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Poll:
Lupylisa44 posted:
How old were you when you were diagnosed with lupus?
At what age did you first start having symptoms?
How many doctors did you have to see for lupus symptoms before your diagnosis?
Has your lupus ever become life threatening?
If yes, what treatments were used?
I was just curious what we all have in common
Lisa
22 Replies |Watch This Discussion | Report This| Share this:Poll:How old were you when you were diagnosed with lupus?
At what age did you first start having symptoms?
How many doctors did you have to see for lupus symptoms before your diagnosis?
Has your lupus ever become life threatening?
If yes, what treatments were used?
I was just curious what we all have in common
Lisa
Cammy1965 responded:
Hi
1. I was diagnosed with Lupus at the age of 43 (last year) but Doctors had mentioned it
as a possible Diagnosis since I was a teen. A few years prior to getting a definite diagnosis
I was diagnosed with some type of unknown/unspecified "auto-immune disease"
2. I think I've had symptoms for as long as I can remember but they became more
noticeable during my adolescence, during times of stress and following the birth
of my children.
3. I've seen too many Doctors to count but I met with four different Rheumatologists prior
to my diagnosis. Two male Doctors who said no, and two female who said yes.
4. Thank goodness I have not had any life threatening issues but I am pretty frightened
when I get pleurisy and it's hard to breath. Also, I am being monitored by an Oncologist
due to a history of swollen lymph nodes which terrifies me.
Cammy
Report This| Share this:Poll:Hi
1. I was diagnosed with Lupus at the age of 43 (last year) but Doctors had mentioned it
as a possible Diagnosis since I was a teen. A few years prior to getting a definite diagnosis
I was diagnosed with some type of unknown/unspecified "auto-immune disease"
2. I think I've had symptoms for as long as I can remember but they became more
noticeable during my adolescence, during times of stress and following the birth
of my children.
3. I've seen too many Doctors to count but I met with four different Rheumatologists prior
to my diagnosis. Two male Doctors who said no, and two female who said yes.
4. Thank goodness I have not had any life threatening issues but I am pretty frightened
when I get pleurisy and it's hard to breath. Also, I am being monitored by an Oncologist
due to a history of swollen lymph nodes which terrifies me.
Cammy
HG1948 responded:
Lisa,
I was 54 when I was first diagnosed with lupus.
I was 38 or 39 when I first started having symptoms.
I was seen by 8 different doctors, as a formal patient. I became desperate and started asking every doctor with who I worked daily in the hospital and in outpatient settings, "...What do you think is wrong with me?"
Yes, in 1992 I was admitted to the hospital with a diagnosis of respiratory failure.
I was admitted as an inpatient to a cardiac unit. I received respiratory therapy, oxygen, and tessalone pearls. Upon discharge, I was sent home with a heart monitor, I received two inhalers: abuteral, and a steroid inhaler whose name I can't remember, Humabid, oral potassium, and a weekly injectible "cocktail" with a non-steroid anti-inflammatory called Kutepressin, injectable ,magnesium, injectable calcium, and injectable B12. That's all I can remember.
Before finding this message board I had not meet anyone who had the medical problems that I had. I felt like some kind of freakish anomaly.
I enjoy reading polls.
HG
Report This| Share this:Poll:Lisa,
I was 54 when I was first diagnosed with lupus.
I was 38 or 39 when I first started having symptoms.
I was seen by 8 different doctors, as a formal patient. I became desperate and started asking every doctor with who I worked daily in the hospital and in outpatient settings, "...What do you think is wrong with me?"
Yes, in 1992 I was admitted to the hospital with a diagnosis of respiratory failure.
I was admitted as an inpatient to a cardiac unit. I received respiratory therapy, oxygen, and tessalone pearls. Upon discharge, I was sent home with a heart monitor, I received two inhalers: abuteral, and a steroid inhaler whose name I can't remember, Humabid, oral potassium, and a weekly injectible "cocktail" with a non-steroid anti-inflammatory called Kutepressin, injectable ,magnesium, injectable calcium, and injectable B12. That's all I can remember.
Before finding this message board I had not meet anyone who had the medical problems that I had. I felt like some kind of freakish anomaly.
I enjoy reading polls.
HG
2tired2tryharder responded:
I haven't been on in quite some time, and I was getting the board review sent to my email addy, but it doesn't come all the time...sigh. But got this one today...and I love to your polls, Lisa, they are always fun to answer.
1. I was diagnosed with lupus at 26 years of age
2. I had had symptoms, including high sun sensitvity, butterfly mask and rashes from as far back as I could remember. I had issues with my kidneys and lungs from the time I was a little kid. From the age of four or five.
3. No one thought of it till I was pregnant, and they tested me for syphilis. I tested possitive for that...LOL...it was a false possitive...one of the things that no one told me might happen...I did think about killing my husband. they retested and ran more tests and I was a poster child for SLE.
4. Yes, I have had some very exciting times with this disease. I have had pnemonia often and when I get colds and the flu I get horrible lung issues. I have been coded a couple of times...and I run fevers well. Lately it's gone after my heart, having had three heart attacks in the past six months. I have had three TIA's and I am having a lot of issues with my kidneys. I was dead twice and they brought me back, and I guess that means that I have several more people to meet and love before I leave.
5. I have about run out of antibiotics, used up my quota, and I am staying away from a lot of places I used to go all the time. I have decided that I will be picky about where I make appearances...LOL. I went to a nephew's graduation. But I missed anothers. They were both outside...the first had a tiny class, the second had three times as many. I don't go and see as many small kids...I went to a hospital after a two hour visit...it's funny...I'm 57 now, and I was told I would be dead at 36...so doctors have no idea what our life times will be...just remember enjoy what you can and tell those around you that you love them...and don't forget that you have to be ornery and feisty, that way they always come back for more...Ornery and Feisty Cheryl
Report This| Share this:Poll:I haven't been on in quite some time, and I was getting the board review sent to my email addy, but it doesn't come all the time...sigh. But got this one today...and I love to your polls, Lisa, they are always fun to answer.
1. I was diagnosed with lupus at 26 years of age
2. I had had symptoms, including high sun sensitvity, butterfly mask and rashes from as far back as I could remember. I had issues with my kidneys and lungs from the time I was a little kid. From the age of four or five.
3. No one thought of it till I was pregnant, and they tested me for syphilis. I tested possitive for that...LOL...it was a false possitive...one of the things that no one told me might happen...I did think about killing my husband. they retested and ran more tests and I was a poster child for SLE.
4. Yes, I have had some very exciting times with this disease. I have had pnemonia often and when I get colds and the flu I get horrible lung issues. I have been coded a couple of times...and I run fevers well. Lately it's gone after my heart, having had three heart attacks in the past six months. I have had three TIA's and I am having a lot of issues with my kidneys. I was dead twice and they brought me back, and I guess that means that I have several more people to meet and love before I leave.
5. I have about run out of antibiotics, used up my quota, and I am staying away from a lot of places I used to go all the time. I have decided that I will be picky about where I make appearances...LOL. I went to a nephew's graduation. But I missed anothers. They were both outside...the first had a tiny class, the second had three times as many. I don't go and see as many small kids...I went to a hospital after a two hour visit...it's funny...I'm 57 now, and I was told I would be dead at 36...so doctors have no idea what our life times will be...just remember enjoy what you can and tell those around you that you love them...and don't forget that you have to be ornery and feisty, that way they always come back for more...Ornery and Feisty Cheryl
JJinIN responded:
After reading some of your replies, I guess I have been blessed with having, as my Dr . described as, only a "mild" lupus. No organ involvement as of yet.
1. I was dxed last year at the age of 46.
2. Started having symptoms like fatigue, joint pain and swelling, sun sensitivity, and, rashes about two years prior to that.
3. The first year I blew off as the aging process and the start of being menopausal. As the symptoms continued and intensified, I went to my PC. Bloodwork and ect. came back normal. Last year, bloodwork came back positive for DNA antibodies and off to the Rhuemy I went. Since then I have been on Plaquinel, steroids, and have now added Cellcept to the mix. My monthly bloodwork and symptoms are still all over the place. One month good, two months bad. This has been a good month. Yeah!!
The hardest part of this has been trying to figure out my limitations. I was so used to doing it all as my husband is disabled. I have had to learn when to say enough is enough and don't worry about the dirty house or other "small" stuff. I still have days when if I feel good, I will over do it and pay for it the next three days.
JJinIN
Report This| Share this:Poll:After reading some of your replies, I guess I have been blessed with having, as my Dr . described as, only a "mild" lupus. No organ involvement as of yet.
1. I was dxed last year at the age of 46.
2. Started having symptoms like fatigue, joint pain and swelling, sun sensitivity, and, rashes about two years prior to that.
3. The first year I blew off as the aging process and the start of being menopausal. As the symptoms continued and intensified, I went to my PC. Bloodwork and ect. came back normal. Last year, bloodwork came back positive for DNA antibodies and off to the Rhuemy I went. Since then I have been on Plaquinel, steroids, and have now added Cellcept to the mix. My monthly bloodwork and symptoms are still all over the place. One month good, two months bad. This has been a good month. Yeah!!
The hardest part of this has been trying to figure out my limitations. I was so used to doing it all as my husband is disabled. I have had to learn when to say enough is enough and don't worry about the dirty house or other "small" stuff. I still have days when if I feel good, I will over do it and pay for it the next three days.
JJinIN
sleteacher1 responded:
Lisa..You forgot to fill out your own poll.
How old were you when you were diagnosed with lupus? 23 (now 46)
At what age did you first start having symptoms? 16 but they weren't the normal symptoms everyone else is listing. I was was having frequent kidney infections which got me sent to a Nephrologist. Kidney issues don't give symptoms, well at least not pain issues.
How many doctors did you have to see for lupus symptoms before your diagnosis? my PCP and my Nephrologist...he did a kidney biopsy for the dx
Has your lupus ever become life threatening? thankfully no
I was very lucky when it comes to getting a dx of this disease.
GREAT survey Lisa. I hope others join in. Now, about you, go back and answer your own questions. :grin:
Teach
Report This| Share this:Poll:Lisa..You forgot to fill out your own poll.
How old were you when you were diagnosed with lupus? 23 (now 46)
At what age did you first start having symptoms? 16 but they weren't the normal symptoms everyone else is listing. I was was having frequent kidney infections which got me sent to a Nephrologist. Kidney issues don't give symptoms, well at least not pain issues.
How many doctors did you have to see for lupus symptoms before your diagnosis? my PCP and my Nephrologist...he did a kidney biopsy for the dx
Has your lupus ever become life threatening? thankfully no
I was very lucky when it comes to getting a dx of this disease.
GREAT survey Lisa. I hope others join in. Now, about you, go back and answer your own questions. :grin:
Teach
Lupylisa44 responded:
I tried to answer my own poll but webmd kicked me out!...
1. I was 19 when I was diagnosed
2. I had been a sickly kid my whole life. Started getting lupus symptoms around the time I got my period. I was a late bloomer at 16. Had a bunch of sores in my mouth and pediatrician said I had trench mouth!! turns out, it was lupus.
3. The first big flare I had was while I was in college. I went to my 90 yr old aunt hazel's doctor since I didn't really have a doctor at school. Turns out, he was one of the best diagnosticians in the country at the time. I wasn't in there more than 5 minutes when he declared...You have lupus!!! So I guess I was lucky to get a Dx right away!
4. I have had pneumonia, pleurisy. pleural effusion-all the usual suspects. In 1999 I was Dx'd with lupus nephritis. I was at sage 4.5 kidney failure. Doctors told me I was gonna die!
5. I went through the cytoxan protocol for nearly 3 years and started cellcept. Guess what??? I'm still here!
Report This| Share this:Poll:I tried to answer my own poll but webmd kicked me out!...
1. I was 19 when I was diagnosed
2. I had been a sickly kid my whole life. Started getting lupus symptoms around the time I got my period. I was a late bloomer at 16. Had a bunch of sores in my mouth and pediatrician said I had trench mouth!! turns out, it was lupus.
3. The first big flare I had was while I was in college. I went to my 90 yr old aunt hazel's doctor since I didn't really have a doctor at school. Turns out, he was one of the best diagnosticians in the country at the time. I wasn't in there more than 5 minutes when he declared...You have lupus!!! So I guess I was lucky to get a Dx right away!
4. I have had pneumonia, pleurisy. pleural effusion-all the usual suspects. In 1999 I was Dx'd with lupus nephritis. I was at sage 4.5 kidney failure. Doctors told me I was gonna die!
5. I went through the cytoxan protocol for nearly 3 years and started cellcept. Guess what??? I'm still here!
LilPrego216 responded:
How old were you when you were diagnosed with lupus? - 19
At what age did you first start having symptoms? - 16/17
How many doctors did you have to see for lupus symptoms before your diagnosis? - 1
Has your lupus ever become life threatening? - YES!
If yes, what treatments were used? - high doses of oral and IV 'roids, CellCept (high dose), antibiotics, BP meds, narcs to control the pain, and valium
Report This| Share this:Poll:How old were you when you were diagnosed with lupus? - 19
At what age did you first start having symptoms? - 16/17
How many doctors did you have to see for lupus symptoms before your diagnosis? - 1
Has your lupus ever become life threatening? - YES!
If yes, what treatments were used? - high doses of oral and IV 'roids, CellCept (high dose), antibiotics, BP meds, narcs to control the pain, and valium
gdezz825 responded:
Hello,
1)i was 23 when i was first diagnosed
2)The symptoms started when i was around 15 that i can remember
3) hmmm how many drs, too many, so many dfferent symptoms looked at singulary until one finnaly looked at everything as a whole. i started going to the drs when i was 15 for a rash i would get during the summer..... then many different reasons from then. though i did have Mono when i was 10, i dont know if that was related.
4) no, thankgod not life threatening, but a pain.
right now i am just on Plaquenil for maitnence, Ultram for pain, and Medrol packs for periods of severe pain and swelling.
Gabrielle
Report This| Share this:Poll:Hello,
1)i was 23 when i was first diagnosed
2)The symptoms started when i was around 15 that i can remember
3) hmmm how many drs, too many, so many dfferent symptoms looked at singulary until one finnaly looked at everything as a whole. i started going to the drs when i was 15 for a rash i would get during the summer..... then many different reasons from then. though i did have Mono when i was 10, i dont know if that was related.
4) no, thankgod not life threatening, but a pain.
right now i am just on Plaquenil for maitnence, Ultram for pain, and Medrol packs for periods of severe pain and swelling.
Gabrielle
kducks responded:
How old were you when you were diagnosed with lupus? I was 17(now a week away from 34) and in my senior year of high school.
At what age did you first start having symptoms? 17
How many doctors did you have to see for lupus symptoms before your diagnosis? Only one, I had the most wonderful pediatrician in the world! Man I miss her!
Has your lupus ever become life threatening? Yes, my Lupus mainly manifested itself in my blood and attacked my blood cells. I had a couple of years where the doctors were sure I wasn't going to make it because no one could figure out what was going on.
If yes, what treatments were used? Very high prednisone, methotrexate, plaquneil, weekly iron injections, other stuff that I can't even remember. I was injecting myself with my metho at one point because I could no handle the pill form and was losing too much weight from it. Wish I had that problem now, lol!
Report This| Share this:Poll:How old were you when you were diagnosed with lupus? I was 17(now a week away from 34) and in my senior year of high school.
At what age did you first start having symptoms? 17
How many doctors did you have to see for lupus symptoms before your diagnosis? Only one, I had the most wonderful pediatrician in the world! Man I miss her!
Has your lupus ever become life threatening? Yes, my Lupus mainly manifested itself in my blood and attacked my blood cells. I had a couple of years where the doctors were sure I wasn't going to make it because no one could figure out what was going on.
If yes, what treatments were used? Very high prednisone, methotrexate, plaquneil, weekly iron injections, other stuff that I can't even remember. I was injecting myself with my metho at one point because I could no handle the pill form and was losing too much weight from it. Wish I had that problem now, lol!
desmondislost responded:
I started seeing symptoms maybe around age 23. Diagnosed at age 26, that was just a month ago.
Doctors, about 3.
Report This| Share this:Poll:I started seeing symptoms maybe around age 23. Diagnosed at age 26, that was just a month ago.
Doctors, about 3.
lupieme03 responded:
1) I was 21 when I was officially diagnosed.
2) I started having symptoms in my late teens, like sixteen/seventeen.
3) I saw 6 different docs.
4) I'm blessed that it has not been life threatening physically.. but emotionally and mentally I've been there a time or three.
5) I was on a lot of anti-depressents for a while but now I use prayer and patience.
Report This| Share this:Poll:1) I was 21 when I was officially diagnosed.
2) I started having symptoms in my late teens, like sixteen/seventeen.
3) I saw 6 different docs.
4) I'm blessed that it has not been life threatening physically.. but emotionally and mentally I've been there a time or three.
5) I was on a lot of anti-depressents for a while but now I use prayer and patience.
Sher60 responded:
I was just diagnosed in May at 49, but have been seeing specialists for about 4 years.
I think my symptoms started after my son was born, at age 37. I thought it was new-mommy fatigue combined with my age. He was a pre-term baby after 4 years of unexplained infertility and corresponding treatments, so since I have been reading about lupus, I wonder if it was actually an issue then as well. In that case, I would have been developing this for over 15 years now.
I have seen 2 rheumotologists and 2 neurologists. I have plaques on the MRI and a negative ANA, so I was being monitored for MS not lupus for about a year. The MRI hasn't changed, symptoms continue to worsen so my GP sent me back to the Rheum. a second time to re-visit her original feelings about it being autoimmune. Still no ANA, just high SED and blood in urine combined with symptoms. The diagnosis came after the prednisone worked.
Never life threatening, although it's sad to admit, that I had times where I wished something would worsen to the point of needing hospitalization so that I would get a diagnosis and some kind of treatment.
Report This| Share this:Poll:I was just diagnosed in May at 49, but have been seeing specialists for about 4 years.
I think my symptoms started after my son was born, at age 37. I thought it was new-mommy fatigue combined with my age. He was a pre-term baby after 4 years of unexplained infertility and corresponding treatments, so since I have been reading about lupus, I wonder if it was actually an issue then as well. In that case, I would have been developing this for over 15 years now.
I have seen 2 rheumotologists and 2 neurologists. I have plaques on the MRI and a negative ANA, so I was being monitored for MS not lupus for about a year. The MRI hasn't changed, symptoms continue to worsen so my GP sent me back to the Rheum. a second time to re-visit her original feelings about it being autoimmune. Still no ANA, just high SED and blood in urine combined with symptoms. The diagnosis came after the prednisone worked.
Never life threatening, although it's sad to admit, that I had times where I wished something would worsen to the point of needing hospitalization so that I would get a diagnosis and some kind of treatment.
livingwithlupusfor37years responded:
Hi Lisa,
I was diagnosed at the ripe old age of 12, (in 1972) and have lived with the wolf for 37 years.
When I was 6 or 7 I started having kidney problems, and the docs couldn't figure out why I was putting out so much protein in my urine. I also frequently got "the flu" which now I realize was probably a flare. At the age of about 10, I started waking up every morning with my eyes swollen shut, I would have to put warm washcloths on them for awhile before I could get them open good. My parents took me to an opthamologist thinking it was just an eye problem and he dx me with "dandruff of the eyelids". This went on till I was 12. At that time, I started having severe fatique. My teachers would send notes home because I was sleeping so much in class. Then I starting having a hacking dry cough and some pleuritic chest pain, it was in the fall, so my parents thought it was probably allergies. Soon after I developed the butterfly rash, but again my dear ole mom thought I was just getting acne. It wasn't until I started running a high fever, couldn't keep anything down when I ate, stopped eating almost completely and starting having bloody urine that my mother decided it was time to take me to the doctor. Please let me say in Mom's defense that we were very poor and didn't have any health insurance or money to pay for the doctors. She found a family practice where they charged according to your income. It really only took the one doctor then. When I walked in that day, I had involvement in every body system. I had pericarditis, pleurisy, nephitis, the butterfly rash, joint pain, severe headaches and had lost 20 pounds in less than 2 weeks. Because of my young age the doctors did not want to dx me with lupus, so it took about 2 more weeks before they started me on prednisone, I still got sicker after that and was in the hospital for 6 weeks before they did a kidney biopsy to diagnose lupus nephritis. During this time I think they told my parents on at least 2 occasions that I would not live through the nite, and I was placed in pediatric ICU. After the biopsy they started me on 150mg Prednisone twice a day for a while and then slowly weaned me down. (No need to say what that much prednisone made me look like). They sent me home after being in the hospital 7weeks and 2 days, this was right before Christmas. They told my parents to make this a special Christmas as this would likely be my last. But I slowly got better and was able to return to school. By the time I was in the 9th grade, I was down to 5mg prednisone every other day and by the time I graduated I had stopped taking prednisone at all. I got married, and got pregnant twice both resulting in a spontaneous miscarriage. But later, I got pregnant again and delivered a healthy little girl. My lupus stayed in remission until I was 26 (while I was in nursing school) and again it reared its ugly head with a vengence. I was eventually placed back on prednisone with the addition of Imuran and Plaguenil. After suffering several strange neurological symptoms, I was found to have the antiphospholipid antibody and had to be placed on coumadin. I am still on prednisone, plaguenil, and imuran and coumadin. I have had several TIA's and one stroke (which left my left arm paralyzed but I was able to eventually get full use of it back) and a pulmonary embolus. I have had to have my Right hip replaced due to avascular necrosis and will eventually need the left replaced (I have xray evidence of avas.nec in the left - but not a lot of pain, so I am waiting it out). My rheumatologist says that I will always be on the meds I am on, even though my labs have somewhat normalized. He says that if I have another major flare that he will have to go to something stronger - cellcept, methotrexate, etc. - because I do have the antiphospholipid antibodies.
I didn't mean to make this so long but 37 years is a long time. All in all I have to say my life has been a good.
Report This| Share this:Poll:Hi Lisa,
I was diagnosed at the ripe old age of 12, (in 1972) and have lived with the wolf for 37 years.
When I was 6 or 7 I started having kidney problems, and the docs couldn't figure out why I was putting out so much protein in my urine. I also frequently got "the flu" which now I realize was probably a flare. At the age of about 10, I started waking up every morning with my eyes swollen shut, I would have to put warm washcloths on them for awhile before I could get them open good. My parents took me to an opthamologist thinking it was just an eye problem and he dx me with "dandruff of the eyelids". This went on till I was 12. At that time, I started having severe fatique. My teachers would send notes home because I was sleeping so much in class. Then I starting having a hacking dry cough and some pleuritic chest pain, it was in the fall, so my parents thought it was probably allergies. Soon after I developed the butterfly rash, but again my dear ole mom thought I was just getting acne. It wasn't until I started running a high fever, couldn't keep anything down when I ate, stopped eating almost completely and starting having bloody urine that my mother decided it was time to take me to the doctor. Please let me say in Mom's defense that we were very poor and didn't have any health insurance or money to pay for the doctors. She found a family practice where they charged according to your income. It really only took the one doctor then. When I walked in that day, I had involvement in every body system. I had pericarditis, pleurisy, nephitis, the butterfly rash, joint pain, severe headaches and had lost 20 pounds in less than 2 weeks. Because of my young age the doctors did not want to dx me with lupus, so it took about 2 more weeks before they started me on prednisone, I still got sicker after that and was in the hospital for 6 weeks before they did a kidney biopsy to diagnose lupus nephritis. During this time I think they told my parents on at least 2 occasions that I would not live through the nite, and I was placed in pediatric ICU. After the biopsy they started me on 150mg Prednisone twice a day for a while and then slowly weaned me down. (No need to say what that much prednisone made me look like). They sent me home after being in the hospital 7weeks and 2 days, this was right before Christmas. They told my parents to make this a special Christmas as this would likely be my last. But I slowly got better and was able to return to school. By the time I was in the 9th grade, I was down to 5mg prednisone every other day and by the time I graduated I had stopped taking prednisone at all. I got married, and got pregnant twice both resulting in a spontaneous miscarriage. But later, I got pregnant again and delivered a healthy little girl. My lupus stayed in remission until I was 26 (while I was in nursing school) and again it reared its ugly head with a vengence. I was eventually placed back on prednisone with the addition of Imuran and Plaguenil. After suffering several strange neurological symptoms, I was found to have the antiphospholipid antibody and had to be placed on coumadin. I am still on prednisone, plaguenil, and imuran and coumadin. I have had several TIA's and one stroke (which left my left arm paralyzed but I was able to eventually get full use of it back) and a pulmonary embolus. I have had to have my Right hip replaced due to avascular necrosis and will eventually need the left replaced (I have xray evidence of avas.nec in the left - but not a lot of pain, so I am waiting it out). My rheumatologist says that I will always be on the meds I am on, even though my labs have somewhat normalized. He says that if I have another major flare that he will have to go to something stronger - cellcept, methotrexate, etc. - because I do have the antiphospholipid antibodies.
I didn't mean to make this so long but 37 years is a long time. All in all I have to say my life has been a good.
marilynk2 responded:
OK, here goes..... my crazy story, just like me!!!!!
How old were you when you were diagnosed with Lupus?...45 and was told it was unusual to be "so old" to be dx'd at this age. Now I see many have been at their mid 40's!
At what age did you first start having symptoms? 12 when I collapsed with an inflamed hip joint. When I read about all the teenage symptoms of a Lupus patient, I had most of them!
How many doctors did you have to see for Lupus symptoms before your diagnosis? Since I had all the symptoms from that initial hip problem and a doc who said, "This is a foreshadowing of a rheumatological problem later on.", I I had seen too many that said,"You'll probably never know why this happened!" Then I hit the wall and collapsed in 2001.
Has your Lupus ever become life threatening? Thank God, no!
But, it isn't to say the road hasn't been easy. We all know that. Knowing heather as I do, I know what she has gone through fighting her kidney problems and I would never want to be in her shoes and I know I shouldn't complain. We all have to deal with the Wolf in our own way. I only wish I had a support network here to help me through the bad days so I could have help keeping up with bills, grocery shopping and even some house cleaning.
I think that is a good question as well. Who has a support network to help them on a daily or weekly basis? Makes coping so much easier!
(((((((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))
Marilyn
Report This| Share this:Poll:OK, here goes..... my crazy story, just like me!!!!!
How old were you when you were diagnosed with Lupus?...45 and was told it was unusual to be "so old" to be dx'd at this age. Now I see many have been at their mid 40's!
At what age did you first start having symptoms? 12 when I collapsed with an inflamed hip joint. When I read about all the teenage symptoms of a Lupus patient, I had most of them!
How many doctors did you have to see for Lupus symptoms before your diagnosis? Since I had all the symptoms from that initial hip problem and a doc who said, "This is a foreshadowing of a rheumatological problem later on.", I I had seen too many that said,"You'll probably never know why this happened!" Then I hit the wall and collapsed in 2001.
Has your Lupus ever become life threatening? Thank God, no!
But, it isn't to say the road hasn't been easy. We all know that. Knowing heather as I do, I know what she has gone through fighting her kidney problems and I would never want to be in her shoes and I know I shouldn't complain. We all have to deal with the Wolf in our own way. I only wish I had a support network here to help me through the bad days so I could have help keeping up with bills, grocery shopping and even some house cleaning.
I think that is a good question as well. Who has a support network to help them on a daily or weekly basis? Makes coping so much easier!
(((((((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))
Marilyn
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Dr. R. Swamy Venuturupalli is a board-certified rheumatologist practicing in Los Angeles. He is Clinical Chief of the Division of Rheumatology at Ce...More
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