Hullo

Mozzer
Mozzer Member Posts: 10
edited 31. May 2015, 13:39 in Say Hello Archive
Hullo all

About a year ago I went to meet my wife at the end of her staff night out and on the walk home I began to get quite severe pain in my left leg. I assumed it was connected to my ankle...I've broken it twice and for about 20 years it has given me trouble; swelling up, stiff, lack of movement. It hadn't ever stopped me doing things and I was running 5k 3 or 4 times a week, playing football and generally being quite active. The pain this time was quite different as there was a sharp pain around my knee.

After a few weeks and with my ankle still very swollen I went to the doctors and was prescribed some anti-inflammatory drugs and was referred at a later appointment for an MRI scan. This took a period of some months and after the MRI I saw a consultant who said that my tendons were very weak but that physiotherapy would fix the issues. That made me feel good about things and I waited for my physio appointment.

One night while lying in the bath I noticed that my left knee was really swollen...to the extent that I got a bit of a fright looking at it! It wasn't particularly painful but I went to see the doctor again who told me it was just connected to my ankle problems and the swelling was just the joint protecting itself. This went on for over 6 months and at various times my knee would be so swollen up and sore that walking was uncomfortable but never impossible.

A few weeks ago a doctor finally actually looked at my knee and said it looked like bursitis. Another referral to another consultant which took place two days ago. At that appointment the consultant told me that I had some form of inflammatory arthritis in my hands (fingers?) and my left knee. He informed me that I would have to take some "...not trivial" drugs for a period of years. I was then sent for x-rays (hands, knee, chest), had blood taken and a referral for another MRI.

That phrase "...not trivial" in relation to the drugs has really frightened me. I was given leaflets about Methotrexate and Sulfasalazine.

My mind already has me in the worst case scenario...walking with sticks, in a wheelchair, heart and lung problems! I know that is silly because I don't even have a diagnosis yet but it's how I feel.

I guess I am wondering if anyone here can offer any insight. Is this form of arthritis always progressive? Is it definitely going to spread to other joints? Can the drugs halt the condition? What sort of effects will the drugs have? How much of an impact is arthritis going to have on my life...will I ever be able to run again? Will I be able to crawl with my little girl?

I hope this hasn't been too boring to read...I'm sorry if I have cluttered up the board with a lot of irrelevant nonsense.

Mozzer

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Welcome to Arthritis Care Forums Mozzer from the moderation team

    As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    Best wishes

    Mod JK
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. Like many new members of the arthritis gang you ask many questions to which there are no definitive answers and it must be worse if you are coming at this from a healthy background. I am fortunate in that good health has never featured in my life so cannot imagine the impact, for me it's just more of the same. :lol:

    It sounds as though you now have some form of auto-immune inflammatory arthritis: I don't know how much detail your consultant has given you but it's caused by your immune system going into overdrive leading to your body attacking itself, hence the swelling. Meth and sulph are the usual first line of attack, they come under the heading of disease-modifying-anti-rheumatic drugs (DMARDs) and they work by reducing the activity of the immune system, thus suppressing disease activity. If you are not used to taking medication then this must be a shock but I have a friend who has the same kind of auto-immune arthritis as myself and his is brilliantly controlled on just sulphasalazine alone - you may be fortunate enough to join his gang. I have seen over my years that the progress in quicker diagnosis leading to early medication leads to better results than I have experienced and that is a very good thing.

    All of us on here have the same labels but how we are affected and to what extent varies as much as us; arthritis has no respect for age or gender. There are many kinds of auto-immune arthritis and it may take some time for a truly accurate diagnosis to be made but the meds used to treat it are all the same. I don't agree that these are not trivial medications, surely any medication is a serious matter but we live in an age where we expect little pills in pretty colours to fix everything. It's a slightly different story for those with an auto-immune arthritis, the medication will reduce disease activity but the disease will still be there, lurking in the background. Any form of arthritis is degenerative and progressive but the meds can slow both processes and many who joined here in a panic have deserted because they are on the meds and living life as it can be lived. The majority on here are in a similar position to me, for whatever reason the meds are not living up to expectation (or it's all jut too late to make a difference) so it's left to us to encourage those who are new to it all. it ain't easy sometimes to do that! :wink:

    Don't be afraid to ask questions about then meds etc. but none of us have a crystal ball to predict your future. Your future will unfold as everyone else's does, one day at a time. You may have better days then some poorer days, the meds may be a struggle or they might be fine (I have very little trouble with mine) and you may have to change them every now and again. I wish you well. DD
  • stickywicket
    stickywicket Member Posts: 27,209
    edited 30. Nov -1, 00:00
    Helo Mozzer and welcome from me too. Just for the record it wasn't at all boring and you have not cluttered up the board at all. There's plenty of space left :wink:

    It sounds as if your latest consultant was a rheumatologist. It also sounds as if the original ankle problems, which arose due to the breaks, might be totally irrelevant to what happened next. It's relatively common for osteoarthritis (OA) to set in at the site of a former break. However, inflammatory arthritis is a different beast and I doubt your earlier ankle problems had anything to do with it other than making the pain worse.

    Blood tests are usually the first port of call when an inflammatory arthritis is suspected. You seem to have only recently had blood taken but the consultant seems confident that that's what you now have. Please don't be scared of the meds. I know they look scary on paper but they do a vital job. Manufacturers have, by law, to list every possible side-effect but most of these will have happened to people with more problems than just arthritis who are on multiple meds. Of course sometimes they do happen anyway but you will be well-monitored with regular blood tests while on them.

    Try not to let your imagination run away with you. You are imagining worst case scenarios but that won't necessarily happen though, if you don't take the meds, it's far more likely to.

    Most forms of inflammatory arthritis are progressive but the rate of progress varies with each individual. If you take the meds, exercise sensibly (not too little: not too much: not high impact) and eat healthily your chances of a slower progress will be increased. And try not to stress about it. Arthritis loves stress and feeds off it. Your consultant is being very thorough. That will help enormously.
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    You've got a lot to get your head round and it's not surprising that you're worried about the future and wondering about worst case scenarios. However I hope that after a while you'll find a less scary outlook. There is life with(not after unfortunately as it doesn't quite work like that!) and it can be good - different yes, and needing mental and physical effort almost certainly - but still good.Interestingly, many of us have found that our condition means that we take pleasure in the small things in life and live 'in the moment' more, which can bring its own rewards. Have a look around the forum and see it's not all doom and gloom - partly due to the quirky sense of humour that arthritis seems to inspire.
    And no, it wasn't a boring post.
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Hello there, and welcome. Please don`t apologise for your post - most of in your shoes have done the same : we all want answers to all our questions.

    I haven`t really much to add to what others have said, but I think it`s quite normal for a usually healthy person to imagine worst-case scenarios after receiving a diagnosis such as yours - I certainly did, as I was a very active person too.

    The drugs, whether we like them or not, are necessary to keep the inflammation under some sort of control and stop the joints from being destroyed. It`s a sort of `Hobson`s Choice,` if you like. They all have a list of possible side effects as long as your arm, but the thing to remember is these are POSSIBLE, not probable. I was on both the drugs you mention, without any dastardly effects, though I did have to stop both as they simply didn`t work for me.

    I hope you can begin to feel less anxious, but please do post if you have any more questions, and let us know how you are doing.
  • Mozzer
    Mozzer Member Posts: 10
    edited 30. Nov -1, 00:00
    Many thanks to those of you who have replied to my post.

    I am very grateful to you for your thoughtful responses and your kindness.

    Thank you.

    Mozzer
  • frogmorton
    frogmorton Member Posts: 28,179
    edited 30. Nov -1, 00:00
    Hello Mozzer

    Lovely to meet you and welcome you to the forums from me too :)

    I am sorry that you've had to find us, but you really have found the right place here.

    Love

    Toni x
  • barbara12
    barbara12 Member Posts: 21,279
    edited 30. Nov -1, 00:00
    Hello Mozzer
    Welcome to the forum, and you weren't talking nonsense, we are all here to help one another..it is scary when first diagnosed ..but if you read through the forum you will find many people still working and getting on fine with there meds...has you will know they have to tell you all the bad bits just in case :shock: I do wish you well, try and stay positive it will help ...there were times when these meds weren't available so in someways we are lucky to have them...hope to see your name around the forum...

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