Not sure if this is part of lupus, but my ankles are getting a lot worse .
I have a phone appointment with Rheumatology this Thursday , just think most things are falling on deaf ears .
I’m size 10 , so I do look odd with these ankles .
I’m also falling over evertime I look down , worse on a morning .
Still suffering the effects of Azerthioprine , seen gasro , due to continuing stomach pain.
Consultant says I’ve had acute pancreatic , and is well known that 10 percent will have this side effect , this started beginning of last year . I’m not on medication except Hydro , as cannot tolerate methertroxate and Azerthioprine . So not been treated and flaring for about a year now . Joints are unbearable . Never might all the other health issues .
Hoping I can get treated soon . Consultant mentioned myclofenic . I’ve had 2 steroid infusions , for the joint pains , these only last a couple of months .
Wondering if my ankles are suffering sinovitis , before only had sinovitis in one joint at a time , anybody else had sinovitis in both ankles .
Expect I’ll have to go in for a steroid injection again .
I’m a bit annoyed , has there doesn’t seem to be any urgency with treatment .
🦋❤️
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Willow1414
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Hugely feeling for you willow...my predisposition to a very similar degree of oedema in my ankles & feet has become chronic since late 2018...it’s dreadful and my medics + I have to work hard on all fronts (me via self help & my medics via investigations to figure out the cause/s). Am sure you know many things can give us this sort of flaring severe & persistent symmetrical oedema....and in 🦓 like us there can be several overlapping causes...it’s dreadful...mine looks like yours & I’m tall + slender 👍
my medics in several different disciplines (GP + rheumy + immunology + gastro) are trying hard to figure out my version of this, and,, 3 years into investigations, we STILL aren’t sure what these causes are 🤷🏼♀️...except we’re pretty sure this has quite a lot to do with my advanced age (67) & the relentless multisystem progressive debilitation (especially the mess my spine is in due to hEDS scoliosis & facet joint syndrome + grade 2 vertebral fractures & the state neurosurgery’s instrumented fusion has left me in: all of this means I can’t be as physically active as needed to keep my circulation health...lequally responsible are my collection of very very early onset immune dysfunction & connective illnesses cause all these also make my circulation struggle...& my rare type of organ failure just makes it all worse 🙄...)
so I’m glad you’ve posted & am looking forward to following your discussion...+ hoping you figure out your version of this + get helpful management plans in place faster than we are managing to in my case 🤞
Thank you for your reply , and sorry you have still not the answers for your swollen ankles .
Yes mine has is now chronic , I will mention then during my phone appointment tomorrow to my rheumatologist , but I have so much to cover , and might be bottom of the list . My elbow , wrist , pip joints are my worst symptoms , Carnt bare the discomfort and hot fissing pain , these joint pains start at their worst about 4 or 5 in the morning , and continue until mid morning , I Carnt say the pains ever go , but they ease a little , has I try and go about my day .
My fatigue was top of the list , but in the past year , my joints are well at the top of my list now. I have had an ultra sound scan of my wrists a couple of years ago , early erosion was diagnosed , I think I may well have rheumatoid arthritis has an added bonus to the lupus over lap sjowgrens . Has well has many other complications , and severe arthritis in upper spine .
I’m going to insist on a MRI of my joints .
My health and lack of it , seems to preoccupy my thoughts a lot , I’ve read that lupus does not cause bone erosion , Im positive ANA, positive Ro52 consistent .speckled I think I’ve read a long time ago , I don’t have Rheumatoid factor , but I’ve read this is an old test , I’m also going to request the the more accurate modern blood test . Azerthioprine gave acute pancreatis early last year , its left me with duadinitis fluctuating abdominal pain .
I am quite sensitive to these serious meds . I’m now frightened to take the third in line myclofenic , that I know will be discussed tomorrow .Methertrexate sent my liver function up to 92 .
Sorry about the spelling 🙇♀️
Funny thing is my anxiety about my appointments gets worse every time .
Thanks for explaining...I’m very sorry you’re having an especially tough time...some of us are ultra sensitive & complex...main thing is you’ve got your medics’ attention despite the pandemic distracting them: well done! And it’s really good you’re here reaching out: there are many very sensible expert patients here...who totally understand how dreadful anxiety can be re every aspect of our care & lives...
Hi WillowThat looks very painful and I'm sorry your struggling. My ankles looked like that before my lupus diagnosis. Turns out my kidneys were leaking a protein called albumin and when the level of albumin drops in the body you get fluid retention. The level should be 35-50 but mine had dropped to around 20. My ankles were so swollen I couldn't walk.
Lupus nephritis can progress very quickly and is severe in its symptoms. If left untreated, sometimes the damage to the kidney is irreversible.
Having said that, ankle oedema can be down to cardiac function or a number of other causes and, as I don't know your full history, I won't speculate. But I would request an urgent urine dip to check your kidney function and blood tests to confirm / refute any potential diagnosis.
💐Yep: so helpful that I decided I have good reason to fill my Univ Hosp rheumatology team in re my version of this via our patient portal...sent photos + a brief summary re onset etc etc + photos & explained what gastroenterolpgy & my GP have done as we try to figure out cause...also asked rheumy team if perhaps liaison with GP & with their colleagues in my 2 other lead clinics (immunology & gastro - gastro is already investigating the oedema with GP...but am sure they are clueless re poss SLE causes) there might be reasonable 😉....🤷🏼♀️🤞
Oh that sounds like really good initiative on your part. Hopefully all the departments will work together but then that really would be too easy! Initially I needed to take furosemide which is a water tablet to try and reduce the fluid retention until my kidneys kicked in and started working.
For an adult the normal kidney function is around 90-140ml/min but mine had dropped to 15. I had blood in the urine for 10 days and the GP just sent off repeat samples. The function had dropped so much because my lupus nephritis had reached stage 4 which they found when they did an urgent biopsy after 6 weeks of ankle swelling, an incompetent GP and self presentation to the A&E for a proper assessment. The good thing was that Hammersmith hospital were totally on the ball, started treatment 2 days after the biopsy and, as it was reversible, over a period of 6 months I got back into the normal range.
Its so hard when you're going through it, especially with complications like blood clots and emergency admissions but I've come out the other side and its under control. I was back to work after 10 weeks on a phased return and now, 2 years later, I'm in a new job.
Its a long a difficult road. I was so capable and self sufficient and suddenly I couldn't walk 50m without a sit down. Accepting your situation wins half the battle.
🤦🏼♀️ you really know what this is about...can’t thank you enough...every detail helps...relieved you’ve got your version figured out...just hope it’s cooperating with treatment 🤞🍀❤️
Hi willow I feel your pain. Like you I’ve a swollen ankle but I was diagnosed with lupus nephritis, inflammation in the kidneys..I knew something was wrong but didn’t know what. Bit of a shock it was 😢😢..
Maybe if you get them to check a urine sample the protein will show up.. it needs addresses immediately if possible. I’m on medication now and more stable but I neglected my symptoms for ages so don’t do that... let’s us know how your getting on but don’t stop without getting to the bottom of it.. best wishes. X
Sorry you and others are suffering this awful symptom. I don't have any answers but can relate my own relatively recent experience of ankle and wrist swelling ( since last August).
My rheumatologist didn't seem that bothered, but fortunately my GP independently sent me for an ultrasound of my wrists and ankles at my local hospital. This showed inflammation of the joints, and also of the tendons.
The sonographer thought it was autoimmune because of the tendons that are affected, in my ankle especially- apparently they are not ones that typically get injured. But due to the rheumatologists lack of interest, I don't have any other answers I'm afraid in terms of explanation or treatment. I'm on hydroxychloriquine and apixaban, as for some reason the inflammation in my ankles spread around the soft tissue above my ankles and then I got a DVT.
I tested positive for RA over 20 years ago but the possibility that I had it, or any other autoimmunity was dismissed repeatedly. I have not tested positive again, but may ask to be retested on my next follow up.
I have a follow up in rheumatology late this month and will update if anything useful comes if it 😊🌻
Before my heart procedure( I had an unknown congenial heart defect found after a stroke) I had swollen ankles from time to time. However, after the heart fix I never do anymore even though I still have lupus and APS. I kept blaming my edema on my kidneys and lupus it was actually a heart issue non related to my lupus.
Many diagnosed with one disease are quick to blame all their bodily symptoms on that disease when in fact co-morbidities are likely. Ask for a metabolic test to check lipids, kidney and liver function and a fasting glucose test. If you are above fifty an echocardiogram is often a good idea.
👍 SO TRUE! Am glad you’ve mentioned heart issues cause these are 1 of the 3 angles i suspect may underly my version of this (the 3 being: my intestinal failure, my kidneys issues, my heart issues). Have been & still am very open minded about whatever could be causing my oedema...& your reply encourages me to stay this way! Thanks Roarah...am glad your version of this became clear & got the treatment needed ❤️🍀❤️🍀♥️
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