I just found out that I have lupus, can someone give me more sources to read about this illness??
Question: Help Please.
Answers: Hi, I am so sorry that you have Lupus. I have it as well. and have for over half of my 20 years. Most of those 20 years, spent going from doctor to doctor with mysterious symptoms, and no real answers. Finding out, in a way was a relief, but also very scary, because of all the things I heard about it, even back in the 80's and 90's.
I do know this. The mortality rate is not what it was, its used to be 90% died, now 90% live with proper care.
Lupus Is an Autoimmune disorder. In autoimmune disorders our bodies belive that there is an outside invador when none is present. which lends our own bodies cells to going into hyper-overdrive, meaning that it becomes overactive. The cells begin attacking themselves, and in lupus, they can attack any organ, including but not limited to the kidneys, heart, lungs, liver etc. it can also go after our bloood causing various types of anemia, skin, joints, muscles, and central nervours system and so forth. At this pint there is no cure. But having a good relationship with your rhuemotologist and proper care can slow the attack of the Lupus, and push the hyperactivity of the immune system down.
For many Lupus paitents there are periods of falres Active disease activity. As well as remmissions (when disease activity is low or inactive all together). Today doctors use several classes of medications to try and slow the hyper state of the our immune system. These drugs range from antimalarials like Plaquinil, to prednison (a steroid), to immunosuppresents, like Imuran, to Immunosuppresent/chemotherepay agents like methotrexate, cellcept, cytoxin, and others.
Personally, I have been on all at one point or another, to varying degrees of sucsess. But what works great for one, may not work well for another since we all have different body chemistry. I also take things like Fish oil (omegas 3 and 6), folic acid, coQ10, and some others.
Life with Lupus is not a normal Life, summer is hard on me personally, but I do live in very hot So CA, where temps are now in the 100's. and the sun is very hot, most people with Lupus have sunsensitivity and even heat issues. But I do do better in the cooler months, mainly because of the mild winter CA months.
I co-own a yahoo support group which you are welcome to check out, where we offer information, support, friendships, and general goofiness, because you can not allow this diagnosis to swallow you up.
But I will leave you several Lupus Links so you can learn more as well, because knowledge is power. There are also many many Books on Lupus that are available. To just give you the title of one or two is a disservice, because there are so many to choose from, and much of it comes down to your income, personal taste, and needs. I own several, like dubious: Lupus Eurthiousmyousis ( my poor poor sp skills), Lupus for women, Lupus Handbook, Lupus Handbook, and Lupus Q& A. But its all personal choice. I suggest a trip to amazon.com, just to browse, there you can take a peek at the selection, sometime read a chapter, and always see the table of contents. Also you can always purchase most books used at discounted prices unless they are new releses.
I wish you all the best, but I know if you learn to cope, you will be ok.
Good luck
Chris
Sorry to hear that - check out the following link.
http://www.webmd.com/search/search_resul...
One, or both of the following links may be of interest for you.
http://www.uklupus.co.uk/
http://www.lupus.org/
newsite/index.html
Hope this helps
matador 89
The sites already given are excellent sources. So is niams.gov.
If you want THE definitive reference book for lupus patients get THE LUPUS BOOK by Dr. Wallace. It is not an easy read, but it is the most comprehensive affordable book out there. Rheumatologists use SYSTEMIC LUPUS ERYTHEMATOSUS by Dubois. It costs a few hundred dollars. My rheumatologist let me borrow his for a few weeks. You can probably find it in a large university or med school llibrary. In those libraries you can go in and read even if you are not a student-at least the public ones, not sure about private schools though.
Best wishes.
PS One of the most critical pieces of your treatment plan is to develop an open and honest relationship with your rheumatologist. You will be seeing him/her often for life.
Its a auto-immune disease, but why dont you just look it up on your computer? You should get a lot of info by doing that.
Answers: Hi, I am so sorry that you have Lupus. I have it as well. and have for over half of my 20 years. Most of those 20 years, spent going from doctor to doctor with mysterious symptoms, and no real answers. Finding out, in a way was a relief, but also very scary, because of all the things I heard about it, even back in the 80's and 90's.
I do know this. The mortality rate is not what it was, its used to be 90% died, now 90% live with proper care.
Lupus Is an Autoimmune disorder. In autoimmune disorders our bodies belive that there is an outside invador when none is present. which lends our own bodies cells to going into hyper-overdrive, meaning that it becomes overactive. The cells begin attacking themselves, and in lupus, they can attack any organ, including but not limited to the kidneys, heart, lungs, liver etc. it can also go after our bloood causing various types of anemia, skin, joints, muscles, and central nervours system and so forth. At this pint there is no cure. But having a good relationship with your rhuemotologist and proper care can slow the attack of the Lupus, and push the hyperactivity of the immune system down.
For many Lupus paitents there are periods of falres Active disease activity. As well as remmissions (when disease activity is low or inactive all together). Today doctors use several classes of medications to try and slow the hyper state of the our immune system. These drugs range from antimalarials like Plaquinil, to prednison (a steroid), to immunosuppresents, like Imuran, to Immunosuppresent/chemotherepay agents like methotrexate, cellcept, cytoxin, and others.
Personally, I have been on all at one point or another, to varying degrees of sucsess. But what works great for one, may not work well for another since we all have different body chemistry. I also take things like Fish oil (omegas 3 and 6), folic acid, coQ10, and some others.
Life with Lupus is not a normal Life, summer is hard on me personally, but I do live in very hot So CA, where temps are now in the 100's. and the sun is very hot, most people with Lupus have sunsensitivity and even heat issues. But I do do better in the cooler months, mainly because of the mild winter CA months.
I co-own a yahoo support group which you are welcome to check out, where we offer information, support, friendships, and general goofiness, because you can not allow this diagnosis to swallow you up.
But I will leave you several Lupus Links so you can learn more as well, because knowledge is power. There are also many many Books on Lupus that are available. To just give you the title of one or two is a disservice, because there are so many to choose from, and much of it comes down to your income, personal taste, and needs. I own several, like dubious: Lupus Eurthiousmyousis ( my poor poor sp skills), Lupus for women, Lupus Handbook, Lupus Handbook, and Lupus Q& A. But its all personal choice. I suggest a trip to amazon.com, just to browse, there you can take a peek at the selection, sometime read a chapter, and always see the table of contents. Also you can always purchase most books used at discounted prices unless they are new releses.
I wish you all the best, but I know if you learn to cope, you will be ok.
Good luck
Chris
Sorry to hear that - check out the following link.
http://www.webmd.com/search/search_resul...
One, or both of the following links may be of interest for you.
http://www.uklupus.co.uk/
http://www.lupus.org/
newsite/index.html
Hope this helps
matador 89
The sites already given are excellent sources. So is niams.gov.
If you want THE definitive reference book for lupus patients get THE LUPUS BOOK by Dr. Wallace. It is not an easy read, but it is the most comprehensive affordable book out there. Rheumatologists use SYSTEMIC LUPUS ERYTHEMATOSUS by Dubois. It costs a few hundred dollars. My rheumatologist let me borrow his for a few weeks. You can probably find it in a large university or med school llibrary. In those libraries you can go in and read even if you are not a student-at least the public ones, not sure about private schools though.
Best wishes.
PS One of the most critical pieces of your treatment plan is to develop an open and honest relationship with your rheumatologist. You will be seeing him/her often for life.
Its a auto-immune disease, but why dont you just look it up on your computer? You should get a lot of info by doing that.
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