My husband has just been diagnosed with Lupus. I am very worried and it all seems to be a very serious complicated condition. I am very scared of what treatment he is having as he says it all just seems like big words. He has quite severe kidney involvement and is awaiting results of a biopsy. He has already had 3 IV bags of steriods which havn't seemed to have much effect on reducing something in his blood which was 80, then went to 160 and then to 200 (I'm not sure what this is) but it was indicating that inflammation in his kidneys was very high. He is now undergoing Chemotherapy. I'm so worried can anyone talk to me about this, has anyone been through the same symptoms? He has headaches, muscle aches, fatigue and slight nausea.
My husband has just been diagnosed..help!
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Welcome Jan!
I wanted to say hello and that I'm really sorry about how things are with your husband and I'm sure you are finding things very difficult too!
I'm not able to offer any advice on the issues he has with Lupus, but I'm positive someone else will come along shortly to give you some more help!
This is a very friendly, informative site and so many people have many helpful suggestions!
Take care for now and ask as many things as you like!
Lesley
I wanted to say hello and that I'm really sorry about how things are with your husband and I'm sure you are finding things very difficult too!
I'm not able to offer any advice on the issues he has with Lupus, but I'm positive someone else will come along shortly to give you some more help!
This is a very friendly, informative site and so many people have many helpful suggestions!
Take care for now and ask as many things as you like!
Lesley
Hi Jan,
This disease hits hard when it is first diagnosed. I'm sorry you and your family have to go through all of this,, but i'm am very glad to hear that your husband is getting proper care right now.
Right now he is in the safest place with the doctors looking after him. It seems like the men get more of the kidney involvment at first. But when the doctors get a handle on what exactly is going on things tend to level off.
I have had lupus since a teenager but 2 yrs ago it just about crippled me. That is when the doctors took notice and diagnosed me. Now I am on a bunch of meds and am rehabilitating my entire body.
To look at me you would not know i was sick. So, I am going to pray for you and your husband, in that he will get proper care and level off so he can start to rehabilitate.
Just stay strong,, give him lots of love,, there is a new life for both of you ahead. Don't forget to take care of yourself. You will be no good to him if you are not in good health. Relax at night in hot tub of bubble water and get plenty of sleep. I know that sounds hard to do, but it is very important that your husband sees you in good standing. He will see you as his motivation to get better.
This disease hits hard when it is first diagnosed. I'm sorry you and your family have to go through all of this,, but i'm am very glad to hear that your husband is getting proper care right now.
Right now he is in the safest place with the doctors looking after him. It seems like the men get more of the kidney involvment at first. But when the doctors get a handle on what exactly is going on things tend to level off.
I have had lupus since a teenager but 2 yrs ago it just about crippled me. That is when the doctors took notice and diagnosed me. Now I am on a bunch of meds and am rehabilitating my entire body.
To look at me you would not know i was sick. So, I am going to pray for you and your husband, in that he will get proper care and level off so he can start to rehabilitate.
Just stay strong,, give him lots of love,, there is a new life for both of you ahead. Don't forget to take care of yourself. You will be no good to him if you are not in good health. Relax at night in hot tub of bubble water and get plenty of sleep. I know that sounds hard to do, but it is very important that your husband sees you in good standing. He will see you as his motivation to get better.
Thank you
Thank you for you support and response. I feel so alone at the moment. My husband has never been ill and worked really hard all his life and this is repayment!! The way his doctor is working on him so quickly frightens me. Im not sure on kidney involvement and I'm already thinking the worst. Sorry to sound like this. Jan.
Thank you for you support and response. I feel so alone at the moment. My husband has never been ill and worked really hard all his life and this is repayment!! The way his doctor is working on him so quickly frightens me. Im not sure on kidney involvement and I'm already thinking the worst. Sorry to sound like this. Jan.
Hi Jan,
Sadie said the right thing,.........your husband is in the right place for great care. Where do you live? I am in the US in New Jersey.
I am curious has your husband been having any other health issues lately? Joint pain or swelling, muscle aches, anything? Has he been treated for any of this in the recent past?
It does seem like men get hit harder in the beginning but the medicine will work in no time and his numbers will level off.
I know your worried and I understand your concerns but know that I am confident that your dh will be ok. Let the doctors help him and the meds will follow.
Read and learn all you can about Lupus. Knowledge is Power. Come here with questions or for support. This is a great group of people who really care and a lot of them are extremely knowledgeable about Lupus.
I hope things go ok and please let us know how you make out.
Keep us posted please.:wink2:
Sadie said the right thing,.........your husband is in the right place for great care. Where do you live? I am in the US in New Jersey.
I am curious has your husband been having any other health issues lately? Joint pain or swelling, muscle aches, anything? Has he been treated for any of this in the recent past?
It does seem like men get hit harder in the beginning but the medicine will work in no time and his numbers will level off.
I know your worried and I understand your concerns but know that I am confident that your dh will be ok. Let the doctors help him and the meds will follow.
Read and learn all you can about Lupus. Knowledge is Power. Come here with questions or for support. This is a great group of people who really care and a lot of them are extremely knowledgeable about Lupus.
I hope things go ok and please let us know how you make out.
Keep us posted please.:wink2:
Hello and Welcome but very sorry for what brings you here.
I just want to let you know that we have had a few male members who were in much the same position as your husband with severe kidney involvement at diagnosis and underwent chemo and were brought back to complete remission for years! Hopefully some of those members will come along soon.
I would also advise you to check out the Men with Lupus section as some of their stories are in there. There is definitely hope for quick and in some cases complete improvement.
Best wishes to you and your husband...
I just want to let you know that we have had a few male members who were in much the same position as your husband with severe kidney involvement at diagnosis and underwent chemo and were brought back to complete remission for years! Hopefully some of those members will come along soon.
I would also advise you to check out the Men with Lupus section as some of their stories are in there. There is definitely hope for quick and in some cases complete improvement.
Best wishes to you and your husband...
Joined
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10,193 Posts
Hi Jan,
Welcome to the lupus site.
I am sorry to hear that your husband has been diagnosed with lupus.
I know it is such a roller coaster ride of emotions. My husband went threw them right along with me when I was diagnosed with SLE.
It sounds like his doctor is good. Once you get on the right mix of meds, it helps.
Fatigued is one that we all have to deal with. You have to learn to listen to your body. When you get tired lay down and take a break. Pushing yourself will only result in more fatigue and pain. I plan my days if I know something is going on that I want to do. I get lots of rest before that day.
Please remember to take care of yourself and tell your husband hi and he is welcome to join the lupus site too.
Lyn
Welcome to the lupus site.
I am sorry to hear that your husband has been diagnosed with lupus.
I know it is such a roller coaster ride of emotions. My husband went threw them right along with me when I was diagnosed with SLE.
It sounds like his doctor is good. Once you get on the right mix of meds, it helps.
Fatigued is one that we all have to deal with. You have to learn to listen to your body. When you get tired lay down and take a break. Pushing yourself will only result in more fatigue and pain. I plan my days if I know something is going on that I want to do. I get lots of rest before that day.
Please remember to take care of yourself and tell your husband hi and he is welcome to join the lupus site too.
Lyn
Dear Jan, Welcome here. Post anytime, we are all here for you both.
Could I just say one thing? When you are learning about Lupus please do not look at old textbooks or old info on the internet. The outlook has improved a lot in recent years, and if you look at old or unreliable info you will scare yourself to pieces as it is unnecessarily gloomy.
x Lola
Could I just say one thing? When you are learning about Lupus please do not look at old textbooks or old info on the internet. The outlook has improved a lot in recent years, and if you look at old or unreliable info you will scare yourself to pieces as it is unnecessarily gloomy.
x Lola
Hi Jan.
I am sorry that your husband is not feeling well right now and it seems that this is a shock to the both of you. I agree with the others that he is in the right hands. It is very important for you and your husband to be informed by the doctors what is going on, making you fully understand, what the treatment options are, what the outcomes are, etc. etc.
I know that when you are in a panic, you sort of let the doctors take control and sometimes we don't ask the questions and feel uncertain of what happened or took place.
Ask for some with his doctor, write down all of your questions and go over them with the doctor. This will also give you a sense of feeling and comfort about the doctors treating your husband.
Knowing the facts about the disease, the treatment options available, and having support does make a difference along with excellent communication with his doctors.
I hope that your husband reacts to the treatment successfully and I will say a prayer for him too.
I am sorry that your husband is not feeling well right now and it seems that this is a shock to the both of you. I agree with the others that he is in the right hands. It is very important for you and your husband to be informed by the doctors what is going on, making you fully understand, what the treatment options are, what the outcomes are, etc. etc.
I know that when you are in a panic, you sort of let the doctors take control and sometimes we don't ask the questions and feel uncertain of what happened or took place.
Ask for some with his doctor, write down all of your questions and go over them with the doctor. This will also give you a sense of feeling and comfort about the doctors treating your husband.
Knowing the facts about the disease, the treatment options available, and having support does make a difference along with excellent communication with his doctors.
I hope that your husband reacts to the treatment successfully and I will say a prayer for him too.
Hi Jan,
I am fairly newly diagnosed as well but female and 21. Lupus can alter a lot of peoples lives and the best thing for your husband right now is the family he has understanding him and supporting him. Try not to treat him too differently though - i found that made me feel "different" which wasn't a nice feeling.
He is in the best place and i'm sure the doctors who are working on him quickly are doing so so that they can get the right drugs to him - once they have this sorted it will be easier but the first bit is finding what works for him.
Best of luck!
Holly
I am fairly newly diagnosed as well but female and 21. Lupus can alter a lot of peoples lives and the best thing for your husband right now is the family he has understanding him and supporting him. Try not to treat him too differently though - i found that made me feel "different" which wasn't a nice feeling.
He is in the best place and i'm sure the doctors who are working on him quickly are doing so so that they can get the right drugs to him - once they have this sorted it will be easier but the first bit is finding what works for him.
Best of luck!
Holly
Hi Jan,
Was dx about 10 years ago. With most people after the doc's get the disease under control your husband will be put on numerous drugs ( I call it the magic cocktail ...we are all different in which drugs work best) and will probably go through alot of testing. Once the drugs start to work about 90 percent of people go on to live a relatively normal life. His symptoms (except the kidney involvement) are very normal. With out the name of the blood work I can't help you. Read all the info you can about the disease and educate yourself so you can talk to doctors more intellegently. Never start dxing him though..you will just drive yourself nuts and worry for no reason.
As the others have said he is in the best place. Also take care of yourself. There is so much info on this site and the people here have so much knowlege and are so willing to help. And as recommened by others check out the section..Men with lupus. I have not been on for awhile but when I was DX'd chat helped me out alot. There also may be a lupus support group close to you where you can talk to others that have lupus or have loved ones with lupus.
I will keep you and your husband in my prayers.
Elaine
Was dx about 10 years ago. With most people after the doc's get the disease under control your husband will be put on numerous drugs ( I call it the magic cocktail ...we are all different in which drugs work best) and will probably go through alot of testing. Once the drugs start to work about 90 percent of people go on to live a relatively normal life. His symptoms (except the kidney involvement) are very normal. With out the name of the blood work I can't help you. Read all the info you can about the disease and educate yourself so you can talk to doctors more intellegently. Never start dxing him though..you will just drive yourself nuts and worry for no reason.
As the others have said he is in the best place. Also take care of yourself. There is so much info on this site and the people here have so much knowlege and are so willing to help. And as recommened by others check out the section..Men with lupus. I have not been on for awhile but when I was DX'd chat helped me out alot. There also may be a lupus support group close to you where you can talk to others that have lupus or have loved ones with lupus.
I will keep you and your husband in my prayers.
Elaine
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