Hello apologies for the long intro but thank you.

Joel
Joel Member Posts: 11
edited 28. Nov 2018, 05:40 in Say Hello Archive
Hello,

Just thought i would introduce myself as i have been lurking around the forum for a while and not registered.

I am 45 and work full time, my history is I started suffering psoriasis in my early 20's, this quickly turned to joint pain mainly in the tendons in the bottom of my feet. I was told by my GP that this could be the early signs of PsA. Back in those days 20+ years ago i didn't really think about it much and just got on with it (you know how it is when you are young). Fast forward on to my mid 30's and the tendon pain started to become stiffness and more persistent joint pain but only in the mornings.

Its funny how these things creep up on you i didn't really notice the pain and stiffness would take longer and longer to pass each morning.

By 40 (i don't know if this will make sense to people or not) but when i got up in the morning it started to feel like if i moved to quick something would happen (break, snap, pain not sure what but something...). I went to see my GP and got put on Naproxen (along with various steroid lotions and potions to manage the skin part of the psoriasis) but it didn't really help so I never went back and just carried on putting up with it.

So sorry for the long winded intro and background but now to more recent times and the reason for all the waffle above.

This last year I have felt things really start to degenerate much more rapidly, its the little things like I can't lift a full kettle of water now without pain, shaking hands with people hurts for a long time after. I was making meatballs a few weeks ago and I was struggling to form the mince in to the ball shapes. Like always I just started to create work around's to get on with it... Two small pans for cooking pasta that I can lift rather than one big pan for instance.

The pain is now in both feet, ankles, knees, lower back wrists and fingers... I have two young children and am currently going through a divorce (which in itself is quite isolating) so things have been quite a struggle for me in many ways.

Then I saw a verses arthritis advert in a program I was watching on all4. It was the one with the old lady and skimming stones on the beach and it really hit a cord with me as I look at my boys (2 1/2 and 4 1/2 Y/o) and i saw that it was me. I used to run and participate now I watch and limit what i do with them and it made me realise this isn't a work around I should have to make.

So I went to see my GP (hadn't been in ages maybe a year or so). He examined my joints and was concerned at how bad they have got and thinks it might be more than just PsA; so has referred me to a rheumatologist.

I have my appointment on Monday I have to confess to being a bit scared about the outcome, on my dark days I sit there and think I am only 45 thats too young feel like my body is failing me and not enjoy my children in the way a dad should be able too.

But I guess I came on here to say thank you.

If i am honest with myself if I hadn't seen the advert I would have kept soldiering on until things got so bad I couldn't physically do stuff anymore (I am that stupid i am afraid)!
Despite being worried about what the appointment will find coming on to this forum from seeing the ads and reading about others experiences has helped me realise I need to do something now. The earlier the better and almost more importantly reading other peoples stories helps me see whatever the out-come there is life beyond the diagnosis and fingers crossed (no pun intended lol) it may improve my quality of life and win back some fun time with my kids.

So thank you. If you ever wanted to know are the adverts working well I am the proof they are reaching people. I don't know the outcome of my appointment and hope its good news. But what I do know is it will be better news now than it would be in 1 year, 2 years... a future time.

So hello, thank you and sorry for the long intro!

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hello Joel and welcome to the forums from the moderation team.

    No need to appologise for the long ‘hello’ it’s nice for us to know a bit about you :)

    I am so very pleased to read that the new advertising campaign has hit the right note for you and helped you to brave finding out what is actually going on. This is exactly what we were hoping for – arthritis does not only affect older people. Absolutely there is life after diagnosis too Someone once said on here that life may be different, but it’s still good.

    I am very glad you have been referred to Rheumatology and hope you will let us know how you get on this coming Monday.

    You are quite right starting on medication to help control the disease as soon as possible is really essential and if you’re lucky it might just help with the Psoriasis too. I expect you have already looked at this fact-sheet but just in-case:

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

    I do hope you manage to get things under control soon and look forward to seeing you posting.

    Best wishes

    Ellen.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I have psoriatic arthritis (PsA, which is an auto-immune kind of arthritis) and have been under the care of a rheumatologist since 2002. I don't understand why, when your GP mentioned that you could be in the early stages of PsA you were not referred to a rheumatologist then, that would have been the time to start the meds and get the disease under control.

    I began back in 1997 when I was 37 but my then GP had not one clue about inflammatory arthritis so far too many years passed before action was taken. Mine did not begin in the 'proper' fashion, i.e. in the smaller joints of the body, choosing instead to affect my left knee. In October 2003 my right knee joined in, and then it went elsewhere too. In 2011 osteoarthritis was diagnosed so some joints have one, some the other and others both.

    The VA adverts are very new and I am pleased that one has triggered you to take some action. Good luck, please let us know how you get on. DD
  • frogmorton
    frogmorton Member Posts: 28,075
    edited 30. Nov -1, 00:00
    Hello Joel and welcome to the forums from me too :D

    All I can say is better late than never as far as joining us lot and getting some 'real' help for your bones.

    No apologies needed for the long missive it's good for us to know a bit about you :)

    Best of luck on Monday My advice is to make succinct notes ready for your apt. Symptoms and effects on you and most of all take someone along for support.

    Do let us know how you get on

    Toni xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I hope I have this right: your appointment is tomorrow, yes? Good luck, please let us know how you get on. DD
  • Joel
    Joel Member Posts: 11
    edited 30. Nov -1, 00:00
    Hi all,

    Thank you for the welcome and advice! I will definitely update you when I get some results back.
    Although I have been having a good few days pain wise I am still worried about tomorrow and what the outcome will be, but i guess that is natural.
    I have started noting down how i feel on days and what I struggle with ready for the appointment. The week before and the early part of last week I was pretty bad then then not so bad yesterday and today. Do others seem to have this? Its not even predictable.

    Hi Dreamdaisy yes I agree, but I have to take some responsibility in that i guess. Like you it was back in the late 90's I first started to feel it. But it wasn't bad and didn't really affect me back then so i never pushed it. Its only really been in the last 2-3 years I have found myself adapting how I do things so I can still do them (if that makes any sense)!
    I guess was always more concerned with the skin psoriasis as that was the visible part!
    thanks

    Joel.
  • johnnyk32uk
    johnnyk32uk Member Posts: 41
    edited 30. Nov -1, 00:00
    Hi there,

    I certainly feel some similarities to my situation and I am struggling a lot just now as well, although I have been on lots of different treatments for my PA over the years.

    Hope all goes well on Monday and you get the right treatment and start to improve for both you and your family.

    Cheers
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Auto-immune arthritis is not predictable. Of the two I have I far prefer the OA because it is more honest and straightforward in what it does and how it does it: inflammation from that is localised whereas the inflammation associated with my PsA affects my whole body. My OA is mucking about at the moment thanks to the cold and damp, my PsA is possibly mucking about as I feel very under the weather but as I have spent part of the last week nursing a poorly spouse that isn't surprising.

    I have never had much in the way of psoriasis, it was the first bout of it on my soles and palms that led to the dropping of the medical penny. Mine began in my left knee and after five years of non-stop swelling it was 27" in circumference: in desperation at the back end of 2000 I went to see the physios at the local football club which referred me to orthopaedics who in turn referred me to rheumatology who then referred me back - that took the while it 2001. My then GP did nothing for five years apart from telling me it couldn't be drained and it would sort itself out. Up until her every GP I had experienced was good so I trusted her. Idiot. DD
  • Joel
    Joel Member Posts: 11
    edited 30. Nov -1, 00:00
    Hi All,

    Well update on my Rheumatologists appointment yesterday.

    I think all went ok but it left me with a couple of questions.
    So got there had a conversation about what I can do on good days and bad days. How I cope with the dermatological side of my psoriasis which he felt wasn't being well controlled (although this is mainly due to me having to take a break from the use of topical steroid creams as I have been on those in the "super potent" category for an extended period).
    Then he carried out a joint exam, x-ray (feet , chest and hands), blood tests etc
    The outcome was yes he was very certain about PsA due to the location, history and examination. But he did have concerns that this may not be the only type I am suffering from (apparently it is not unusual for PsA suffers to develop other types of arthritis). He said that the blood tests and x-ray results should help in the diagnosis.
    The upshot was I had an immediate injection of steroids in my behind and he wants me to start immediately on Methotrexate 15mg once a week and folic acid once a week two days after taking the methotrexate.
    I need to go back for bloods every two weeks for the next two months and then back in Jan where he will review the blood results and x-rays with me.
    Feeling a bit better this morning from the injection.. not 100% the pain is still there but the stiffness seems less (if that makes any sense).

    So my questions if anyone can help..
    I had the steroid injection (in my butt) and it burnt like hell when they injected me and today I have pain down my leg and the back of my right knee. .. is this normal has anyone had this before? Having had sciatica previously years ago it feels the same and I am concerned the injection has hit my sciatic nerve (i am hoping people will say "no this is normal").
    I had a thumping headache about an hour after the injection also.

    The other question is a bit more general Methotrexate, I have heard a lot of bad stories about this drug and side effects so to think about what day you want to take your once a week dose as when you first start on it it can cause nausea, fatigue and hairloss among others. I work compressed hours (42 hours in 3 1/2 days). then my remaining days is time I spend with my children. Did anyone suffer these side affects when you first started on it and how do you balance it? (sorry more of a life question than about the actual drug itself).
    I haven't taken my first dose yet as I was just a bot nervous about how bad or common these unwanted things are, then remembered I know a community of people who might have personal experience to help me decide what day is best... and here i am again!

    Thank you all for the advice it was especially useful taking the notes with me, this really helped as I was on a good day when i visited and if it hadn't been for the notes I would probably have down played it like i always did with my GP. So I do feel the Rheumatologist got a good balance of an average period of time with the up and down days.

    Thanks
    Joel.
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    That sounds like a good appointment Joel.
    Re the meth bad stories - there are always people who have bad experiences with drugs, and there are also a lot of folk who will tell you scare stories based either on their experiences or on no or mis-information - in this case often making no distinction between its high dose use as a cancer drug and its much lower dose use for other conditions such as RA, psoriasis, Crohn's etc. It's been around for a long time and you will be monitored to pick up any problems.
    Although this is a sponsored article you might find it contains useful info [mods please say if you are not happy]
    https://www.chemistanddruggist.co.uk/content/methotrexate
    If nothing else the idea of someone called A. Pothecary being a pharmacist is amusing; nominative determinism in action yet again!
    Those in the meth gang will be able to give you specific advice regarding timing of doses etc, although it might be worth moving to the Living with Arthritis board now as more folk call in there so will see your queries.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh that all sounds very familiar! I never found the steroid injections into the behind of any use and certainly didn't develop any extra or new pain after: once we are in pain and diagnosed it is easy to attribute everything else that happens to us as being caused by the arthritis and its treatment. The usual bodily aches, pains, twinges etc. will keep happening because we are alive. Fun, innit?

    I had fortnightly bloods for years, I have been taking meth for years to and have very little trouble with it. I am sure that many more people than we know of do well on meth so don't need to find a forum. There are around ten million arthritics in the UK the majority of whom have OA: that number is not reflected on here, neither is the number affected with an auto-immune version. A friend of mine with PsA is wonderfully controlled on six sulph tablets per day and has been for years, I don't understand his experience of PsA and he doesn't get mine. Naturally he has no interest (or the time) to come on here to encourage others.

    When I was on tablet meth I developed a rash on my forearms, after years of eczema I wasn't bothered but my rheumatologist was and stopped it. Now, with the injected kind, the only issue I have is feeling extra tired every now and again. Despite the internet having a reputation for 100% honesty :wink: I have never researched my meds on the web, I am not a doc so do not know enough about the science, other people's supposedly 'true' horror stories are of no relevance to my experiences.

    I am rarely troubled by psoriasis, probably thanks to the meds. It was never a factorat the beginning which is why my diagnosis took so long but ultimately that changed nothing. You get used to functioning at a lower level than others - they don't have arthritis and that does make a difference. DD
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    I'm glad you had a good, thorough, appointment in which you could tell it like it is and make things easier for your rheumatologist.

    Steroid injections? I've not had the things you describe. I've always found them very useful albeit of a limited amount of time. If the sciatica-like pain doesn't clear soon it might be worth ringing your rheumatology helpline or GP for advice.

    As for the meth – it's been great for me for almost 20 years now. In the early months I recall a few hairs on the pillow and, in the washbasin after I'd washed it but no more. I do occasionally (but certainly not usually) get a day of fatigue either the day after taking it or the day after that. Nothing too difficult, though. I've never had nausea with it though, because of a dodgy stomach and a hiatus hernia, I ensure I take all pills with food.

    The folic acid, which you'll be prescribed with it, is to mitigate against any potential side effects. Some people take their meth at night, going to bed, to avoid nausea (or, at least, sleep through it) and some choose a day for it when they don't have to work the following day.

    Good luck and I hope it works for you as well as it does for me.

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