Coping with Osteo & Lupus (SLE)

[roses4evver]

Hi everyone,

I had that 3rd ortho opinion today & it went well, he will give me a Lt TKR...YAH. I deeply feel it was meant to be, and that I found a Dr that can give me a chance at having quality of life and a ray of hope of having a future. The whole 15 min drive home all I could do was praise god for this oportunity.

I found out this ortho takes risks with surgeries when a patient is at the end of their rope, all other options are exhausted, all areas of a persons life is terribly disrupted, when the medical problem becomes a disability & all hope is gone.

He told me that I am a high risk patient because of SLE(lupus), diabetes, osteo, rheumatoid, connective tissue, hx staph/MRSA. He does want me to do a few weeks of PT first because my knee is so stiff & has no flexabilit. Also told me that if it was too painful or it made my knee worse then stop Pt & call to get a surgery date. So I expect in the next 6 wks he will do the LT TKR. Hopefully I will heal well so he can do a scope on my rt knee & replace it too.

Told me I could expect 10-12 yrs or more with my new knee before needing a revision. Plus to expect a few more yrs as I loose more weight (I want to loose 45 lbs). Of course I could have complications as with any surgery. The Systemic Lupus seems to be the greatest concern to him. If anyone has had any experience with having SLE and having a major surgery please let me hear from you.

In the meantime I will continue to hold onto my faith & believe in the miracles of God!

Thanks to all for your thoughts & prayers to end my pain

[Baybreeze]

Roses,

I just had spine surgery 5 weeks ago and I also have lupus, though it's pretty much under control. When I get a flare, I get lupus arthritis with swelling & pain - sometimes in a couple joints, other times it feels like it's everywhere; hives; extreme fatigue; rashes; eye swelling; easier bruising; visual disturbances; and sometimes nausea. However there are many others with much more complicated & dangerous effects of lupus....do you have a bleeding disorder or other serious issue caused by your lupus?

I had my surgery & was worried about getting a flare afterwards, but I seemed okay. The only thing that's flaring up for me are all my joints, though I have no swelling - just pain & stiffness. I do also have osteoarthritis in my spine and for all I know I may also have OA in other joints plus the lupus arthritis. It's been raining here alot lately and getting colder...and I feel it in my joints. So I don't think it had anything to do with my surgery. After surgery I did have alot of bruising which pretty much covered my entire rear end but I assumed that was normal after surgery. It took a few weeks but it went away ...and my incision site has been healing nicely as well. For me, it was the best decision I made to have surgery.

Another thing.....make sure to tell the hospital every single med you are allergic or have reactions to. Are you also severely allergic to sulfa antibiotics? If you don't know...and you have lupus, be really careful. You might want to mention a concern about it b/c many with lupus have severe reactions to it. I'm not sure about yours, but after my surgery I had an antibiotic drip. (Of course I told them all the meds I couldnt take, but they ask you that anyway)

[roses4evver]

Hi Baybreeze,

I'm so glad you have not had any major issues after your spinal surgery! What exactly did you have done? Was it a Laminectomy or did you have a cage put in with fusion of your spine? How old are you?, I'm 45. Most people like us who have severe Osteo in a joint is usually not limited to just that one joint. Like me it's in other places too, just not as extreme as in my knees & low Lumbar area. I will be seeking spinal injections for that soon. But I have to get this PT going to see if it will help with the stiffness in my lt knee. It is known that what ever the condition the joint is in before surgery (stiffness or flexible) that is how it will be after surgery & no Dr wants that. To have the best recovery you want a flexible joint even if it hurts to do so.

No, I do not have a bleeding disorder & as far as I know I'm not allergic to anything. What are some examples of sulfa antibiotics??? I know from many previous surgeries that it takes me longer to heal. Even a scratch can take up to a month to heal & go away. Also I had sinus surgery 1 yr ago for sudden chronic sinusitis for a year prior. It's a year later & still every 6 weeks I'm in the ENT's office for bacterial infections & am now just recovering with medication for staph in my sinus. So this is an ongoing problem & why the Ortho said I'm at high risk for infection after TKR. Could Lupus be the culprit for this problem do you think???????

I like you have stiffness, swelling, painful joints all the time. My lt knee is still full of fluid 5 mo later & it feels like the rt knee has fluid also. I'm having these flares constantly, small & some real big ones. There are very few days that I feel it's better...& when I do it's like THANK YOU GOD for some relief! I know you know what I'm talking about.

I feel deep in my heart that I'm making the right decision to have the surgery. I have constantly asked for guidence and to lead me in the right direction & I feel no hesitation at all...so to me that is good...lol. This ortho said I will be lucky to have use of my legs for 2-3 yrs, after that he told me yesterday that I will not be walking at all. In my heart of hearts I need to take this risk if I want any chance of living a non handicapped life. I'm of not much use to myself, my family, nor my job the way I am now yah know. I just know the blessings will be there when the time comes.

How long will your recooperation be? Will you have a job to go back too? In the meantime you just keep taking good care of yourself & re-cooperate quickly.
My prayers are with you!

[Baybreeze]

I am 37 and had laminectomy, though I did not need fusion. I went to PT 3 times per week for almost 6 months. (insurance only paid for 6 weeks but my awesome PT offered me a great to pay & come on my own to do my exercises, I just couldnt get the tens & heat theray). And I strongly believe (as does my PT & surgeon) that doing the exercises for all that time before surgery is helping my recovery after surgery. Don't get me wrong, there is definitely pain after surgery, but for me anyway, it was pain from the incision, which was fine by me b/c I knew that would gradually go away, and it has.

Septra and Bactrim are both sulfa antibiotics and it is known that people with lupus tend to be more allergic to these drugs. I ended up with a 104 fever, huge hives on my entire body, swelling, turned bright red, then developed a horrific dark purple rash all over my body (looked like I had leprosy or something). Needless to say I had to rush to the emergency room and got injected with prednisone, benadryl..and something else. The rash I got took almost 3 months to go away. So be VERY careful about these drugs!

I seem to have some healing problems when im in a flare but maybe b/c mine is more under control now, my surgical wound seems to be healing very nicely, thank god. I used to get bad sinusitis infections but since my current rheumy has been treating me, they don't seem to be as bad anymore. However, I never had a staph infection..and I do know that can be dangerous. I just saw a documentary about staph and MRSA in one hospital that was caused by improper procedures by staff (bad hygiene, not washing or sterlizing things well, etc...) and they actually admitted to it, investigated it, and are taking steps to make the risk as little as possible. It can happen in tatoo parlors, nail salons, piercers, etc..when they don't sterilize things properly or wash properly, etc...Of course i'm not a doc, so i cant say what keeps causing it in you - just noting some known causes of it.

My surgeon say my recouperation time would be about 6-8 weeks (that's on average). My next appt. will be at my 8 week mark, so he may let me go back to work then. THANKFULLY...I do have a full-time job to go back to and actually they were all quite supportive and also pushed me to get the surgery. I was hesitant at first, afraid of flaring, afraid of complications, afraid of surgery as Id never had one before. But I am 37 and was at the point I could no longer walk upright and couldnt walk or stand for more than a minute or so from the pain, which also caused spasms not only in my lower back, but also in my neck, face, shoulders...I couldnt imagine getting any worse. Even my coworkers thought I would end up in a wheel chair soon..they told me to please just have the surgery and I would feel so much better. I did have it, and they were right. I still have lupus and my other joints are aching, but the worst pains from my spinal condition are now gone. What a huge load off!

If you decide on surgery, make sure you have a good surgeon, a good hospital, and most importantly, a good outlook for yourself! And make your concerns known to your docs & hospital about your staph infections, or any other concerns you have. Then again, in your pre-admission testing, the hosptial should be asking you lots of questions about your health. If you think they didnt ask about something you get, then let them know about it anyway. Thanks for your prayers & i'll do the same for you!

[anxiousinnj]

Roses--I'm soo happy for you. There is light at the end of the tunnel. And I have not forgotten--I will ask my rheumy in Dec about joint replacments in us lupies.

Be well,

anxiousinnj