Hubby has lupus

[Angbates]

Hi everyone!

My husband was disagnosed with lupus back in 2000. It caused him to have congestive heart failure. He's been on pred and cumadin since then, but for the last six months he's been extremely sick and found out he has lupus nephritis. He just started chemo this week, cytoxan. We're praying this works out for him. He's to receive treatments once a month for six months and every three months for two years -- or something like that. This is his second day after treatment and he has the nauseousness and tiredness.

Just thought I'd share with you.

Angie

P.S. I have SLE lupus, also, but mine is in remission and has been for the last three years. I have always had to treat with Plaqunil.

[Tom]

:hug:

I hope your hubbys treatment goes well for him and that much better days are coming.

Although Lupus is affecting you both differently, you will be able to understand each other for the most part. My wife is disabled too (Non-Lupus) and we deal as best we can. We both know about the good days and bad helping each other through each day as it comes.

I'm glad you're in remission and hope it continues for a long time. Take care and good luck to you both.

[keebler]

Hi Angie,:hug:

I am sorry to hear about your hubby's troubles. I have heart failure too. (I have sle) I am on a betta blocker, coreg. It has helped me and has gotten my ejection fraction up to 55%. It was 35% when they found it.

I hope all goes well with his treatments for lupus nephritis. :hug:

Glad to hear that your lupus is in remission.

I also have a brother with SLE. We can talk to each other and know what the other one is saying.

Let us know how it is going with you and your hubby. Take care.

Lyn

[LolaLola]

I hope Hubby does well and also that you do not flare.
Will be thinking of you,
X Lola

[Lily]

Hi Angie,

You both have a lot on your plates and it must be incredibly stressful :( I hope your hubby does well on the treatments and they get him in remission :hugbetter: We will be thinking of him.............there is one other guy here who has had that same treatment for Nephritis and is doing very well now. So maybe he will be along to give you his story. If not then you can search his posts......... member name SoCalEric.

Take care both of you, you need to get some rest as well we cant have you flaring too :hugbetter:

love
Lily

[Angbates]

Thank you, everyone:grouphug2:

Lily, I will check out the past posts for SoCalEric. I might be able to find some encouraging information for my husband. He's pretty down right now.


Angie

[SoCalEric]

Hey Angie,
I wont bother with my story as you've probably seen it by now! I posted the jist of it today on the Meds forum in reply to a question about Cytoxan. The first time I underwent the same treatments he's going through, but was able to stop after 10 total as my Doc. saw no reason to continue. I imagine the dose is starting low and increasing with each treatment (first treatment I thought "Hey it's not that bad" THEN the Doc. tells me I get twice as much next time!). My condition the first time was horrible. My pee looked like dark beer (what there was of it, I was retaining water badly), blood press was VERY high. Cytoxan worked wonders, hopefully you husband will have the same luck. I'm also on Coumadin, as I've had troubles with clots (Phlebitis and Pulmonary emboli).
Make very sure your husband drinks LOTS of fluids and pees often afterwards, flush that crap out as soon as possible. Feel free to PM me if you or he has any questions. Keep a positive outlook, I was determined to get though it, and I did, twice!

Eric

[SoCalEric]

Oh yeah, one other thing I forgot to mention. Hopefully his Doc. has warned him, but mine didn't the first time. About a week or two after the chemo your immune system can crash. I had this happen the first time when I had got to a max dose. I caught a cold and with no immune system I got VERY sick. Ended up in the Hospital for a week recieveing IV meds and got a shot in my belly every day to pump my white cells back up (NOT FUN!). It's normal for the white cells to drop very low, it's what the chemo does, but watch out for germs!
I'll be thinking of ya, hope things get better!

Eric

[Angbates]

Hi Eric!

Thanks so much for the information you've given. It sure makes life a lot easier for my husband and myself knowing what to expect. My hubby went to work for the first time yesterday (Monday) and felt great. He had his first treatment last Thursday at 8:00 a.m. and we were done about 1:00 p.m. His first dose was 1000 mgs -- from my understanding.

Also, they did tell us about the low white blood cells, but they told us closer to the end of the month this will happen and to be very careful concerning germs. I'll let him know to be careful about that now. And, yes about the bathroom. He's complaining about urinating every hour to an hour and a half. It's driving him crazy. He's also doing real good on the drinking plenty of fluids.

He has been a little bit more positive once I read him the responses on this site and I went through your older posts and read them to him. I will tell him about your current message once he gets home from work.

I'm just so glad he's finally getting the better and the treatments. He's been sick with the nephritis since last August.

Angie

[SoCalEric]

Glad to Help! I think my max dose was 1800mg the first time around and it was pretty rough. Second time around I got 1500 each time. One kinda funny story, I was retaining water very bad the first time (Doc. hadn't put me on lasix) and after the first Chemo, well the ole Kidneys kinda kicked in. I was peeing my brains out. Couldn't sleep because I had to go constantly. I lost nearly 40lbs in a week (beat THAT Jenny Craig), all water. I had been on a 2 grams of salt a day diet for a few months and had obviously lost weight, but was so full of water I didn't notice the fat was gone till the water was out!
Lupus is one strange monster. My sister also has it, but her troubles are very different from mine. She's also had Chemo, but to treat other troubles not Nephritis. She's had chemo twice, first time didn't do much, second helped her alot.
Best Wishes to both of you, hang in there!
Eric