SLE and total knee replacement

[Jude65]

I had a total knee replacement nearly 4 months ago and my knee still feels warm/hot to the touch and still is painful at times. It seems as if it may be inflamed inside. At the same time my other joints and muscles are grumbling.

I don't know whether I should just be patient as I have been told that it takes up to 6 months for the knee to settle down or whether I should ask for an early appointment with the surgeon of rheumatologist.

Has anyone out there had a knee replacement with SLE and what were the outcomes?

Jude

[vitalspark]

Had my first replacement about 5 years ago and currently on the list to get the other one done.

I had the worst flare ever after the TKR, caused by the trauma of the surgery, and had to delay the Physio which all meant that it took me more than 3 months to really recover but it works pretty well now and it functions well, waiting to get the other side done if my coming visit to Vascular Surgeon.I was told pre op by the surgeon that it will not be the same as the original, noisy and a bit clunky, was how he described it and it certainly is that, but a vast improvement over previous pain.

The Physio post op is really important, best advice is to work hard at the Physio and not to expect too much to soon.

Good luck.

[EOLHPC in reply to vitalspark]

glad you replied: Well Said 👍👍👍👍

Am right now trying to get my head around something similar (am 65 & facing spine op by neurosurgeon...and am recovering now from his diagnostic CT-guided L4 nerve root injection which has triggered a big lupus flare - mainly my neurocerebral manifestations inc cognativd imp, fatigue, clumsiness + vascular stuff inc livedo reticularis)...

So, am telling myself: i’m having surgery... i have infant onset lupus & i’m used to flares caused by medical procedures like surgeries, & even medical investigations (eg hypoallergic reactions to everything from barium swallow contrast agent to retained video capsule endoscopy + to bowel cleanse agent before MREnterography), and also infections, accidents, injuries etc...even when i’m adequately medicated via my therapeutic daily combined meds, these sort of things have all triggered lupus flares over the decades...so me + my GP, immunologist & rheumy & neirosurgeon simply must somehow have agreed a plan for managing any post surgery flare or infection....or whatever

I totally agree: expert rehab with the right physio is crucial 🍀🍀🍀🍀 Coco

[Jude65 in reply to vitalspark]

Thank you for your reply vitalspark. Fortunately, I didn't get a flare after the surgery and I think I did well but I suppose by now I had thought that the knee would have lost it's heat and sometimes burning feeling but I guess this can take a long time to settle.

Good luck with your 2nd TKR.

Jude

[EOLHPC in reply to Jude65]

Jude: is there any chance you have a slow burn infection?

[Jude65 in reply to EOLHPC]

I did wonder that myself but I don't have a raised temperature and don't feel as if I have an infection but could it just be confined the inside the knee? It has been like this since the op. When I saw the surgeon two months post op he said this was normal as the TKR is a major op and a lot of damage is done to this complicated joint, including the nerves.

Jude

[EOLHPC in reply to Jude65]

In my experience infection could, eg what immunology diagnosed as my “persistent pockets of multisystem pockets of bacteria driven sepsis” ...in my case all this continues despite constant daily antibiotics, main cause being chronic hypogammaglobulinaemia...but, my understanding is that in long term older lupus patients persistant local infection onset can occur due to trauma + mmunosenescence along side autoimmunity (& immunosuppression meds)

I think vitalspark’s advice below is vvvvvv sound...THE voice of experience!

but IF this seems worse in any way...don’t you think it’ll be wise to consult medics?

[Jude65 in reply to EOLHPC]

I see my rheumatologist in 4 weeks and prior to that have a full range of blood tests including the lupus tests so I will wait until then to see what he thinks.

Thank you Barnclown for taking the trouble to reply.

Jude

[EOLHPC in reply to Jude65]

GOOD! Hoping you & your medics clarify this promptly & make any necessary adjustments to care promptly.

You’re TOTALLY welcome...NEVER any need to apologise...following & taking part in your discussion TRULY IS HELLP8NG me A LOT....

[EOLHPC in reply to Jude65]

PS

Sorry should’ve replied to your ?s:

I have had infections with & without raised temperature

My medics scrutinise my various WBC results individually when i have signs of infection withoit raised temperature...eg because i have chronic lymphopenia due to childhood onset lupus, my lymphocytes tend to get into low normal range, and my neutrophils increase significantly..so my total white blood count may be in normal ref range, but lymphocytes & neutrophils will have increased a lot compared to “my normal”

In my experience v few surgeons understand that lupus patients can have atypical signs & types of infection

[EOLHPC]

😍 Thanks for posting Jude! Am wondering something similar myself (i’ve explained in my reply to vitalspark)

Hope you’ll keep us posted on this surgery

🤞🍀❤️ Coco

[vitalspark]

Jude, by the way swelling took almost 6 months to go completely and during all of this I was feeling it pretty warm, I had no infection but was checked for this 3 weeks after op, pre hospital admission because of the flare, no sleep and pretty much unable to eat, because they thought I may have had MRSA and it involved poking needles into and around the knee joint, excruciating pain but luckily no infection.

I would most likely give a little more time regarding seeing anyone and just keep working at the Physio.

[Jude65 in reply to vitalspark]

I thought that I had already replied to the above post but it doesn't show here so I'm writing again. I found your message very useful because I haven't come across anyone else who has had a TKR and who also has lupus.

I see my rheumatologist, after having blood tests, in about 4 weeks so we will see what comes of that. Last time my C4 test was a bit abnormal and he talked about going on mycophenolate low dose again as I stopped it 6 months ago prior to the op. but I really don't want to unless completely necessary.

How are you regarding your lupus now?

Jude

[foofan]

I had a TKR almost 2 years ago. It was quite extensive (bowed out and all) It took me a full year to regain all function and be able to go up stairs normally. It was warm and swollen for at least 6 months. Also the incision was uncomfortable and I could not even bare the bed sheet on it for that long. It was hot to the touch for me also and the only thing I think got me through it was the great PT that pushed me and also massage and stretched the joint. It never hurts to check with your Dr. I had a slight infection in the incision and texted his office pictures and he ordered antibiotics and I didn't even have to visit his office. ( a far distance from my home) Hang in there for some of us it takes a long time to recover. I was upset with all the people who told me it was much easier and shorter recovery for them but we are all different. I hope you will be as happy as I am that I had this done. Good luck.

[Jude65 in reply to foofan]

Foofan, it was really good to hear that you had a similar experience. Thank you SO much for taking the time and trouble to reply. I now have confidence that it is normal and that I will recover in time.

Jude

[Florence91]

Hi Jude65, I had a knee replacement in 2012 so nearly 7 yrs ago I do remember it being hot after but not for how long. I have SLE like you. I've had surgery on my toes 3 months ago and again have a very inflamed big toe. Had lots of antibiotics with some effect but back to ice again and it's been a slow recovery with lots of joint pains and fatigue which I put down to lupus as usual. Don't know if that helps. Hope you feel better soon.

[Jude65 in reply to Florence91]

Good to hear from you Florence91. Ice (frozen peas in my case) works wonders but I haven't had to use them for some time. Those of us with Lupus have to expect a slow recovery but we will get there in the end! I think that it is wonderful that despite all that we have to put up with we can recover.

I have been so cheered by the response that I have had on this site and determined to persevere with increasing my walking and keeping up the exercises.

Good luck with your very inflamed toe which must make walking very difficult - I feel for you.

Jude65

[Florence91]

Thanks. I found knee repl easier than this funnily enough!