advice please!

nath2789 Member Posts: 3
edited 30. Aug 2011, 03:25 in Young people's community
hi all came across this forum whilst looking for some info on the web and seems to be just about the only place where im going to be able to get some helpful honest advice.
My name is Nathan I am 22yrs old and have had arthritis in my left knee since I was 11 after it initially flared up I suffered with it for approx 6-12months and after a lot of physio it settled down and I was told that I had had juvenile arthritis and had grown out of it.

However around 4yrs ago it flared up again out of the blue, then after four weeks off work seemed to settle down again for about a year however since then it has been getting progressively worse. My knee is constantly swollen and stiff I wake up every morning feeling like i have been on my feet for 12 hours, most days I have very little movement in my knee (at one point last year it was so swollen I couldnt move it all). I have tried what feels like every anti-inflammatory and pain killer under the sun all have either given me nasty side effects or havent worked at all. I see a rheumatologist every 6 monthes and every time just get fobbed off with "we'll see how you are in 6 monthes and go from there" I have had steroid injections into the knee 3 times, the first of which lasted roughly 6/7weeks the other two lasted less than a fortnight, I have also had the lovely experiance of having the fluid drained from my knee (just shy of 600ml of fluid drained) once again the swelling returned pretty sharpish.

At the moment i am completely fed up! I have a very physical job (I fix helicopters), a 3yr old son and a very hectic lifestyle I am up at 5:30 every morning and usually dont sit down to relax again until at least 7/7:30 by which time I am absolutely knackered, on top of this I am woken up nearly every night by some form of pain or stiffness in my knee. And I find the more run down I am the worse my knee gets so its a viscious circle. I have tried explaining this to both my GP and the specialist neither seem to take any notice, my GP just wants to sign me off work all the time and the specialist just nods and writes it down. I have had a lot of time off work with my knee from the odd day or two to being signed off for 4 weeks, when I have been off for these long periods my knee does seem to get a litte better but I find I get very, very down and very frustrated as I am sat at home all day by myself so have always been very eager to get back to work and have perhaps overdone it a little.

I am now considering requesting a transfer to some sort of desk job something that I am really not to keen to do (mainly because I didn't think I would even have to consider it until i was old and grey! lol) however my specialist has mentioned me trying sulphaslazine, I read the leaflet he gave me and didn't think it sounded too bad however after looking it up on he internet and reading no end of stories about people suffering with side effects which would stop me from working or suffering from side effects for 6monthes I am very dubious, if anyone who has taken this before could please give me some advice on it I would be very grateful! I dont really like the idea of having to possibly take 6 tablets a day for ever more but I have just about had enough now and if there is something that I can do to help even a little I am willing to give it a go!

sorry for the essay guys but I thought I needed to completely explain my situation
nath x


  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    Hi Nath..

    Welcome to the forum..
    I am 32 and get so annoyed with my OA In my knees.. very frustrating..
    In regards to your job do you have occupational health you can be reffered to for support??If not maybe speak to your manager or supervisor about the situation see if you can work something out together..
    Regarding sleeping at night could you not speak to GP about this..I take amitriptyline which helps relax your muscles at night and helps with pain..Helps me alot..
    Regarding tablets i take 16 a day thats without any added paracetamol lol..If it helps with my pain i do not worry so much now..i'd rather less pain than more..
    I am sure someone will be along soon to answer your question about sulphazine a few have mentioned it before..
    Take care
  • Ankyspond
    Ankyspond Member Posts: 626
    edited 30. Nov -1, 00:00
    Hello and welcome!

    Stop right there, although the Internet is a fantastic place for advice and information (I teach ICT so its my job) but it can also scare the hell out of you when looking at the meds. The best thing to do is what you have done now and thats ask on here as there is always someone who has been on whatever drug you want to know about. I have been on it for six months but it didn't ease anything for me but I have Ankylosing Spondilitis and each type of Arthritis takes to each different drug. I am now on Anti TNT and Methotrexate as well as Naproxen and Co-Codomol, its about getting the right medication for you and it may take a while with trial and error on different stuff but you will get there. I had no major effects on any of the meds really and you are monitored very closely while on them so if any probelms they will take you off. Its a bit of a balancing act really and you have to consider your quality of life, I am 43 and was diagnosed four years ago and still feel angry, frusterated, sad and peeved off that I have this awful disease but you have to try and deal with it the best you can. If you get the meds right you may be able to continue to work, I teach three days a week and do most things although sometimes have pain after but manage to do it.

    I really hope you feel better soon and when you are down look at your childs beautiful face and that will give you the push you need to keep going. Keep posting and I am sure there will be others along to give advice as well. xx
    AS Sufferer
    Live, love and enjoy life, live each day as though it's your last!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    This sounds like a classic inflammatory arthritis to me, I ended up with a left knee that was 27 inches round and required surgery, this after five years of constant swelling. I began sulpha in January 2002, the only initial trouble I had was bruising which eventually disappeared and now, nine years on, tinnitus but that doesn't bother me as it doesn't hurt. I too have had my knees and ankles drained, steroids injected and 'enjoyed' maybe three days of benefit before the resumption of the swelling etc so I do understand how frustrating this all is.

    Have you ever had any blood tests to measure your inflammation markers and rheumatoid factor? The latter does not have to yield a positive figure as there are sero-negative versions of this dross (I have one of those, psoriatic arthritis). The rheumatologist should not be fobbing you off, especially considering your history, this is causing you serious trouble now and it needs sorting. Please don't check the web for meds info, talk to us as we know our stuff. Just because side effects are listed does not guarantee that they will materialise. I am on a number of meds for it all now and am rarely troubled by anything. Keep in touch and let us know how you get on, please. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • nath2789
    nath2789 Member Posts: 3
    edited 30. Nov -1, 00:00
    thanks everyone for the quick replies! i must say it is very nice to finally find some people close to my own age who have gone through the same as me, people seem to find it very difficult to understand what you go through unless they have been there themselves.

    with regads to blood tests i have them done every 12monthes or so and the results always come "normal", after i was told that my last results were normal i insisted on more investigation being done as i was wandering if i had some injury or damage within the joint and as i hadn't had an x-ray since i was 11 there was no way of knowing. managed to get an mri at the beginning of this year and when my rheum. saw it he said (and i quote) "hmmm theres a lot of arthritis in there".

    I am off work at the moment again! going to see my GP today and trying to get an app. to see rheum. a.s.a.p as well hopefully will get something sorted...
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Alas, I am not close to your age, I am an old hag of 52! :smile: I began this dross at 37 so I am fifteen years in. So, yon chappie says 'there's a lot of arthritis' but doesn't help further? Twerp. I think that you need to ascertain what sort of arthritis, as I say it sounds inflammatory to me, but OA could be a factor too, especially if your joint has been damaged by the inflammation. I suspect you will have to stand your ground and fight your corner, young Nath, it should not be that way but sometimes it is. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben