very different now.

    Phil Mickelson has PsA but being a wealthy Yank his first med was humira: no faffing with piddly DMARDs for him. I have a friend who is similar to Mr M, he is living life to the full on six sulph tablets per day and has done for over ten years, no spread and no increase in disease activity; talk about PsA lite :wink: I don't understand his experience, he is mystified by mine. Arthritis is a case of mind over matter, I do mind but that doesn't matter. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Hi Matt. That was a bad start to your story but it gets better as it goes along, doesn't it.? I always feel for sportspeople who develop arthritis. I was no great shakes at sport though I loved and still love cricket and I used to walk or run everywhere. But my husband used to play a lot of sport, my elder son played cricket to a high level (and other sports to a low level :wink: and his son is now baseball and soccer crazy. (They live in USA.) So I understand how devastating it would be to lose something which has given your life so much meaning.

    My RA started when I was 15. Modern DMARDS weren't on offer back then so I'd just to muddle through on anti-inflammatories mostly. I think we all just do what we have to do and hope for the best. I consider that, many years
    on, I've had a good life and I hope you do too. The cimzia sounds to have been great for you and long may that continue. Carry on golfing as long as you can. And keep on enjoying little Rosie. There's always ways to have fun with kids. I did with mine and now I do with my grandsons. Right now I'm in California on a visit, sitting by the pool with my beer and fixing to watch lots of baseball :D I may be very arthritic but I can still enjoy life.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • SamCazza
    SamCazza Member Posts: 2
    edited 30. Nov -1, 00:00
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    Hi Matt,

    First post for me but, there were some similarities in your story and like you I would be keen for any tips!

    I am 33 and have just been diagnosed with PSA. I had written off a number of my symptoms as other things and hadn’t quite realised how bad it had got. My feet and back hurt so much in the morning I struggled to walk and would hobble from my car to the office in the morning. I had written this off as sciatica as I’d always had a bad back. I had a stiff neck... this was a result of years of playing rugby and one of those things. The dry skin on my legs and feet was eczema. I was always knackered... well I started early and have just had my third child, baby Emily, who combined with Ben 6 and Jake 3 are enough to wear anyone out! But when my fingers suddenly became really swollen and I couldn’t get my wedding ring on I couldn’t explain this (thankfully) and went to my GP. He referred me to a Rheumatologist with suspected Arthritis... I thought he was just being cautious, and that it couldn’t be Arthritis as I'm too young. My Rheumatologist was great and when I told him I had had psoriasis as a child he knew exactly what was going on and explained PSA to me.

    I had a steroid injection and was told to return in two weeks to discuss treatment options, he wanted me to read up on methotrexate to understand what I was getting into. The steroid injection was like a magic wand and I jumped out of bed the next day pain free... for the first time in 18 months... which is when I realised just how bad I had got. Although I have been getting really bad cramp in ankles in the morning, I wonder if its from where I have started walking properly again?

    I start my first round of methotrexate on Saturday night, I am hoping having Sunday to get over any potential side effects will help. I am also going to have a few beers with my friends tomorrow as although I don’t drink that often, every couple of weeks, when I do I like to have more than a couple of pints so this might take a bit of getting used to! I suppose I am still trying to get my head around what it all means short and long term - what I can and can’t do in terms of day to day life (diet, exercise, being a Dad/Husband, work). One thing I am interested in is how stress levels effect this, as the last year has been pretty full on for me and I wonder if this has caused my symptoms to worsen?

    Sorry for the long post, its good to get it off my chest. Any tips or advice would be really welcome!
  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi SamCazza and welcome to our forum.

    Sorry to read that you are suffering with Psoriatic Artheritis (PSA).
    Below are 2 links. One is for the Living with Artheritis website and the other one is for psoriatic artheritis.

    https://www.arthritiscare.org.uk/living-with-arthritis

    https://www.arthritiscare.org.uk/do-i-have-arthritis/publications/297-psoriatic-arthritis

    Looking forward to you replying back. Amanda x
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Hi Sam and welcome from me too..

    I'm much further down the arthritic line than you but I do know a bit about combining kids with arthritis and about methotrexate.I could bore you with stuff about both but, as I'm currently visiting one of my sons in California, I'll save that for another time - when sun and beer and trail mix don't intervene :wink: For now, I'll just say that, if you want to play with your kids you'll find ways. Methotrexate doesn't necessarily have any side effects and, though you really need to stay off alcohol for about 2-3 months to ensure your liver is tolerating the meth well, usually it's then OK to drink in moderation.

    Talking of which..... :wink: .
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • SamCazza
    SamCazza Member Posts: 2
    edited 30. Nov -1, 00:00
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    Thanks both, I’ve been really impressed by https://www.arthritiscare.org.uk and the material it contains. I’ve started on methotrexate and feeling OK so far, but its early days, so fingers crossed that when the steroid injection wears off and the dose increases it stays the same.

    Stickywicket its good to hear a few beers are achievable a bit later down the line... having a few months off is probably going to be a good thing, and there’s a big difference between indefinite and a few months! Enjoy California... the weather sounds a lot better than not so sunny South London!

    Cheers, Sam