im 23 and currently have a huge fluid filled knee. ive been diagnosed with RA since 16 so my relationship with a visible kneecap is distant. I am currently on my 4th biologic medicine, and all the positive mental attitude in the world, unfortunately, isnt making it work.
i was on humira from 2014 until about a year and a half ago when it stopped working. Since then i have been to hospital atleast every 2 weeks, to get it drained and have steroid injections, totalling definitely over 15 but ive stopped counting. Ive now been on tocilizumab for 3 months to no avail.
i know biologics are just a trial and error waiting game but my mental health is starting to suffer from being ok for a week after steroids and then the fluid comes back and i cant walk again.
Im looking for some advice, reassurance, help with anything that i could possibly do to find the light at the end of the tunnel.
has anyone been through similar with trialling biologics? has anyone gone private? do you think it would be worth it or is the path im on really the only option?
thankyou all for your time and help.
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Amylau
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you could ask for a second opinion - I really dont know what to suggest - some counselling to help with the fed upness ? I really feel for you which is absolutely no help but if you can afford it go private - I can send you lots of hugs and hope someof the drugs work soon for you xx
Going private might help you in having a longer consultation to discuss things, but will not help your treatment. Biologic drugs can only be provided via the NHS - and at £800 a pop you wouldn’t want to pay for them anyway!
Sorry, but currently i don’t think there’s a magic wand. Just trial and error, and your consultant’s experience. It sucks, especially at your age.
I hope that there's no delay in trying you on something else, as 3 months seems long enough! In the meantime, have you tried regular icing of your knee, and keeping it elevated as much as you can, to try to stop it filling up so fast?
So sorry to hear you are struggling and having a hard time. It's no fun I know. Not sure if other joints are troubling you as well. I was wondering if a course of oral steroids would help. Have they added a Dmard along with the biologic.
I know you're obviously having to rest your knee, and as already has been suggested keeping it elevated and an ice pack two or three times a day for about ten minutes.
The GP or nurse really should be helping you, do let them know how you are feeling, so they can get some support for you. I do hope the next drug will work for you, this trial and error business is hard work, I have been there and feel for you. Sending a big gentle hug and positive thoughts x
I’m surprised that at such a young age and with such a need you are not qualifying for a biological..... it might be worth ringing the NRAS helpline for support and advice.
I get fluid build up usually behind my knee now and again. I find resting and walking - yep, I know it really hurts but somehow it helps disperse it. Having had this since you were 16 it's a shame you haven't found something that works for you. We are all so different. Has a T K R not been mentioned or have you already had one ? Thinking of you xxxx
I have found that wearing a compression knee brace during the day greatly helps keep the fluid buildup on my knee at bay. It doesn’t eradicate it totally, but it really does seem to help when I use it daily.
Here’s an example of the one I use if you want to Google it:
Mueller-4-Way-Stretch-Knee-Support
The chronic buildup of fluid in my knee is related to cartilage erosion and damage as well as OA, and exacerbated by my seronegative RA. I also find that the other advice you’ve already been offered — ice, rest, elevation — are also critical to keeping the swelling reduced enough that I can function at this “new normal”.
I am sad you are so young and going through this. Hang in there.
Know how you feel have had my knees drained several times. Helps at first but now agony trying to walk hardly been out for weeks. Was on Actemra but didn’t help apart fro making me dizzy. Now on Rituximab hopefully start to work soon. Feel okay just can’t walk for pain. Hope you start to improve soon.x
My Rheumy has tried me on so many biologics over the past seven years, the ones that helped me the most have been Rhemicade infusion, it worked well for several years, not that I have ever been with zero pain but at least functional. I had a surgery and had to stop the meds and when I got back on, there was no difference with the inflammation. I am now on Orencia infusion, and it was the first med that after a couple of days I was able to close my hands, the first time I could remember, it was awesome! I again had to stop for a TKR and restarted the meds and it hasn't seemed to help as much, but I am sticking to it, because I believe it will kick in again! Also this time I am not having to stop for another TKR surgery, I will be able to stay on schedule with the biologic with this surgery. There has been evidence found that the Orencia has helped with a better recovery after surgery, because of suppressing the inflammation. Maybe you could give one of these biologics a try, if they are avaliable to you. Praying you find something that will give you relief😊and the route you need to go.
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