I originally posted this on the Friends/Family forum but wanted to reach out to a larger group as I am searching for answers. So, for those of you who are living with SLE and may be able to address this, many thanks!
I'm am currently trying to help out a close family friend who is dealing with his wife's SLE. She is currently in the hospital for the third time in less than a month with vasculitis. Although I am well acquainted with SLE from my own dad, he fortunately has never had to deal with vasculitis so this part of the disease is new to me.
I've read up on vasculitis and have a basic understanding but I wondered if any others have dealt with this with their own loved ones. My friend is really falling apart as he is the sole caretaker of his wife. He works full time, is in school and is trying to either manage his wife at home or going to the hospital to visit her. Currently, she is experiencing severe psychiatric symptoms (paranoia, delusions, hallucinations) which cannot be managed at home. Her latest MRI shows that her brain swelling has not subsided any from the original MRI from about a month ago. We try and remain hopeful that each day will be better than the one before.
So, here's my question: Has anyone else dealt with vasculitis and if so could you please share your experience with me? Also, what supports would you suggest for my friend as continues to be the sole caretaker of his wife?
Thanks is advance,
I know that there are several on this forum who have suffered with vasculitis and I do hope that they respond to your request.
You are a very, very good friend to reach out like this in order to help him and to help his wife! I never suffered with vasculitis, but if you do not get responses, I will research and try to find some answers for you!
I wish you and your friend the best. Bless You
Hello, Julie. This is a very difficult situation, because there are different types of vasculitis, and her symptoms suggest she has the most serious form, CNS or cerebral vasculitis, inflammation of the blood vessels in the brain and spinal column. This is a rare complication of SLE, and it requires immediate, very aggressive treatment with high-dose steroids and immunosuppressants, otherwise it can be fatal. This disease can go through a waxing and waning period where the symptoms seem to improve and then worsen, or it can hit suddenly. Either way, it requires long-term treatment, often six months to a year. I know this isn't what you wanted to hear, but your friend may be in for a long-term situation, and his wife may be left with permanent impairments. This is the worst-case situation, but something he has to prepare himself for. He also has to realize that he can't be Superman and try to do everything, he may have to give up some of his obligations, or ask for help. The social worker at the hospital should know if there are any programs to assist him with home care, and he may be eligible to take time off from work under the Family and Medical Leave Act. The employee benefits coordinator where he works should know if he is eligible for FMLA benefits or any employee assistance and counseling benefits. Many larger cities have caretaker support groups and respite care services to assist him. And organizing a network of friends to help him with things like grocery shopping, taking care of the household chores, keeping track of medical expenses, etc. can be a great help to someone in this situation. He may not feel comfortable asking for help. but I am sure he would appreciate it. Any day to day things his friends can take off his hands is one less thing he has to worry about.
Thank you for the thoughtful replies.
I appreciate your honesty and candor MaryC. It is very difficult information to hear, but I think it's better to know what to expect rather than be uninformed and unaware.
Your ideas for support were helpful as well. We have already started putting some of those things in place that you mentioned. (FMLA, caregiver support) I was an employee assistance counselor for many years, so I agree with you on the idea of plugging him into available services. We'll continue to work on identifying those wraparound services.
Two days ago the rheumatologist reduced the steroids and initiated chemotherapy. (Cytoxan) Another indicator of just how serious the situation is presently. We're hopeful that this new approach will begin to make a difference.
I hope at some point I'll be able to post some good news about this situation. In the meantime, thank you and please keep a good thought.
Hi, Julie. It's great that you were an employee assistance counselor - you will know better than anyone how to cut through the red tape and get your friend the time he needs for himself and his wife.
I know Cytoxan sounds like a very scary word, but many lupus patients have taken it successfully. I have lupus with kidney and central nervous system involvement, and I was on cytoxan for a very long time, and will be going back on it again in a month or two when my white cell count builds back up. Although many people don't think of cancer treatments in the context of lupus, one of the side effects of most chemotherapies is that they suppress the immune response. Since the immune response is hyperactive in lupus, the side effect is actually therapeutic for lupus patients. Although the chemotherapy drugs are used in lower doses for lupus than for cancer, they still have many of the same side effects - nausea, vomiting, hair loss, painful ulcers in the mouth and throat, and an increased risk of infection because the medications drop the white blood cell count. With the very strong anti-nausea drugs available know, nausea and vomiting are not as much of a problem as they used to be, and there are also medicines to prevent or reduce the incidence of the other side effects.
Because his wife will be very vulnerable to infection, which is a very real concern in any hospital because of staph infections, your friends needs to be sure that the hospital staff and he personally are taking every precaution against infection. Unfortunately, many hospital staff are careless about handwashing between patients - he needs to make sure that everyone is aware his wife is on cytoxan, and that they are using adequate sterile precautions - washing their hands, using hand sanitizer or wearing sterile gloves, Anyone with a cough, cold, or runny nose should wear a mask. It doesn't hurt to buy a large container of hand sanitizer and leave it sitting on her bedside table to remind people to use it. If his wife has long fingernails, you want to make sure she can't accidentally scratch herself, especially if she is having periods where she isn't aware of what's going on. If you don't want to trim her nails, try cotton beauty gloves.
Cytoxan can cause a severe form of bladder inflammation called hemorrhagic cystitis. So it's important that your friend's wife is able to drink plenty of fluids, or is given those fluids intravenously. If she is prone to urinary tract infections, or isn't able to get enough fluids for any reason, you might tell your friend to ask his wife's doctor about a drug called "mesna", which is given before the cytoxan infusion to protect the bladder. Some oncologists give this drug routinely with cytoxan, not all rheumatologists do.
There are several others on the forum who have been through multiple rounds of cytoxan too, and any of us will be happy to share our experiences - all you have to do is ask. It is a very strong drug, it can have some nasty side effects, but for some of us - it has literally saved our lives. So hold that good thought about the drug. Your friend and his wife are lucky to have a caring and involved friend to help - all of you are in my thoughts and prayers.
Thank you Mary for sharing your own experience and such a wealth of information re: Cytoxan. I can't tell you how valuable your insight was for us. I copied your response and emailed it off to my friend (R.) so he would know what to keep in mind while his wife (E.) is on Cytoxan.
He passes on his heartfelt thanks to you as well.
R. spoke to the doctor yesterday and had a very frank conversation about E.'s current condition and prognosis. Like many serious medical condtions, it is impossible to predict an outcome. However, the doctor was honest about E's chances of recovery and the odds are not great. But, we keep the faith nonetheless.
It's only been a few days, but E. has tolerated the Cytoxan well so far. The doctor told R. that E. would be on this course of treatment for 6 months. I'm guessing that at some point she may have to deal with side effects given the duration of treatment. But, we'll just deal with that when it comes.
Mary, thanks for suggesting I post about Cytoxan. I will do that and see what responses I get from others. Any information we can gather is greatly appreciated.
Also, Mary, many thanks for your overall input. R. and I both appreciate your candor and willingness to share your experience, particularly since you are dealing with your own health issues. I know I'll be posting regularly as we go through this ordeal and it is comforting to know that someone like yourself is so willing to share and offer guidance. We are so grateful.
Wishing you good health,