knee problems

hi everybody .. just a quickie ..

my knee swells up alot these days ... this time its really bad ,, " worse its ever been " i can never work it out ,,why or when its going to happen .. i did believe at first it was when i was over doing it ,, but this time ive hardly done anything the last few days and my knee is swollen like ive never seen before ... so that theory has been put to bed ..

anyone got any advice ,, what meds to take ? does resting just make it worse ? or do i need to keep moving it ? why does it swell up in the first place .. i take iburofen but that doesnt seem to be working ... ive taken iburofen for years now ,, im sure that cant be doing me any good .. i was on mtx ,, but been taken off it ... all im left with is the good old iburofen again :( think another trip to the docs is required ...

thanks andy xx

22 Replies

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  • oops ! ive just blogged .. when its more a question really ..... sorry :)

  • Andy you've been around here for a few weeks now but hardly said a word about yourself in terms of how long you've had RA and why you've come off the MTX. It's hard to advise unless you put us in the picture a bit more. Inflammation is the enemy with RA and ibuprofen is fine but really you need something stronger to tackle the inflammation in your knee. Is it RA or OA do you know? I ask because several people I know have OA in one knee and have steroid injections into the knee itself every six months or so which they say helps a lot. Tilda x

  • Hi Andy

    Well i now have 2 replacement knees so none of this is a problem for me now, but i am still very used to dealing with troublesome swollen joints!

    I find, ice is the best with swelling, so ice pack if you have one, if not peas (just dont eat them after you have re-freezed them!). then ibruofen gel helps if rubbed in. As to why? well im no doctor, just lots of personal experiance....i would suggest your anti inflammatory isn't strong enough, go see the doc but im thinking volterol, or something along those lines!, Why was your mxt stopped? that wont help with immediate effect, that drug comes from a group of drugs to control the underlying disease, of which there are many others but a rhumy would need to prescribe that? Your GP could do some blood tests to see how active the arthritis is? (dont know if you've already had these?). Ultimately if your knee problems continue the rhumy could 'drain' them and inject steroids into the actual joint space.

    Don't know if any of this helps?

    I'm sending you knee soothing vibes;-)

    Ella x

  • Hi Andy,

    I'm the biggest knee bore here 'cos mine got damaged so quickly & of course I wish I acted differently & more quickly to prevent it happening. The left one swelled up back in January 2011 but went down after 6 weeks. Then in December 2011 it swelled again and it has never gone down since. I went to the GP after Xmas and an appointment was made with an Orthopaedic surgeon for the end of February. While I was waiting I absolutely worked my socks off teaching full time & commuting quite a distance so ignored the pain. In retrospect pushing on like that was probably a big mistake.

    To cut a long story short, after an initial misdiagnosis it eventually turned out to be inflammatory arthritis which obviously you know you have already. But as far as I know my other joints don't seem to have been so badly affected as my hugely swollen knees which is why I think you should be very careful. I went through weeks of elevating them, bags of frozen peas, NSAIDs etc. but to no avail so I'd recommend that you make that trip to the doc ASAP, get the knees x-rayed and if it is the RA make sure that the Rheumy gets busy deciding what best to do for you very quickly.

    (I'm not knocking rest, elevation, ice etc. - hopefully those things do turn out to be all that is required.)

    Christina

  • hi tilda... hi ella ...

    ella .... id try the frozen peas if i had any .. but i dont keep them .. the horrible things " like bullets " :) .. i will get myself a ice pack ..

    where do i start ,,tilda .. ??? ive been struggling for many years now with the aches n pains .. ive only got myself to blame, i always thought it would just go away .. Big mistake ... i should of pushed it more with the docs .. id maybe have some answers now ..

    over the years...

    i was first told it could be RA... " the doc " the same doc who said i was to young to have arthritis.. finally refered to a rheumy .. who said its not RA its PA ..

    my rheumy wanted me to start on MTX ... i did turn it down at first ,,, again silly me .. another few years wasted .. but this year i did start it ... at first the mtx worked well even my blood results showed great signs .. i felt better then i had in years .. 4 months on my rheumy wasnt happy with the results .. so he took me off them .. he s now saying because the mtx stopped working its more like to be AS ive got ... after taking me off mtx ,, he started me on naproxen .. after a week i was back on the phone to the rheumy nurse to say this naproxen doesnt do anything .. only med i find works well is iburofen .. so my rheumy said keep taking them ,, whilst i see if i can put you down for the anti tnf .. assessment ... now i know a friend who was turned down for this ,, so i dont hold much hope .. has i know hes in a worse state then me .. sorry if this doesnt make any sense ,, its probadly because alot of it confuses me im still puzzled ,, all i know ive been diagonised with 3 different types of arthritis ,, 7 years on still not sure and still taking iburofen ... maybe this is why ive not said much tilda ,, im not sure me sen really :)

    andy ..xx

  • Hi again Andy - yes that makes a lot more sense to me now - it's always good to have some background with people on this site because a) we forget each others personal stories re RA and b) it's impossible to support or advise without this.

    Poor you - I hate these tales of people not getting a proper diagnosis for years. All i can advise is for you to gem up as much as possible on all inflammatory arthritis. You look young in your pic so it's extra important to push these people hard. I just don't understand why your rheumy took you off a drug that seemed to be working well for you - MTX is a good drug to take with the anti-tnf and you will be less likely to be eligible if you're not on it already so please phone up and say you'd like to go back on it because you felt in less pain. If there aren't contraindications for your liver and white blood cells then it seems wrong to have pulled you off it whatever type of inflammatory arthritis they decide on. How did he know it wasn't working after only 4 months anyway and if he had good reason (ie clinical signs) then he should have explained better. Please push them all very hard as it's your life, your body and your health that are at stake here not theirs! Tilda xx

  • hi again tilda

    ive seen this alot on another site for AS .. it seems the diagnosis for AS can be abit tricky ... so im starting to believe my rheumy has finally got to the bottom of it .. but then after having been diagonised with 3 different types in the last 5 years ,, you never know .. :)

    i am starting to push them alot more now,, and im also learning more n more about inflammatory arthritis... the last few years have been abit hard and ive not really focused on whats been happening to my body ive just ignored it ,, you could say the arthritis was the last thing on my mind ..

    im not sure about this i will need to check ... but i think my rheumy ,,believes once youve tried the mtx and its shown , that it makes no improvments .. that scores a few points for the tnf ..

    i will find out ..

    andy ..xx

  • Dear Andy

    It does sound like you've been around the houses quite a bit. What is clear is until you have a firm diagnosis it is a tricky query to answer. However, regardless of it being RA, PA or AS...managing it with just anti-inflammatories goes against every NICE guideline on the treatment of inflammatory arthritis. Do visit the NICE website if you wish to read more about guidelines nice.org.uk/

    or a summary of the guidelines for RA can be found at nras.org.uk/about_rheumatoi...

    What we have found in the past is when patients start showing their rheuamtology teams that they are informed and wise to what their pathway of care should look like things do seem to speed up a little. I hope this will be the case for you.

    If you need any further information about RA do call the NRAS Freephone helpline on 0800 298 7650

  • thanks clucky

    i can really see how increasing your knowledge about your own condition can help..

    you get 20 mins if your lucky with your rheumatologist.. then you dont see him again for 6 months .. in that 20 mins you need to be switched on ,, understand what on earth he/she is talking about otherwise like me you walk out more confused then you were before and by the following day youve now found a million n one questions you wished youd ask ..

    thanks again

    andy .x

  • thanks christina

    i guess exercise class is out this week for me then .. sometimes its best to listen to your body . i think ..

    ive made an appointment to see my gp next week ,, ..... guess what ?? it to was a name ive never heard of .. im seeing a new doc .. i hope i have the same the luck has you and found one that seems interested ... :)

    andy xx

  • Yeah, whatever type of inflammatory arthritis you have, your mobility could be compromised if it is attacking the knee joints. It might be an idea to tell the GP that this is of concern to you and that you want to investigate whether the swelling is due to the inflammatory arthritis straight away as opposed to in a few months!

    At the moment my knees are hot & swollen & I have a slightly raised temperature. I know that wasted quads make the problem worse because they are the muscles that support the knee joint but I'm assuming that anything more than gentle exercise is not a good idea just now but I don't really know.

    I've told my Rheumy that I would like to know what sort of inflammatory arthritis I have. He thinks it doesn't matter because the treatment is the same for most types. But is it? I think some Rheumys reckon that some DMARDs are better for RA than PA and vice versa. I too could have RA, or PA or AS & I'm waiting for the result of a test for Lyme Disease which can cause arthritis in the later stages.

    You sound to me as if you are someone who now wants to get their head around their disease (as much as any of us can!). And it seems as if you've been a bit abandoned drug-wise, like the doctors just sort of gave up trying to find the right one for you. Hope the GP does seem interested & can get the wheels in motion to sort you out. Let us know.

  • hi christine our stories sound so similar .. my rheumy also believes it doesnt really matter which type of inflammatory arthritis it is , because all the treatments are the same ,, but then after my little time on mtx ,, he takes me off it because now he believes i have AS ,, so he says mtx will not work for AS .. this contradicts ,, all the treatments are the same statement ..

    hope your temps gone down along with your knee swelling ..

    andy x

  • Hi again Andy. Lots of good suggestions and advice for you here it seems - particularly the one to contact the NRAS helpline. I understand what you are saying about the MTX failing re anti-tnf but I'm also pretty sure you need to be on MTX to be able to take most anti TNFs so that doesn't sound a very good reason for taking you off it and leaving you untreated for months to me? My friend's son has suspect AS and has been referred for an MRI scan - has this been suggested for you i wonder and have you had your knee x-rayed yet? Tilda x

  • flippin eeck !!! give me chance tilda ,, no not yet , but im seeing the doc on tuesday .. i will add this to my ever increasing list of questions ..

    your bang on ,, right .. plenty of good advice and suggestions im getting ,, id be lost without this site ... this is the best move ive done ,, joined up and started to talk about it ...

    yea !! ive been for the mri scan ,, dont get me going on that one ,, after 3 visits ,, i finally get the scan ... the results n report all came back fine with no problems .. it was only down to my rheumy after checking the images himself for a second time he noticed some damage to my lower back ..

    andy ..x

  • Hee hee I am very impatient and a naughty RAer Andy - I get too frustrated for others as well as for myself - sorry it's just how I am! Ask your GP for an x-ray of your knee and a steroid injection perhaps? But photograph your swollen knee properly first if you have a steroid injection so that if it goes down at your next rheumy visit then you can show him what you mean. Yes it's time to kick arse Andy - nothing ventured nothing gained show 'em you mean business and know your stuff. Tilda xxx

  • My knees are always swollen but sometimes so bad that I can't bend them as they're so tight, it's usually when I'm going through a flare up but they generally go down themselves after a couple of days, I just carry on as normal as best I can, wrapping it in a bandage soaked in honey and lemon may help, meant to bring down the swelling.

  • i need to add a few more things to my shopping list ,, lydia

    so thats lemon , honey and frozen peas .. :)

  • right andy ive got rid of my problem twice before but having problems this time 1991 mine started got rid then 2005 got rid so here goes cos got it again.

    befor bed at night get some normal olive oil massage the knee cap and around it for 3 mins

    then 3inch below the knee cap where ya knee cap finishes massage with finger for 2 min

    then move to the ankle at the side massarge that you will aqlso feel when you do this nerves that will make your big toe feel funny.

    think this is called the peroneal nerve if it get trapped or irritated as it runs from the l4 area of the spine down through the knee it causes problems this i belive is due to the inflamation in your knee.

    always do this before you swing into bed.

    you dont say if the knee has been locking at all cos mine used to do this did me once in a car park could not go forward or back had to shake it.

    do you feel any pain in the ankle good if you dont.

    next if you do any quad exersises YOU MUST EXERSISE THE vmo NO GOOD WITHOUT IT THIS LITTLE THING ON THE INSIDE OF THE KNEE CAP PREVENT ALSO THE PATTELLA FROM MAL TRACKING WHICH IS ALSO A CAUSE OF PAIN.

    SEE YOU TUBE 30 DEG ANGLE FOOT OUTWARDS SAME EXERSISE AS QUADS FEATHER IS GOING TO ASK HER PHISIO ABOUT THIS COS THEY SOULD BLEEDING KNOW THIS.

    DO THIS EVERY NIGHT AND DONT FEEL AFRAID OF USING A BIT OF PRESSURE ON THE NERVE MASSAGE.

    i used to do this good as new for work next day them wore of by night time till i got it right.

    im not supprised they said your back cos if you are walking over a bit you are out of line

    when walking walk a bit slower and alway think heal toe heal toe on walking

    give me a week see how ya go on

    regards john.

    honest andy worked for me for years and got me walking round some distance i can tell you never thought it would come back again after 2005 stint.

  • oh forgot to mention andy

    when i had my mri knee specialist said medial wear no diferent to last time.

    BUT JUST BECAUSE YOU HAVE HAD AN MRI DOSNT MEAN THEIR IS NO PROBLEM SOMTIMES THEY GO IN THEIR AND FIND THEIR IS A MECHANICAL PROBLEM WITH IT thats what he said to me.

    you dont also say if you have any aches at the top of your bum where the si joint is this can be another sign of compensating for the knees

  • thanks john ... that really does sound interesting .. i will get back to you ,, im at the docs on tuesday ... so i hopefully will find out alot more ..

    if im honest ,, ive struggled for years with aches n pains and normally been fubbed off my docs and rheumy s ,,, but now ,, ive just about had enough ... been on here ive learned alot from others ... you need to push hard with your doc and rheumys to get answers or even treatment ..

    thanks again

    andy ...

  • you welcome andy i only found this worked for me from reading books in 1991 got me through the rest of me working life

    regards john

    trouble is i get knowhere with me docs and i belive your mri came out same as mine not much of a problem

  • yea my mri came back with not much problem ,, it was only down to my sharped eyed rheumy .. on a second look , that found something ,, that the mri team had missed .. he explained to me that the people who check ,, the mri s ,, are not always rheumys so sometimes do miss things .. so my advice would be for anyone never take the report back as the truth ,, get it double checked ...

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