My Spouse has Lupis and I need info specific to surgeries

My wife is going to have a second knee replaced this month. The first one was easy because Lupus was not really a factor at that time. Currently her Lupus has been terrible with steroid use necessary for three months. Every time she stops them, the haves return with a vengeance. Now that she is going to be stopping a lot of the meds that have made her able to function, I am concerned how much Lupus complicates things like surgery? Sometimes the number of prescriptions she is on are more of a concern that the Lupus, but I know how much pain she will be in once she stops taking them!

Can anyone give me some insight as to what i can expect? If you have had major surgery how much did the lupus complicate things and how long before you were able to resume the Lupus meds?

The last knee usury was pretty non eventful, but I have a feeling that may not be the case this time and i am WORRIED! I have no idea what to expect and the doctors seem to act like it is no big thing. Any info would be greatly appreciated!

I have active lupus and didn't need to stop any meds other than the NSAIDS/ aspirin as they predispose to excess bleeding. I remained on my prednisone and plaquenil and all my other meds During and following surgery they do increase your steroids to prevent an Addison crisis but that is only for a few days. I have had a knee replaced and also a shoulder replaced- and recovered uneventfully both times

Thank you! I will see if i can find out why they want to stop everything two weeks before the surgery. Even being off the meds for two or three days makes a huge difference and i can't stand to see her itching and hurting for a day, let alone a whole two weeks!

A lot of doctors don't seem to realize that you have to go off prednisone slowly so taking her off 2 weeks before is wrong. I had knee replacement a year ago and they kept me on the pred. I had back fusion in March and they kept me on it then too.

Was it the doctor or a nurse that told her to go off the pred? As far as complications go with the lupus that is so different for each person that no one can really tell you what will happen with your wife. Prayers, good luck, and gentle hugs to you both.

I agree. Please do some checking before stopping any meds. Stopping meds can cause a severe flare that can affect organs even if you haven’t had any organ involvement in the past. And I agree with reet. You don’t just stop steroids one day. You have to taper off slowly. I’m not a medical professional … but I’ve been a patient long enough to know better!! Learned the hard way. Lol!

My husband had two knee surgeries and does not have Lupus.. However, we did learn a few things that may help. The nurses can not do anything unless it is in the doctors orders so make sure you give your doctor a list of things that should be done after surgery.( also called suggested recommendations)these things we learned after the first surgery (info was from the physical therapist we had AFTER the first surgery)

Number 1 was ice immediately after surgery. Number 2 have continuous passive machine

also right away.(huge difference in recovery time) Also order for home use after out of hospital. Number 3 Warfin make sure it is a low dosage if you have bleed problems...there is suppose to be a new more friendly drug available now...I do not know what it was. Number 4, Make sure it is a knee prosthesis that is not causing Chromium to contaminate the body. Number 5 Make sure doctor is using computer assist and ask if it goes down. One of my husband's knees is much better then other as computer went down during surgery. Number 6. If not using computer...the spacing can be off... the knee needs to work when knee is bent and when knee is straight. This is your body so don't be shy about asking for what you NEED. (Not to make a pun!) Lastly pray for the guidance of the doctors and nurses during your surgery and recovery? Visualize your having a pain free and healthy knee. WISHING you a safe and speedy recovery.

PS I do have Lupus and my main problem with surgery was swelling so discuss a soft cast or ask what doc can do in the event that happens. Make sure it is in the notes for the nurses or you won't get it.

Also you may want to know if the doctor you are seeing is going to be doing the surgery or a new intern.

Thank you all! I have had my wife email her doctors to see why they want her to stop and to let them know we have heard from lots of Lupus patients that it is the wrong way to go. I will let you know what the result is; she is supposed to stop the meds today.......'

yes definitely check w/ the doctors and ask all and any questions. I had my appendix removed in what was considered an "emergency" because it was on the brink of rupturing. And the only medications that were altered/monitored carefully was coumadin and aspirin because of my bloods tendency to clot. Other than that, all of my other meds for Lupus were resumed immediately

Wingwalker, the CPM machine was a real godsend to me for my first knee surgery, The second one was a different state so a different doctor that does not believe in the machines. It was a much harder recovery due to that and the fact that the surgeon did not give me the necessary pain meds and then went on vacation with no orders. There are so many scenarios that can happen. Also, I did have a nurse on her own decide to take me off of Pred because it made sense to her and I called her on it. I insisted she check with the doctor and he confirmed I was right. After my back surgery I was hospitalized again for a severe infection. The ER doc told me I had to go off the Pred. As soon as I saw a doctor on the floor the next morning who was an infectious disease doc I told her about the Pred and she told me that she was putting me right back on because not all doctors know about Pred and the weaning part of it. Soooo, Brez, maybe she needs to also check with whomever she has for her lupus. Surgeons don't know everything even though some think they do! LOL

Thanks for all the input for me too. I am having a hip done soon and know nothing.

I had to have a colon re section, and my in stay at the hospital was longer, than someone without SLE, and it took much longer to fully recover. I think the best thing you can do is to make sure your surgeon and rheumatologist are on the same page. I am on Prednisone, Imuran and Plaquinal, the surgeon took me off the Imuran and he heightened my Prednisone to 60 mg, then slowly lowered my dose to 10, which is my regular dose. One fear of having surgery is the heightened possibility of infection. Prior to surgery, speak with all your doctors, and make sure they are all aware of what is occurring. Best of luck and good wishes.

I had back surgery for second time. The first surgery took longer to heal even though I was discharged in normal time. I had a second back surgery because the first fusion did not take. My stay should have been two days but I stayed 6. My body was not responding well to this surgery. Everything was off and still today i am still having issues. It sent me into a horrible flare. I only take plaqunil for lupus. I guess there is no real way to determine how the body will respond.

I'm not quite sure what you mean by "stopping the meds." If it's just for surgery, here's what happened with me.

I had a hip replacement in '09. It went awry and had my 5th surgery in Oct 12. The point is not the surgery as much as it is for the pre-op preparation. I was to hold my meds, food and drink 8 hours before surgery. NSAIDS were not an issue since I can't take them and I wasn't on a blood thinner both needed to be stopped two weeks before the operation. As soon as I returned to my room, my meds were restarted and kept on schedule. The hospital staff was more on top of missed doses than I was.

And a couple times (going by my blood work) the anesthesiologist ordered some extra prednisone IV before surgery to prevent any flaring and/or vascular reaction.

You got to hold on.

I have been on Coumadin for 26 yrs and every time I have any type of procedure I have to off of it in advance and give myself lovenox shots before and after. I take 9 meds for various autoimmune. In Dec 08 I had valve replacement surgery, mechanical because I am a lifelong Coumadin patient anyway. I only had to stop anything that thinned my blood and my diovan. I also have rare blood so they had to cross match 15 pints before and I used 13 during surgery. You have to give yourself just a little more time to heal than others. They kept me in ccu on life support in a drug induced coma for 3 days for my body to completely rest. Your wife will be fine. Have faith.