Hello everyone! I do not have Lupus but my sister does. She has had it for years and spent more years than that just getting diagnosed. They tested her for many other things before finally getting the diagnosis. But anyway the reason I am here is that I want to try to help her in any way that I can. I want to find out from other people with this illness how they feel. My sister is constantly sick. She sleeps all the time, does not get off of the couch. Exercise...forget it. She constantly feels bad. I feel so bad for her but it is so frustrating hearing her complain constantly. She is on steroids and plaquinil and has a bunch of other meds but i don't know if they are lupus related. Does lupus ever get controlled. I am wondering if she should try other doctors. I just feel like I can't help her and I am tired of seeing her so depressed and unhappy!! Well thanks for letting me vent to you all. i will be surfing this site and looking for help. Thanks much
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Welcome!
What a great sister you are, you will find answers to your questions and plenty of friendly support!
I might suggest that you go into chat if you can and meet a few members on a more personal level.
It would be really great if you could get your sister to join you here on the site as well, she may be feeling isolated and sacred herself and we may be able to help her some to.
Please ask any questions you have, I am sure someone will be able to help you.
Lupus is a difficult disease, not just to diagnose, but also to treat. Do you know if your sister is seeing a Rhumetologist? If not, does the dr she is seeing know about lupus? Many times it will take a cocktaol of meds to help us feel better, and somedays even those just don't seem like enough.
I believe that your sister will need to come to terms with her diagnosis and learn what her limitations are, however once they get her medications in order she should be able to lead a fairly normal life, if she is careful of the sun and overdoing!
I am proud of what you are doing, and even if it may seem like your sister doen't appreciate it, I am sure she does!
Welcome, please feel free to poke about and ask any questions you want.
Stephanie
What a great sister you are, you will find answers to your questions and plenty of friendly support!
I might suggest that you go into chat if you can and meet a few members on a more personal level.
It would be really great if you could get your sister to join you here on the site as well, she may be feeling isolated and sacred herself and we may be able to help her some to.
Please ask any questions you have, I am sure someone will be able to help you.
Lupus is a difficult disease, not just to diagnose, but also to treat. Do you know if your sister is seeing a Rhumetologist? If not, does the dr she is seeing know about lupus? Many times it will take a cocktaol of meds to help us feel better, and somedays even those just don't seem like enough.
I believe that your sister will need to come to terms with her diagnosis and learn what her limitations are, however once they get her medications in order she should be able to lead a fairly normal life, if she is careful of the sun and overdoing!
I am proud of what you are doing, and even if it may seem like your sister doen't appreciate it, I am sure she does!
Welcome, please feel free to poke about and ask any questions you want.
Stephanie
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11,410 Posts
Hi,
Welcome to the site.
It is great you are coming here seeking help for your sister.
Having lupus is a roller coaster ride of emotions. I am sorry to read that your sister is not doing well.
Depression goes along with lupus. Dealing with a chronic illness and knowing you won't get better is hard to deal with.
Getting on the right medications is the key. Waiting for the meds to kick in is hard to do. Contacting your doctor when you have new symptoms is a good idea. If we don't tell them what is going on they won't know how to treat us. I had my husband point that out to me after an appointment.
It is good to get a second opinion if you feel you are not getting the right treatment. Many of us have seen several rhuemys before we find the right one.
I know how frustrating it is seeing a family member deal with lupus and you feel totally helpless.:hug: My brother had lupus a few years before I was diagnosed with sle.
Encourage your sister to join us here on the lupus site.
Take care,
Lyn
Welcome to the site.
It is great you are coming here seeking help for your sister.
Having lupus is a roller coaster ride of emotions. I am sorry to read that your sister is not doing well.
Depression goes along with lupus. Dealing with a chronic illness and knowing you won't get better is hard to deal with.
Getting on the right medications is the key. Waiting for the meds to kick in is hard to do. Contacting your doctor when you have new symptoms is a good idea. If we don't tell them what is going on they won't know how to treat us. I had my husband point that out to me after an appointment.
It is good to get a second opinion if you feel you are not getting the right treatment. Many of us have seen several rhuemys before we find the right one.
I know how frustrating it is seeing a family member deal with lupus and you feel totally helpless.:hug: My brother had lupus a few years before I was diagnosed with sle.
Encourage your sister to join us here on the lupus site.
Take care,
Lyn
Hello and welcome!
Lupus can improve... and I think that if there are no results over a period of a few years and the doctor hasn't had any new ideas for treatment then a second opinion would be a very good idea. Do you know how your sister is affected? Have her kidneys been damaged or are her symptoms primarily joint pain and fatigue? These are important pieces of information for us to make suggestions. Some lupus patients will require more medication that Plaquenil and prednisone - often methotrexate or Imuran will be added to try to get people a better quality of life AND to lower the prednisone dosage.
Depression can result from living with constant pain and fatigue as a consequence... or it can actually be a direct symptom of lupus affecting the brain. Many here have found antidepressant medication very helpful, and I have personally found cognitive behavioral therapy helpful for learning to live with chronic disease.
Best wishes to your sister - the best thing you can do is listen to her if she wants to talk and suggest she seek out a second opinion I think...
Lupus can improve... and I think that if there are no results over a period of a few years and the doctor hasn't had any new ideas for treatment then a second opinion would be a very good idea. Do you know how your sister is affected? Have her kidneys been damaged or are her symptoms primarily joint pain and fatigue? These are important pieces of information for us to make suggestions. Some lupus patients will require more medication that Plaquenil and prednisone - often methotrexate or Imuran will be added to try to get people a better quality of life AND to lower the prednisone dosage.
Depression can result from living with constant pain and fatigue as a consequence... or it can actually be a direct symptom of lupus affecting the brain. Many here have found antidepressant medication very helpful, and I have personally found cognitive behavioral therapy helpful for learning to live with chronic disease.
Best wishes to your sister - the best thing you can do is listen to her if she wants to talk and suggest she seek out a second opinion I think...
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6,152 Posts
Hi there and welcome to the Forum
Im sorry to hear your sister is so poorly. It sounds like she has been through a very rough number of years with her health issues :worried:
You mentioned that she is on a 'bunch of other meds' but you werent sure if they were Lupus related. Could you ask her what the meds are for? I think if you get more of an understanding of what she is dealing with you will be in a better position to be able to help her.
I am also on Plaquenil and Steroids and a 'bunch of other meds' but the other meds are prescribed because of all of the connecting issues that Lupus has presented me with. I am on meds for high blood pressure, acid reflux, inflammation, under active thyroid, pain management, calcium supplements and bone mass enhancement medications to counteract the effects of the steroids on bones. There are indeed other meds whichI have been prescribed but dont take because the side effects are too hard to live with. So you can see that although I am only strictly on two medications which directly deal with the Lupus issues, the other meds are necessary to treat symptoms which have come along with it.
It is true that Lupus can get controlled for a lot of people. For others it can be a constant battle of trying to keep symptoms under control. However in my own experience 'control' means being able to deal with the symptoms and function 'relatively' normally. For example I cannot work full time anymore, I need much more rest than lots of people my age, I am very unfit and any form of exercise whacks me out completely or has me in terrible pain from joint inflammation.
The important thing if you want to help your sister is to try and find out how her Lupus affects her and from there try and work out what is possible. I agree with the others that she may need another opinion or a review of her treatment. She may also need to see someone for depression if thats approrpriate.
Dont go 'gung ho' at trying to help to make her 'better'. Tell her that you want to be able to support her and ask her what she thinks would help. It might be help with finding another doctor, if thats whats needed, or any number of other smaller things that might help make her situation and yours more bearable.
The best of luck and stay in touch
Joan:rose:
Im sorry to hear your sister is so poorly. It sounds like she has been through a very rough number of years with her health issues :worried:
You mentioned that she is on a 'bunch of other meds' but you werent sure if they were Lupus related. Could you ask her what the meds are for? I think if you get more of an understanding of what she is dealing with you will be in a better position to be able to help her.
I am also on Plaquenil and Steroids and a 'bunch of other meds' but the other meds are prescribed because of all of the connecting issues that Lupus has presented me with. I am on meds for high blood pressure, acid reflux, inflammation, under active thyroid, pain management, calcium supplements and bone mass enhancement medications to counteract the effects of the steroids on bones. There are indeed other meds whichI have been prescribed but dont take because the side effects are too hard to live with. So you can see that although I am only strictly on two medications which directly deal with the Lupus issues, the other meds are necessary to treat symptoms which have come along with it.
It is true that Lupus can get controlled for a lot of people. For others it can be a constant battle of trying to keep symptoms under control. However in my own experience 'control' means being able to deal with the symptoms and function 'relatively' normally. For example I cannot work full time anymore, I need much more rest than lots of people my age, I am very unfit and any form of exercise whacks me out completely or has me in terrible pain from joint inflammation.
The important thing if you want to help your sister is to try and find out how her Lupus affects her and from there try and work out what is possible. I agree with the others that she may need another opinion or a review of her treatment. She may also need to see someone for depression if thats approrpriate.
Dont go 'gung ho' at trying to help to make her 'better'. Tell her that you want to be able to support her and ask her what she thinks would help. It might be help with finding another doctor, if thats whats needed, or any number of other smaller things that might help make her situation and yours more bearable.
The best of luck and stay in touch
Joan:rose:
Hi,
You're already helping your sister by supporting her. I dont know what i would have done without my families support,especially my husband. I have been recently diagnosed with SLE and i have to say Im still getting my head round it. Steroids can cause terrible mood swings and also make you feel very very low. Some days i dont seem to stop crying! I have to say that exercise actually makes me feel better. The thought of doing it doesnt! Going for a walk really lifts my spirits some days, it also helps with the tiredness. It may be worth a try? Everyone is different though.
Anyway, like i said I've only been diagnosed recently there are people here who have lived with the illness for years and are able to give lots of helpful advice. Its a great site with loads of information.
Your sister is lucky to have you. Hope you get the answers you need
Take care
Donut
You're already helping your sister by supporting her. I dont know what i would have done without my families support,especially my husband. I have been recently diagnosed with SLE and i have to say Im still getting my head round it. Steroids can cause terrible mood swings and also make you feel very very low. Some days i dont seem to stop crying! I have to say that exercise actually makes me feel better. The thought of doing it doesnt! Going for a walk really lifts my spirits some days, it also helps with the tiredness. It may be worth a try? Everyone is different though.
Anyway, like i said I've only been diagnosed recently there are people here who have lived with the illness for years and are able to give lots of helpful advice. Its a great site with loads of information.
Your sister is lucky to have you. Hope you get the answers you need
Take care
Donut
Hi there,
You are a awesome sister and so supportive too. I think it is great that you want to learn about this disease and understand it better. Your sister is lucky to have you. Maybe she would like to join too, so much information and support here too.
Sure hope to get to know better. Stick around and search the board. You will be amazed at all of the valuable information there is here if you read.
Take care of yourself.:wink2:
You are a awesome sister and so supportive too. I think it is great that you want to learn about this disease and understand it better. Your sister is lucky to have you. Maybe she would like to join too, so much information and support here too.
Sure hope to get to know better. Stick around and search the board. You will be amazed at all of the valuable information there is here if you read.
Take care of yourself.:wink2:
Thank You very much! Most of my sis's symptoms are muscle and joint related. She does complain of a sharp shooting pain in her head. Anyone ever had that? So far her kidneys are unaffected and she was recently hospitalized for fluid in her lungs which the drs did not call congestive heart failure. She is on Zoloft for depression although I dont think it is working. As far as the other meds. I'll have to find out. So far she has only seen one Rheumatologist, Nephrologist, Family doc, Neurologist etc. I doubt she'll go for a second opinion because she works nights (another mistake) and it's hard enough to get her to go to these. I do REALLY appreciate all of the responses It feels so good to be able to talk to people with the same issues. I feel like I am in a box when I only have my sisters view of the disease. Patti
Hi Patti and welcome,
Did the Neurologist run tests on her and try and find out what the sharp shooting pains in her head were? There are several things it could have been, some of them fairly benign but yet the pain needs treating, others more serious especially if there were other neurological symptoms.
She sounds like she has been quite ill with different manifestations of the disease The fluid around her lungs would have been a pleural effusion which is a complication of pleuritis (inflammation of the lining around the lungs). It can be very painful and debhilitating.
I too would be interested in what medication regime she is on and whether her disease is being adequately treated.
You are a good sister to be so concerned and care about her welfare.
love
Lily
Did the Neurologist run tests on her and try and find out what the sharp shooting pains in her head were? There are several things it could have been, some of them fairly benign but yet the pain needs treating, others more serious especially if there were other neurological symptoms.
She sounds like she has been quite ill with different manifestations of the disease
The fluid around her lungs would have been a pleural effusion which is a complication of pleuritis (inflammation of the lining around the lungs). It can be very painful and debhilitating. I too would be interested in what medication regime she is on and whether her disease is being adequately treated.
You are a good sister to be so concerned and care about her welfare.
love
Lily
PC,
Hi and welcome to the site. I find it so encouraging that a family member is looking for answers to help a loved one. You are right lupus can really make you very very tired and often you do feel very sick. I know it is hard to see your sister like this and it is harder to be like this just know that fact please. It sounds like you want to try and help her have as normal a life as she can. If she is unhappy then it is worth looking into about some testing for depression and treatment if that is one of the problems. It is easy to be depressed when you have lupus and not even know that you have it. Be there for her when she needs you and try to talk to her at least once a week if not more. It is hard to advise those that want to help, it is a new road for me. Most of the time I am advising lupies how to deal with family members that just think they are fine and nothing but lazy. Yes there are people like that out there. I hope you the best with helping your sister and I will help as much as I can hope to see you in the chat room sometime. Be well.
Hi and welcome to the site. I find it so encouraging that a family member is looking for answers to help a loved one. You are right lupus can really make you very very tired and often you do feel very sick. I know it is hard to see your sister like this and it is harder to be like this just know that fact please. It sounds like you want to try and help her have as normal a life as she can. If she is unhappy then it is worth looking into about some testing for depression and treatment if that is one of the problems. It is easy to be depressed when you have lupus and not even know that you have it. Be there for her when she needs you and try to talk to her at least once a week if not more. It is hard to advise those that want to help, it is a new road for me. Most of the time I am advising lupies how to deal with family members that just think they are fine and nothing but lazy. Yes there are people like that out there. I hope you the best with helping your sister and I will help as much as I can hope to see you in the chat room sometime. Be well.
Hi pc,
I guess the best advice to give is if you think her problems could be addressed better then you could help her seek out another rheumatologist. Another opinion never hurt anyone and if you can find someone who deals with lupus all the time it might be a good start. You could ask on here in our Find A Doctor Section and see if anyone here is in your area and who they see.
Your sister's case is fairly complicated with the breast cancer. If it wasn't for that I would suggest she may do better on lowering the Prednisone after some months on Immunosuppressants. But they may be very wary of giving her those because of the breast cancer I'm no doc, it's just my assumption from what I know about the drugs.
Tamoxifen can cause depression and forgetfullness in some. Lupus can do the same It could be that they need to re-address this with her. I've no idea whether her lying around with little energy has to do with uncontrolled Lupus or as I am sure you realise it can be a manifestation of depression.
love
Lily
I guess the best advice to give is if you think her problems could be addressed better then you could help her seek out another rheumatologist. Another opinion never hurt anyone and if you can find someone who deals with lupus all the time it might be a good start. You could ask on here in our Find A Doctor Section and see if anyone here is in your area and who they see.
Your sister's case is fairly complicated with the breast cancer. If it wasn't for that I would suggest she may do better on lowering the Prednisone after some months on Immunosuppressants. But they may be very wary of giving her those because of the breast cancer
I'm no doc, it's just my assumption from what I know about the drugs. Tamoxifen can cause depression and forgetfullness in some. Lupus can do the same
It could be that they need to re-address this with her. I've no idea whether her lying around with little energy has to do with uncontrolled Lupus or as I am sure you realise it can be a manifestation of depression. love
Lily
Yes I know that it could very well be a depression, she does have alot to be depressed about. I have mentioned this site to her and she seemed very interested and excited to talk to different people with the disease, the only problem is that she needs to get a new computer. So as soon as she does that I'm sure you guys will be meeting her and hearing first hand what kind of problems she is having. Thanks again for all of your wonderful care and concern , and advice. Hope to talk more soon. Patti
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