I just found out today that my father has Lupus. In the past I've heard of it, but no idea wat it actually is. He has one spot on his lip and some small ones in het mouth. On google I found out that it's like MC an auto immune disorder and more or less the same range of medication that is used for IBD's is used for Lupus. My father also had another auto immune disease: alopecia areata. For those who have never heard of this, it means something as locally loosing your hair, what can grow back or not. Not only on your head but also things like eye brows. My father has been bold for years, but not the typical male boldness, but because of this disease (it looks a bit like somebody who had a chemo and also he has no eye brows anymore)
Why this information. Well since I have my flare up of MC, it made me think, no one in my family, as far as I know have of had an IBD or celiac. But my father and I seem to share a genetic predisposition for auto immune diseases. Do other board members here recognize that. Other relatives with other auto immune diseases?
Also are here more people with Lupus or with knowledge of lupus. I just checked some random websites and saw that high blood pressure can be a sign of lupus (or that it comes along with lupus). My father has since a couple of years high blood pressure, what is well controlled with medication. It's just wondering.
What also surprizes me, when I looked up the information about lupus, normally you get it before 40, it's rarely to get it at older age, and it affect 8 times more women than men. But my father is 75. Probably the exception of the rule.
Another reason why it bothers me is, I have the idea that my father having lupus has to do with my movement to Jordan. I know he doesn't like it at all, me being so far away. Only he never express these things or talks about it. He keeps inside. Almost 20 years ago, in our family we had great difficulties with my sister who had a mental breakdown with huge troubles. Soon after that my father started loosing his hair. And now this, me being in Jordan and quite determent tot stay here and he develops a new auto immune disease.
I know once you are 43 years old, it is time to live your own life and you can't stay close to your parents to please them. Also I know that I am not responsible for my fathers health and this is his choice of dealing with emotions this way. And guilt is a useless emotion, that won't do me and won't do him good. But it does bother me, knowing that my actions affects his health. Because I care about my parents, I care about my father. But I also want to live my own life and don't want to feel responsible for his health and don't see it as my life task to make him and my mother happy. It's not that I want to do things on purpose to make them unhappy.
sigh, really I don't know what to do with this.
my father has lupus
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FYI (Not saying this is the case with your father)
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
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barbaranoela
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Harma-----my girlfriends daughter was diagnosed --with LUPUS many years ago====she had just started college and soon she became totally xhausted---sleeping etc.
The family figured she was beat due to all the school work but upon having a blood work up --LUPUS--was the culprit and they started her on Prednizone---she seemed to do OK---
tis been many years since seeing them so I cannot relate any further medications--
I know she was told---*no children---but she did have 3----and she still was ok-
I know this doesnt give U much info--but I gather any little bit is some help==oh plus she didnt have any sores-
Barbara
The family figured she was beat due to all the school work but upon having a blood work up --LUPUS--was the culprit and they started her on Prednizone---she seemed to do OK---
tis been many years since seeing them so I cannot relate any further medications--
I know she was told---*no children---but she did have 3----and she still was ok-
I know this doesnt give U much info--but I gather any little bit is some help==oh plus she didnt have any sores-
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Hi Harma,
I'm sorry to hear about your dad. It's difficult when parents have health issues, particularly when you are not close by. Maybe my experience can help a little.
My dad is 83 and was diagnosed with discoid lupus about 20 years ago. Following his diagnosis he experienced skin involvement only, for several years. But, it was severe skin involvement with lesions over his entire trunk and arms. Like many chronic conditions the symptoms would wax and wane even with his being a very compliant patient. He went off and on steroids for years trying to get the symptoms under control. Eventually, he started experiencing systemic issues including joint pain, kidney issues and ITP (idiopathic thrombocytopenic purpura is a bleeding disorder in which the immune system destroys platelets), which put him in the hospital. He has had quite a difficult time with lupus related issues over the years.
With your dad, I would determine if he has been diagnosed with discoid (skin), systemic (organ involvement) or subacute cutaneous lupus erythematosus (mixed) lupus. That answer will determine the course of the illness. However, like my own dad, skin involvement can lead to systemic involvement, which of course can be very serious. This is one of the reasons why it is critical that someone with lupus be followed closely by a well qualified rheumatologist. A lupus patient (particularly one who is elderly) needs to be evaluated on a regular basis whether they are symptomatic at the time or not. Skin needs to be checked carefully and blood work needs to be run on a regular basis. The blood work for rheumatology issues is extensive which is another reason your dad needs to see a good rheumatologist. I would not trust a GP to know all the many panels that need to be run on a lupus patient.
It may well be that your dad's lupus will be limited to his skin. This will be very good news, although it can certainly still be life altering. Staying out of the sun will be key in preventing further flares as will overall good health tendencies and regular follow up with his doctor. I certainly wish him well!
Regarding the guilt issue, I agree that you can't take ownership of how your dad reacts to stress. Having said that, the reality is that of course you don't want your dad stressed out about your life. (For a whole lot of reasons, including his own health.) My best suggestion is that you reassure your dad that you are happy with your choice and doing well so he has less to worry about with your being so far away. I know for myself, I reached a point with my aging parents that I greatly filtered what I told them about regarding my own life. This wasn't out of any sense of privacy or secrecy but it just became clear they worried about every little thing I told them the older they grew. For instance, if I said I was tired after a long day at work, it became a long involved conversation from my mom about how I really needed to take care of myself, and why did I have such a stressful job, etc, etc. So, I just kept conversations a little "lighter" if you will and it worked quite well. Perhaps a similar tactic with your dad will help him feel connected and reassured, which may ultimately lessen his stress. (And yours too!)
And finally, yes, I absolutely believe there is some type of connection with all the autoimmune issues. My family is a walking encyclopedia of autoimmune issues....diabetes, allergies, asthma, lupus, raynauds, sjogren's, hashimoto and the list goes on! I sometimes wonder if one day in the future if there won't be some type of diagnosis that involves an "autoimmune syndrome" for folks like my dad and I who have so many autoimmune disorders. It's a topic I watch with great interest.
BTW, here's my favorite site for lupus info: http://www.lupus.org/newsite/index.html
Hope this helps a little. Hang in there!
Best wishes to you and your dad,
Julie
I'm sorry to hear about your dad. It's difficult when parents have health issues, particularly when you are not close by. Maybe my experience can help a little.
My dad is 83 and was diagnosed with discoid lupus about 20 years ago. Following his diagnosis he experienced skin involvement only, for several years. But, it was severe skin involvement with lesions over his entire trunk and arms. Like many chronic conditions the symptoms would wax and wane even with his being a very compliant patient. He went off and on steroids for years trying to get the symptoms under control. Eventually, he started experiencing systemic issues including joint pain, kidney issues and ITP (idiopathic thrombocytopenic purpura is a bleeding disorder in which the immune system destroys platelets), which put him in the hospital. He has had quite a difficult time with lupus related issues over the years.
With your dad, I would determine if he has been diagnosed with discoid (skin), systemic (organ involvement) or subacute cutaneous lupus erythematosus (mixed) lupus. That answer will determine the course of the illness. However, like my own dad, skin involvement can lead to systemic involvement, which of course can be very serious. This is one of the reasons why it is critical that someone with lupus be followed closely by a well qualified rheumatologist. A lupus patient (particularly one who is elderly) needs to be evaluated on a regular basis whether they are symptomatic at the time or not. Skin needs to be checked carefully and blood work needs to be run on a regular basis. The blood work for rheumatology issues is extensive which is another reason your dad needs to see a good rheumatologist. I would not trust a GP to know all the many panels that need to be run on a lupus patient.
It may well be that your dad's lupus will be limited to his skin. This will be very good news, although it can certainly still be life altering. Staying out of the sun will be key in preventing further flares as will overall good health tendencies and regular follow up with his doctor. I certainly wish him well!
Regarding the guilt issue, I agree that you can't take ownership of how your dad reacts to stress. Having said that, the reality is that of course you don't want your dad stressed out about your life. (For a whole lot of reasons, including his own health.) My best suggestion is that you reassure your dad that you are happy with your choice and doing well so he has less to worry about with your being so far away. I know for myself, I reached a point with my aging parents that I greatly filtered what I told them about regarding my own life. This wasn't out of any sense of privacy or secrecy but it just became clear they worried about every little thing I told them the older they grew. For instance, if I said I was tired after a long day at work, it became a long involved conversation from my mom about how I really needed to take care of myself, and why did I have such a stressful job, etc, etc. So, I just kept conversations a little "lighter" if you will and it worked quite well. Perhaps a similar tactic with your dad will help him feel connected and reassured, which may ultimately lessen his stress. (And yours too!)
And finally, yes, I absolutely believe there is some type of connection with all the autoimmune issues. My family is a walking encyclopedia of autoimmune issues....diabetes, allergies, asthma, lupus, raynauds, sjogren's, hashimoto and the list goes on! I sometimes wonder if one day in the future if there won't be some type of diagnosis that involves an "autoimmune syndrome" for folks like my dad and I who have so many autoimmune disorders. It's a topic I watch with great interest.
BTW, here's my favorite site for lupus info: http://www.lupus.org/newsite/index.html
Hope this helps a little. Hang in there!
Best wishes to you and your dad,
Julie
Hi Harma,
My brother has SLE (Systemic Lupus). He is 45 and has been diagnosed for at least 20 years (but had it long before that - probably his whole life). Autoimmune stuff most certainly does run in families!
My brother has had a lot of problems that my mum blames on his Lupus - but which I blame on gluten. No point raising it, as they can't comprehend cooking from scratch at home, not eating the goodies your friends cook, and taking responsibility for one's own health (my family do only what the doctor tells them - rarely wondering if that is the best option).
A good rheumatologist is essential, and regular monitoring.
It does get tricky when you see the impact you have on your parents. I also follow the line of just not telling my parents a lot of things. Or making health things sound trivial. No point making my mum worry as that just makes me upset.
Lyn
My brother has SLE (Systemic Lupus). He is 45 and has been diagnosed for at least 20 years (but had it long before that - probably his whole life). Autoimmune stuff most certainly does run in families!
My brother has had a lot of problems that my mum blames on his Lupus - but which I blame on gluten. No point raising it, as they can't comprehend cooking from scratch at home, not eating the goodies your friends cook, and taking responsibility for one's own health (my family do only what the doctor tells them - rarely wondering if that is the best option).
A good rheumatologist is essential, and regular monitoring.
It does get tricky when you see the impact you have on your parents. I also follow the line of just not telling my parents a lot of things. Or making health things sound trivial. No point making my mum worry as that just makes me upset.
Lyn
thank you Joan, Barbara, Julie and Lyn for your replies. Especially thank you for sharing of your personal information of a family member or another person in your environment with Lupus. The monitoring part is one I will mention to my dad (I don't have the impression it is automatically taking care of). What also got my attention on one of those websites recommended in this thread, that lupus (like MC) can be medication induced: procainamide (used to control various types of heart abnormalities), and hydralazine (used to control high blood pressure). I am not sure my father uses exact these types of medications, but I do know for sure he takes medication for these two conditions. I wouldn't be surprized in his case, it is medication induced. I will send him an email with the name of the medication and let his dermatologist check it.
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
Dear Harma
Sorry about your Dad. I cannot add to any knowledge about Lupus.
As far as family links to auto-immune disease: my father had diabetes from about 45 years and I think my sister has a slight thyroid issue.
I agree with telling older parents the "good news" and leaving out stuff that might worry them.
Best, ant
Sorry about your Dad. I cannot add to any knowledge about Lupus.
As far as family links to auto-immune disease: my father had diabetes from about 45 years and I think my sister has a slight thyroid issue.
I agree with telling older parents the "good news" and leaving out stuff that might worry them.
Best, ant
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"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
I’m sorry your dad is dealing with lupus. My dad was diagnosed with systemic lupus when he was 68. I believe his was caused by chemo treatments for stage 3 colon cancer when he was 61. He was always in excellent health prior to having cancer. The chemo cured the cancer but triggered a steady decline in his health. It is my belief that the chemo messed up his immune system, kicking it into overdrive which eventually resulted in lupus. He was never specifically treated for lupus. His doctor just dealt with the individual problems lupus caused until treatments began to conflict. At one point he was on over 25 medications, with carefully controlled dosages to prevent additional side effects. He passed away at age 74 due to multiple complications.
While I blame my dad’s lupus on chemo treatments, I should add that a female cousin also has lupus and fibromyalgia. So, it is possible that he was susceptible to an autoimmune disorder because of genetics.
As others have stated, I sincerely hope that your dad’s lupus will be confined only to skin.
While I blame my dad’s lupus on chemo treatments, I should add that a female cousin also has lupus and fibromyalgia. So, it is possible that he was susceptible to an autoimmune disorder because of genetics.
As others have stated, I sincerely hope that your dad’s lupus will be confined only to skin.