Hi everyone, I'm new here, this site looks great tho just what I've been looking for!
I'm 25, been diagnosed with RA for 6 years now in my knees and hands mostly and I've had Rituximab infusions as a last medication resort after years of pills that did nothing. It has done wonders for me, just wish they let me have it years ago before going on what seemed like a drugs trial!!
I have recently started getting sharp pain on the side of my knee rather than the usual place of my kneecap. The pain I'm getting feels very different to my normal knee pain, much more of a sharp pain and sometimes spreads down my leg. I'm not really sure if it's just more joint pain just in a different place or if it's something else? I have muscle wastage on my thighs and upper legs and I'm wondering if it's the ligaments or something that is related to this? My GP (unsurprisingly) is pretty useless when it comes to RA and my, I feel like I have to explain everything to them when they should be telling ME things! Do I need to see my GP or should I go to a physiotherapist? has anyone else had this sort of thing happen? Sorry this is so long, particularly for my first post!!
Thanks for reading
Emily
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EmLem89
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Hi Emlem, I am on Rituximab since April and responded extremely well to it. Inflammation and RA activity surpressed! (My problems are now that OA is on many places in varying degrees as I have had RA for 20 years but my knees were my biggest problem too.) Wish too that Rituximab was allowed sooner than the other meds I took, especially two biologics which did nothing much! Main thing is we are on it now and it has worked! I had Baker Cysts behind both knees restricting my movement, before Rituxi started to work, and swelling and over the knees and knee cap swelling .. my knees were blobs! had lost all definition .. and I too had some side of leg pain . . just one leg and the better one too ... shooting down the side, which I felt were ligaments, as there was a seizing and restrictive feeling which wasn't like anything else. I wondered if my stronger leg was over-compensating for the weaker side. I would ask your Rheumy to refer you to the hospital physio for specific exercises and an examination of the problem area you describe, as they can usually tell quite quickly what is is troubling you. Good luck ;-). Neonkitty
Neonkitty - Amazing thank you so much for your reply, it is SO nice to talk to people who have experienced the same or similar problems as me! Makes me feel much better about things and less alone in the world.
Sorry to hear about your knees, that sounds dreadful but yes like you say, hurrah for Rituximab
I have an appointment with my rheumy doc in June but not sure I can wait that long. Think I'll give them a ring in the morning.
You are most welcome EmLem! Here we have friends with very similar experiences and the support is good to have as friends and family are often stuck as to how to help. Yes I would phone your Rheumy/their Secretary tomorrow and ask if they can phone you back to discuss, or ask for a referral to Physio. The Rheumy may see you much sooner hopefully. Thank you for your kind thoughts. I am so grateful for what Rituximab has done . . thought my poor knees were going to be massive forever, and my other joints jangling all the time which has all calmed down thank goodness and although one knee is likely to need replacement eventually I can bend it and walk and not in much pain. Just my ankles have suffered as a knock on effect of them over compensating for the knees but I am working on that! Podiatry! (We have to work hard at getting ourselves sorted out bit I feel much better than I have in three years) Let us know how you get on. NK xx
It doesn't sound like RA pain. If it is spreading down the leg, it could be sciatica? Sometimes the pain from that can start at the knee and spread down to the ankle and foot. But it could be other things so best to get a diagnosis from a health professional.
Hi there. I got excited as soon as I saw the title of your post because I've been experiencing 'different knee pain' too. Not many people understand that getting a different pain from the one you're used to can be very disconcerting!
I have PsA and have fairly severe osteoarthritis in both knees as a result. PsA hit my knees bad from the start and the combo of very persistent inflammation and swelling, plus muscle wasting from the times I couldn't walk, caused OA very quickly.
So from my own experience, as you say you have muscle wasting, perhaps this new pain is OA damage? The knee joint, if not well supported by strong muscles, puts a huge pressure on the cartilage 'padding'.
I suppose the 'old' pain, the devil I know, was always a combination of PsA and OA for me because they came along pretty much together. In recent years though, thanks to Mtx and Humira, I've had very little pain despite the damage. But for the last month or so my knees, especially the right one, have been sore pretty much 24/7 and most type of movements hurt. And yes, the soreness is most obvious on the outside which is new.
I also find that my joint pain extends along my legs and arms, I think that's a PsA thing (it affects tendons) but there could be some RA linked reasons.
Do you have great difficulty walking? The classic 'test' of whether pain is primarily inflammatory or from osteoarthritis is whether it worsens with rest and improves with sustained movement such as walking (most likely inflammatory) or improves with rest and hurts more with movement (most likely OA).
Anyway, enough musing from me. You've had RA a long time, you're on infusions and something very different is happening. I think you need to see your rheumatologist and also to have regular physio for the muscle wasting. Reading between the lines, it sounds as if you've been left alone to get on with it rather too much ..... or is that my own bitter experience speaking!
Yes I have been left alone, the after care and general care really is pretty awful. My GP basically told me to just get on with life and I wasn't happy with this because of the pain I was in so I wrote a letter of complaint and was referred (after much difficulty!) to a rheum specialist in London. I think, from reading other peoples experiences this really needs addressing.
I am about to call my go and arrange an appointment, not sure what good it will do but we shall see...!
Well yeah, getting on with our lives is the way to go. That's why we need good care - in order to equip us to do just that. You know this of course!
I think if you've been out in the wilderness, unsure of what's happening to you, it might help to explain that to your rheumy. I would think that if your disease is severe enough to need infusions then you could reasonably expect appointments every 3 to 6 months. If there have been longer gaps than that it's worth flagging up that you quite understandably don't feel able to monitor your own disease and to know which changes are or are not significant clinically. Or some such story anyway, just lay it on the line!
Oh, and can't you get free physio? How can a person have muscle wasting and no NHS physio provision? Perhaps I've just been lucky but seems like you might just be missing out on some services that will magically appear if you push for them.
Went to the GP today, he's referred me to an NHS Physio and I've got a blood test too, so that's good news! Hopefully it'll get sorted thank you all for replying and taking interest!
Im quite a way from Edinburgh Cathie, I'm in South East Kent! But thank you for the offer! I have a good relationship with a Physio near me, only problem is the cost! X
I have knee pain, will have to have a replacement soon. And have just started ritiximab. Hope you can get somewhere with a physio or diagnosis of knee.
Hi Emily,
Welcome to our community, glad you've found us! If you need any information about RA then do head over to our website at nras.org.uk and you can always speak to our helpline team if you have any questions or worries by calling 0800 298 7650 or emailing helpline@nras.org.uk
Also, please look out for my post shortly on younger peer to peer telephone support volunteers. We have a shortage and it would be great for people like yourself to share your experiences and support others if you can!
I had a terrible flare that seemed to radiate both up and down from the area around my right shin. (I have replacement knees already) It seemed to match the pain of a deteriorating left ankle (which has since been successfully fused). It was so bad that I took too much of my pain meds, which usually work, and they did nothing. An AFO had helped with pain in my left ankle, so I got one for the right side, but nothing worked. This went on for weeks, until it pretty much just stopped. Although my right ankle shows deterioration in an xray, the terrible pain was an RA flare, that finally ended on its own. If I had gone to the Rhuemy, they would have probably given me a shot of steroids, which probably would have helped.
Moral: don't overthink it, it's probably a bad flare.
I have seen both my rheumatologist and orthopaedic surgeon recently so am well rehearsed in the full catalogue of my knee pains and other disturbances: sharp front pain , hot 'synovial' pain inside, shooting pain down the shin as if one has been kicked by a horse, an audible grating sound, locking and collapsing, the latter being the most dangerous and the reason I have to be on crutches. I've got both aggressive RA and OA, the OA having got to my knees first. According to the surgeon, when you get RA, the added strain that this puts on the joints ( even if erosion is avoided) can exacerbate the OA. In my case, it is now bone-on-bone and extremely painful,so I'm really looking forward to having a new pair on 23 June.
It's not for me to diagnose your knee pain, but I know that in my case the 'side pain' is mainly RA. The pain down the shin can be referred from anywhere. I found a helpful diagram, but if I look for it whilst I'm typing this on my iPad, I'll lose all this. I'll look in a moment and post it if I can identify it.
Thanks Jo, I've been to a physio and she thinks its all coming from my back, since she's been working on my muscles especially my lower back it has been a little better. So fingers crossed it'll be fine soon. Sorry to hear about your knees! Hope your new ones make a difference xx
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I had Baker Cysts behind both knees restricting my movement, before Rituxi started to work, and swelling and over the knees and knee cap swelling .. my knees were blobs! had lost all definition .. and I too had some side of leg pain . . just one leg and the better one too ... shooting down the side, which I felt were ligaments, as there was a seizing and restrictive feeling which wasn't like anything else. I wondered if my stronger leg was over-compensating for the weaker side. I would ask your Rheumy to refer you to the hospital physio for specific exercises and an examination of the problem area you describe, as they can usually tell quite quickly what is is troubling you. Good luck ;-). Neonkitty
but yes like you say, hurrah for Rituximab 
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