Nothing is working!

RD92

When I was about 16/17 my right knee started swelling up, I went through x-rays, MRI scans and multiple blood tests and still had no diagnosis! Eventually they decided on family history it was psoriatic arthritis in the one knee joint which I didn't fully agree with but hey! Anyway I've had steroid injections and the fluid drained off my knee more times than I can remember and it only seems to last 3-6 months before the swelling, fluid and pain returns!

They then tried various medications but all made me feel awful and didn't seem to be effective! They then decided to try something called a yttrium injection involving some radioactive stuff! It seemed like the best option for me and had good results for others. I had it done 3 months ago now and at first it seemed great! I could for the first time in years see that I had a bone in my knee. But then soon after it started to swell again and now it's worse than ever and looks like I am growing another knee out the side of my knee! I can't put pressure on it or walk properly and when I do the fluid feels like it's pushing everything inside my knee ways it isn't supposed to go! It's painful and sometimes feels like stabbing pains, aches and a burning sensation.

I'm only 20 and just feel lost now of what can be done next to help or help long term! Even though I've been dealing with it for 3/4 years now I feel like I'm totally out of control and though there's no confidence in the diagnosis i was given and I still don't fully know what it is! Finding it difficult to cope! Just wondered if anyone else has had a similar experience or can help?!
Rosie x

catt

Hi Rosie
What a pain! you must be feeling really fed up. Please don't despair, there are lots of other treatments available.
I am currently (under hospital supervision) self injecting a substance which inhibits the destructive process of my immune system. I'm not sure if I am allowed to name this product but I can tell you that it is fantastic. Luckily my treatment is available to me on the NHS I could not afford to pay for these very expensive injections.
Of course this cannot repair the damage done to my joints over the past 30+ years but has certainly made life much easier for me at present. Currently there are lots of different treatments available.
If you can look after yourself by learning how to gently exercise when you are able and rest when you need to then hopefully you will avoid lasting damage. There is the possibility that your 'condition' may burn itself out in time.
My big mistake was to force myself, in agony, to carry on as usual which made things worse.
I wish you well good luck catt

RD92

Thanks Catt! Think I was just having a bit of a wobble last night, I'm usually quite positive about it as I know there are people with worse! Think it's nice to be able to finally hear from other people who have similar 'conditions' as people can be kind and try to be understanding but dot fully understand and can also be quite patronising an ignorant! The worst one being 'Arthritis at your age, that's terrible' Not helpful people! Maybe because I've never been given a clear diagnosis I'm in denial sometimes? And I push myself to carry on as normal when I probably shouldn't!

I'm also glad to hear that there are other treatments available as when I first met my consultant I was told it was medication, methotrexate, steroid injections, yttrium or surgery and I've pretty much done all except surgery! Seeing my consultant again tomorrow so I'm hoping for a positive visit. Every time I start to feel as though I'm getting back to 'normal' and taking control it comes back with a vengeance so I hope there will be something that works for me!
Thanks for all the advice!

dreamdaisy

Hello, it's nice to meet you and you sound just like me - except I was 37 when my left knee began to swell. After five years someone in the medical field began to take me seriously (which was just as well because by then my knee was 27 inches in circumference, the swelling all above the knee cap) and that's when the surgeries and investigations began. It was decided that I had some form of inflammatory arthritis and I was put onto sulphasalazine. Over the years I've tried many drugs, had numerous drainings and steroid injections (all for three days worth of benefit )had two open synovectomies and one closed, had the radioactive stuff twice and had three anti TNF treatments too, but nothing has worked (well, not within my definition of 'work'). Come October 2006 my skin helpfully obliged with a bout od psoriasis and lo! my label was changed. I am now in my seventeenth year of this delight and have quite a few affected joints. I do wonder from time to time that if I had received the meds earlier I wouldn't be in the pickle I am now, but that's pointless and a waste of time.

There are many treatments out there but one of the saddest truths is this; what works like a dream for one person (reduced pain, better mobility) won't do a thing for another. You have to keep tryiing until you find the right med or combination of meds for you. Are you seeing a rheumatologist? And if not, why not? They are the people who prescribe the proper meds, GPS know a lot about a little but rheumos know a little about a lot. If you are not seeing one then please ask your GP to refer you ASAP. I wish you well. DD

RD92

Heya, it's nice to meet you too! Wow and I thought I'd had a nightmare sounds like you've been through it all! Thanks for the response I do really appreciate it and it makes me feel better knowing that there will be more treatments that I can try! I have seen/seeing a rheumatologist yep, and now I'm with someone who specialises in arthritis in young people so I'm hoping it'll start going in the right direction soon. Think another factor is that I haven't really had it fully explained to me and what I could/should be doing to try and help it which is why I've ended up on here as it is probably more effective than talking to them and I'm not sure if that's because they aren't fully sure themselves! Anyway I am back to the hospital tomorrow so fingers crossed there will be something new she can offer me!
Hope you're well
Rosie

dreamdaisy

An auto-immune arthritis is a law unto itself. It will do what it wants, when it wants and how it wants. The meds are designed to suppress the immune system to stop it firing up and attacking the body but that can come at some cost. I've been fairly lucky in that I don't suffer too much from side-effects (and never bother about them when starting a new med) but there again I don't get too much benefit from the drugs. Some trade-off.

My current drugs combo is the most successful in terms of wondrous blood results. My inflammatory markers have been below 5 since I began humira (supported by methotrexate, I inject both myself) and I still take the sulph as that helps to keep my skin clear. The pain, however, has not diminished because I have osteo-arthritis too. My mobility continues to decrease but, being an old bird, who cares if I can no longer get to night-clubs?

Everyone's arthritis is unique to them, we may share the same labels but one person's version is different to another's. Of the two I much prefer the OA because that doesn't lie - I know exactly where I am with that one, the PsA is more manifest in tiredness. I have had a very stressful few months and that is something that the PsA likes - arthritis feeds on stress. Breathing exercises and relaxation sessions can help to ease matters, I would like to try meditating but at the moment my brain is far too full with life's challenges.

If you would like more information on the meds etc then please ring the Helpline, they will be able to send out information leaflets on many aspects of dealing with your arthritis. Don't google too much - the interweb is not that reliable in its content. Stick with us, we'll see you right. DD