Knee replacement

[JanetDavis]

Just wondering if anyone suffering with vasculitus has had a knee replacement?

[Macedon]

Hi Janet.

I had a knee replacement 12 months ago. I'm 73 with MPA. All seems to have gone well though recovery was probably a bit slower than a fully fit person. I would certainly recommend it if it is necessary as in my case there is no pain and I am no longer limping ( or only slightly!)

FYI - I live in Australia and had a very good surgeon

[JanetDavis in reply to Macedon]

Thank you!

[Nadine99]

Don't know if it's relevant to you, but my husband with GPA (Wegener's) has had 2 hip replacements and due a shoulder replacement caused by Avascular Necrosis brought on by Pred use prescribed over the years for his Vasculitis. On another note, my elderly mother dances around on her new knee!! (but nothing to do with vasculitis)

[JanetDavis in reply to Nadine99]

Thank you so much for taking the time to reply, I too have GPA and am frightened of having an op as I have been slowly coming down on the pred and don't want to cause a flare up! I can hardly walk at the moment as my knee is do bad. I feel more positive for you post - thank you!

[Nadine99 in reply to JanetDavis]

If you can hardly walk at the moment, then it can only be better to have the op.

[Ponywoman]

I had TotalKnee Replacement a yr ago on August 24. Sorry to say, altho the only vasculitis symptom I had at the time was a varying sense of foot numbness, I awoke from knee surgery with severe foot drop in the leg operated on. Still have foot drop but theres some movement in the ankle after 4 Rituxin infusions. Biopsies of nerve & muscle later confirmed vasculitis-- Rheumatoid Vasculitis as I've had RA for almost 50 years. Knee was the worst the surgeon said he'd ever seen & I was hobbling on 2 canes. Surgery itself was good as my knee bending angle after surgery hit normal in about a tenth of the time as happens in most folks. Using wheelchair now for a year as vasculitis "ate" all my muscle. Knee bones stick out & other knee now painful & bending but fear surgery again. Wrap my foot with bandage & learning to walk again with 2 canes. Hate my $1000 foot orthotics Medicare got me for foot drop so just wear fuzzy Ugg-type boots to walk in. Have lost my life work of breeding, showing Appaloosa horses I sold World Wide. Very depressed... I'd still recommend knee surgery, tho, Janet, if its too painful to walk. Have you tried the Lidocaine patches, nerve 'burning' in the knee? I'm using a soft brace now when walking & will get something new soon: nerve freezing in my knee. (In unoperated on knee). Take Care, Ponywoman

[JanetDavis in reply to Ponywoman]

Hi Ponywoman, thanks so much for taking the time to reply. Sounds like you've had a horrendous time of it. I'm seeing the consultant on Tuesday this week and hopefully talk through the risks of the surgery. I'm worried about long term use of steroids on bones and have slowly been decreasing them, but now I can barely walk due to the pain. I too am very depressed as my love is walking our beloved dog in the woods etc so I understand how you must be feeling. I hope things get better for you, thanks again Janet

[Ponywoman in reply to JanetDavis]

Hi Janet, thanks for your reply. I THINK I would still do it again-- that is-- have the knee replaced inspite of the subsequent foot drop! My pain & what you're going thru now is, frankly, not to be tolerated! Yes, I have bad elbow pain, too, ( from decades of RA) but darn it, we don't have to stand or walk on elbows! Its awful as we both know. I get out on our farm for only a few hours once a week. Only less than 2 years ago, I spent all day outside working on my farm...then came in at nite to clean house, make husband's supper, do bookkeeping. I LOVED IT! Years ago we rented a 1000 acre farm & there I could ride my horse thru the woods, followed by my Shetland Sheepdog... ah, those were the days. Pardon me while I wipe a coupla tears. Husband never let us get another dog after his German Shepherd died (old age). Lots of cats, tho, & the deaf white kitty would walk in the bit of woods on our farm with me but she can't go outside any more without me to keep her from harm on the road in front of our house. I was very afraid of the knee operation too but if your surgeon is experienced, Go For It Janet! & sure you'll be walking your dog again in no time. Check online & you can even start the knee stenghthening exercises before the op-- up to point of pain. These exercises are to strenghthen the hip, thigh, calf & knee MUSCLES ONLY. Should help. We'll think of you, pray for you, Marsha

[JanetDavis in reply to Ponywoman]

Thank you! I saw the consultant yesterday so the process towards the surgery has started. I will look on line for the excercises you mention. Your life sounds idyllic what memories you will have. Thanks so much for your support Janet

[Mal06]

Janet hi I've had TKR 3 years ago, was due to have other but I've postponed. It has helped greatly with pain and mobility is better with that knee, but I had a very long recovery period due to all of my interconnecting illnesses. It's a big op, and we do take longer to heal. I'm not sure why your reducing your pred - what dose are you on? I was on 20 when I had my op. The only thing they stopped about a week before was aspirin as you can bleed a lot. Hope things go well fir you, good physio is very import t - mine was delayed hence the very slow recovery, and I had several rounds of it including g hydrotherapy important to do exercises they give you as well. Take care.

[JanetDavis in reply to Mal06]

Thank you so much for your reply, I am currently on 3mg of pred as was told the lower the dose the better, however I have noticed a few spots and am terrified I will have a relapse before or after the op which is ten days away! 😞 Did you need a blood transfusion? Best wishes and thank you Jan

[Mal06]

Hi no blood transfusion, just took long time to get pain sorted after op due to other problems I've got, which meant mobility was slower. If in doubt raise your pred by at least 5mg to see if spots and you feel better. Much more important to feel good beforehand to help with recovery. Have they assessed your home - they assessed my armchair. Put risers under legs so that I was in better position to push up to stand, a toilet frame again to be able to push up to stand and a bed rail thing which helped get in and out. Once op was over they gave me a thing called a 'leg pull'- basically long thing almost stick like (but made of material) with hole at bottom to put foot in - helps raise it to get in/out bed, put on trousers/pants etc. Then a grabber which helps with some of this but also if things low down and you can't bend to get etc. Along with a 'cold' knee compress wrap thing - they fill with hydro ice stuff for you to take home. Put in fridge and wrap round knee every few hours for 15-20 mins really helps with pain/swelling etc. You'll also need a pouff as need to keep leg elevated - I found mine was bit too low so added pillows. They show you how to use crutches which you'll need for some weeks after, physio usually starts some weeks after. Make sure they give you painkillers to take home, make contact with GP fairly quickly - they'll send copy of your discharge, to ensure continuity of pain meds avail as they'll give you minimum supply, and any infection problems sorted quickly. My son took me home - it was like a carry on film trying to get into car seat.... couldn't bend leg properly to get in....never thought to ask in-house occ health how to do!! They get you walking and try you on stairs before going home and give you exercises to do. You can shower but keep wound dry - I had self absorbing stitches which went after about 10 days. Try a plastic bag with tape round, have sonmeone with you in case of slipping and perhaps plastic garden chair to sit on whilst in shower. All the best. Take care.

[Jan22 in reply to Mal06]

Thanks for all the information very useful. I am a little nervous re the op but I know it has got to be done as my mobility is now so poor. Thanks for sharing your experience with me it has helped a lot. Hope you are now much improved. Jan 22

[eliza80]

I had 2 knee replacements. could not walk and in a wheel chairbefore. now wow swim gym

no pain full movement a teenager again. even out on my motor bike( my greatest pleasure)

I am in my 80 s oops did lose weight to aid prognosis and healing.