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Husband is showing signs of lupus -- I'm scared

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Old 08-24-2005, 11:30 AM   #1
Join Date: Aug 2005
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cmoonchild HB User
Husband is showing signs of lupus -- I'm scared

Hi there -- my husband of three years, who will be 33 in October, had a grand mal seizure less than a month ago that resulted in a car accident. He's OK, but he can't drive for awhile. We saw a neurologist, who did some blood work and is saying that it's almost conclusive he has lupus. We have a follow-up appointment with a rheumatologist on August 31. They are doing an EEG and cardiac ultrasound (he is showing signs of vasculitis) next week, an MRI the week after and a spinal tap in October. In the meantime, he developed prostatitis, and I had to take him to the ER with violent chills alternating with a high fever a week ago. He's just getting off a six-day run of Cipro. On top of all this, his blood work is showing high creatinine levels, so he has to have more blood work done tomorrow. I'm scared to death, and part of me wants a diagnosis; part of me is terrified what our lives will be like if he has lupus. It seems from my research that he possibly has systemic lupus, and it's affecting his central nervous system (the seizures) and his kidneys. What do I do? Does anyone have any words of advice?

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Old 08-24-2005, 01:40 PM   #2
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Re: Husband is showing signs of lupus -- I'm scared

Moonchild, Being a very newly diagnosed with lupus person my first reaction is to say calm down. Lupus is not a death sentence it is a disease. From all I have read so far it is highly manageable with the proper Medication. They say there will be good days and bad days. I personally am waiting for the good ones. I have been sick now for over 3 yrs. I understand how worried you are for him but YOU must remain strong. Search for that strenght any where you might find it. This is an excellent place to come for support. Reading as you have is also an excellent way to stay educated about everything. The fear of not knowing just about killed me. I might add that taking a very active role in this diagonses is important too, be vigalint. Ask lots of questions and demand answers. May GOD bless both of you as you journey down this Long winding road.

Old 08-24-2005, 02:16 PM   #3
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Re: Husband is showing signs of lupus -- I'm scared

Dear cmoon child,

Two harcovers that discuss the very wide range of problems seen in lupus are found in most libraries & bookstores. One is by Dr. Daniel Wallace, the other by Dr. Robert Lahita. You could call your library & ask them to hold either or both, for you or a friend to pick up.

Lupus and vasculitis can be different problems. i.e., I believe someone can have vasculitis with or without lupus being the driving force. Knowing whether lupus is behind it all, vs. vasculitis, vs. both may (or may not) affect what meds, protocols, etc. are followed---I'm not sure if & how it would. So you may want to do some reading also on vasculitis.

You both have my thoughts and my prayers. Sincerely and with my best wishes, Vee

Old 08-30-2005, 11:41 AM   #4
Join Date: Aug 2005
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cmoonchild HB User
Re: Husband is showing signs of lupus -- I'm scared

Hi everyone --

My husband was hospitalized with a temp of 105 on Saturday. They worked him up, and it was pretty much confirmed he has lupus with CNS involvement. He is in the critical care unit now, and they have him stabilized with steroids and some Zithromax. His hematocrit got down almost to transfusion levels because he's in a flare. He's much better today as compared to yesterday. Is there anything I should be prepared for when he finally comes home? I miss having him there, but I'm apprehensive about him getting sick again.

Old 08-30-2005, 05:21 PM   #5
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Re: Husband is showing signs of lupus -- I'm scared

Hello cmoonchild,

I am so sorry that your husband has been taken into hospital, but he is in the best place to ensure that he has the treatment he so obviously needs. The antiobiotic he is taking - Zithromax - is listed as helping with a lot of symptoms he may have at this time. It is prescribed for adults to treat certain mild to moderate skin infections; upper and lower respiratory tract infections, including pharyngitis (strep throat), tonsillitis, worsening of chronic obstructive pulmonary disease, and pneumonia.

The only thing to do when he gets home is to make sure he doesn't get fatigued in any way and he takes it easy. Lupus can be a multi symptom type of illness to some of us, and your husband must make sure that anything that doesn't feel right to him is reported without delay to the doctor. No need for panic, but don't let him go for too long before he seeks treatment, especially after his hospitalisation.

Until all of his medications and treatment are sorted out, he will no doubt be feeling unwell, but with rest and recuperation he will get better each day. The support you are so obviously giving him is going to go a long way to making him come out on top again. This is one of the best medicines going, love and support from a partner.

In the meantime, keep on coming back with any questions or just if you need to chat about anything.

Take care.

I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 08-30-2005 at 05:23 PM.

Old 08-30-2005, 07:47 PM   #6
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Re: Husband is showing signs of lupus -- I'm scared

Hi cmoonchild,

So sorry this is so scary. As has been said, it's not the end.

If you've read many of the posts here, you'll have read my two points about lupus because I think they convey helpful information that make life with lupus easier.

* avoid the sunshine because it makes lupus symptoms worse for almost everyone with lupus. It's okay to be outdoors when your shadow is longer than you are tall. Don't plan a day at the beach.

* be aware that many lupus patients become allergic to things they were never allergic to before. The most common drug lupus patients become allergic to is sulfa and any drug with a form of sulfa in it (my problem came with a reaction to Celebrex as it has a sulfonamide in its chemical makeup). I had never been allergic to anything up until then.

Along with that is just understand that your husband will become really tired sooner than he used to because fatigue is one of the annoyances of lupus. A nap helps.

I was diagnosed in 1999.

Wishing you both well - Barbara

Old 09-01-2005, 09:33 AM   #7
Join Date: Aug 2005
Posts: 4
cmoonchild HB User
Re: Husband is showing signs of lupus -- I'm scared

Thanks to all for your good wishes and thoughts. My husband was discharged from the hospital today and will follow up with a rheumatologist for a treatment plan, as well as continue to take the steroids for the time being and Dilantin. The docs suspect that Trileptal was exacerbating his lupus. It's been a very scary month, but everyone's support, as well as educating myself about lupus, has helped a lot. Thanks again.

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