Can anyone offer an insight into swollen knees please ?
one is often purple and has bruises on it (not injured or knocked them ) . The left one aches and hurts at night and they have what can only be described as fat pads around them . GP confirmed it’s not fluid on the knees .
No one medical seems interested but I am worried about the swelling affecting the knee joints as this has been going on for about 6 months . The swelling never changes so no different night to day .
Tested postive for pm scl100 but negative ana so diagnosed UDCTD . Only on hydroxy at mo
Look forward to hearing from anyone who can shed any light ! 💕xx
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Tiggywoos
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Hi Tiggywoos both my knees have been swollen for 5 years now , I have lupus SLE and RA and OA , I’ve had X-rays which shows early onset Osteoarthritis, the rheumatologist just says it’s the RA that is making your knees swell, I also have no fluid on them, my right knee I get a lot of pain and have regular steroid injections in - my fingers have also been permanently swollen for last 6 years also - I would mention it next time you see your rheumatologist xx
Good morning svfarmer so lovely to hear from you 🙏.having one of those mornings when you wake up very teary 🥲. I have a hangover headache every single morning and today’s was a corker 😕. Sorry for moaning ! I’m so sorry to hear about your knees and fingers (I get the fingers too ) . Physio and GP did say it will be part of AI disease .
Problem I’ve got is I saw a private rheumatologist in Cardiff who was very good but said I need to be managed locally.
He referred me back to my local rheumatology clinic in Somerset but it’s a 9 month wait .
May I ask do you get seen in a rheumatology clinic or do you see a rheumatologist separately ?
Sorry for all the questions and for my moaning but you’re always so kind with your replies
Sorry to hear you are teary this morning. Have you considered compression gloves for the swelling in your fingers? Sending you gentle hugs and warm wishes 🤗 x😘 xx
Am so sorry your having a bad day Tiggywoos it’s always good to vent and you’ve come to the right place as the community understand what your going through- we’re abouts in Somerset are you? I’m in Bristol so go to BRI in Bristol town centre, it’s all on NHS and I’ve got to say they are brilliant there, my rheumatologist is really through and see him at least every six months, even though through pandemic , I’m so so lucky as feel really supported there and rheumatologist nurses are brilliant also . Be kind to yourself and rest and it’s ok to have a cry, am hoping tomorrow will be a better day for you xx
Oh svfarmer thank you for your lovely heartfelt message 💕it’s so appreciated . I can usually jolly myself up but you know as well as I do sometimes we just can’t 😕.
That’s really helpful about Bristol . I’m in Taunton and musgroves next appointment in rheumatology is December . The chap in Cardiff even wrote directly to musgrove as I don’t think he could believe how long I had to wait . I’m on hydroxy but that’s it . The waking hangover headaches are the bane of my life . I’m having a treadmill test Saturday in Cardiff and they are doing lots of other tests as heart rate seems to have lost ability to regulate .
I guess as I’m out of the Bristol area I wouldn’t be allowed to go but perhaps it’s worth me asking the rheumatologist ? Do you mind me asking who you see (I might be able to see them privately first perhaps ) ?
I’m sorry for waffling on but thank you as I feel bit better ❤️💗..
I hope you are having an ok day and keeping on top of the demons ?
I see a Dr. Marshall there but have seen a couple others that I can’t remember the names of but they are all really good. I hope things go ok with your tests on Saturday and that your awful headaches get better - big hugs 🤗 to you xx
Hugs Tiggywoos 🤗🤗🤗Sorry can't help with the knees but I'm just here to say u have plenty of shoulders to cry on here. I totally agree about crying being good for u so let it out..don't bottle it up coz that just causes more problems.
I hope u get some relief from the replies you've had about compression stuff.
Take it easy n please be kind to yourself today 💜🌈😽😽xx
Hi Krazykat26Thank you for your lovely kind words they mean a lot 🙏❤️. I went back to bed with Tiggycat this morning and put the electric blanket on . You should have seen his face bless him he thought Christmas had come early 😂😂.
I do feel so much better for sharing . Take care xxxx ❤️
That knee looks very painful. Were you recently diagnosed with undifferentiated connective tissue disease? When did you start Hydroxychloroquine? Have you seen a rheumatologist? A rheumatologist would likely be the one to decide whether a stronger medication is needed in view of the joint swelling.
Did your GP tell you to take aspirin or a similar anti-inflammatory?
Hi KayHimm thank you for your lovely reply 💕. I’ve been diagnosed with UCTD as tested positive for extended scleroderma and myositis antibody . Also elevated anti cardio lipin IGM . Started hydroxy 6 months ago and it’s been fantastic for the lupus rash but it’s done nothing for joints .
Both knees are always swollen and Gp said it’s beyond his knowledge . I’m waiting for an appointment locally as rheumatologist in Cardiff said I need managing locally but the wait here is 7 months .
My knees are crucial for my job and whilst I don’t want to take more medication I’m concerned constant swelling will damage the joints . I am grateful for the hydroxy though .
Thank you for listening 💕you’re very kind . Take care xx
Is there any way you can see a rheumatologist privately? I would be concerned about waiting seven months to see someone. I do not actually have joint issues - rare, I know and only know that rheumatologists seem get very concerned with clear signs if inflammation in the joints.
My impression is there is such a shortage of rheumatologists in parts of the UK that these doctors can only see the most serious patients. That is not a bar you want to live with.
Since you have already had your blood work done, the rheumatology visit could mainly be the cost of an office visit.
I’ve got private insurance thank goodness but for some reason the private rheumatologist in Cardiff wants me seen locally in Somerset . The guy he’s referred me to doesn’t do private work . I think I’ll need to put my big girls pants on and tell the Cardiff guy I can’t wait (he has tried to get the appointment bought forward but no luck ) .
In your experience as a patient do you have to be part of clinic to get the right treatment ? Thank you 😊 xxx
Actually I live in the US so I would not be the best person the advise you about the differences.
If Cardiff is far from where you live, then maybe the rheumatologist thinks it is not practical to manage you from a distance. You need to be able to get to his office fast if something serious comes up. The academic rheumatologists may be under pressure to see only the most involved patients. It sounded like at least one of the lupus centers in London was moving in that direction.
The big question right now with you is whether you need to be on a medication to keep your joints from being damaged. Did the rheumatologist see you when your knees were this inflamed?
Any good rheumatologist is capable of managing your condition. But seem to be way too few rheumatologists in certain areas.
Could you call around - maybe people here know private rheumatologists near you - to see if you could just get seen to get things moving?
You’re absolutely right that’s what he said . He said you need to be seen locally in case medication / care needs escalating . The knees have been like this for about 5 months .. he did see them but said any additional medication would be prescribed locally .
You’ve motivated me to see if I can find someone closer ... there is a couple of much larger towns only about 30 mins away whereas Cardiff is good hour and a half .
You have clarified it. The rheumatologist knows he is too far away to give good care. The main thing right now is to see a rheumatologist for evaluation of your joints. If they say based on exam there is no risk of joint damage, you can be reassured.
Your health is too important. Get in to see a rheumatologist if possible.
I get this too and very defined small purple bruising. It stopped when hydroxychloroquine kicked in. I've stopped and started hydroxyc. and in between the bruising came back. Weird. GP and consultant not interested.
Hi Tiggywoos - I think I know what you mean; I have little balls or lumps that feel like hard jelly which are on the knee cap and sort peaking out of the bony bits just above my knee. I also have them behind my knees. They come and go and often feel bruised and look bruised too. They feel a bit like the ganglions I have in my wrists.Sometimes they are in the centre of the big bruises. my GP said that they are as a result of inflammatory arthritis but then again he has been saying that pretty much everything is as a result of inflammatory arthritis : the Arab/Israeli conflict, plastic in the oceans. My rheumatologist consultant has asked me no questions at all and after a year said that most of what I describe is not inflammatory arthritis. The private consultant said that there is evidence of inflammatory arthritis and told me to go back on the hydroxychloroquine.
It would be like a comedy were it not for the huge amounts of money spent, the totally unnecessary medication (MTX for 5 months) and I'm still not really any the wiser.
Early on lupus was hinted at because of antiphospholipid antibodies but never followed up.
I have a 'second opinion' appointment in July with NHS again and this time I have been asked to bring a urine sample so I am wondering if this is what is going to be looked at this time.
I've been googling, of course and surprised to see that a lot of the lupus symptoms I 've read about match mine: the fleeting joint pain, nose sores, Raynaud's, night sweats. they are things I haven't mentioned to the GP (except Raynaud's) for fear of being dismissed or told it's my imagination.
I wonder though, if they do blood tests for lupus will the hydroxychloroquine affect the results?
Definitely worse! Beginning to wish I had kept my mouth shut but as per previous reply back on the hydroxyc. My worst areas are wrists, really bad elbows and shoulders especially the right. My groins, both sides (I think this is 'hip' pain) getting in and out of car. Really strong and sudden and enough to make me wince or especially the shoulder scream in pain. It passes and as long as I don't lift my arms I'm OK! Elbows are pretty much all the time.Been dosing up on Naproxen for a bout a week now. Not sure it's doing anything but apparently takes a while.
That’s really good question about hydroxy affecting the results ???? I bet one of the lovely people on here would know that ... I feel for you with the elbows ..mine are like Chinese burns 😣.. the shocks come from no where . Your pains sound so awful I really don’t know what to say 😞.
Ever tried it been suggested amytriplin? Lots on here take it ... I’m never sure if it works because it makes me sleep or because it targets the bone pain but it does seem to work .
I can honestly say hydroxy has done nothing whatsoever for my fatigue or joint pains / swelling but if you could see the pics of my rash before I was on it you’d be pretty shocked ..so for that I am grateful .
Jeeze .. there really doesn’t seem to be any joined up thinking does there ??
I’m sad to say I found NHS worse than shocking but I think perhaps I was unlucky as others have had and do have good experiences with nhs consultants . I wouldn’t have treated my cat like they treated me but that’s another story and now I’m rambling 🤦♀️😂.
I really hope July provides some answers for you .take care xxx
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