My name is Alisia, i'm 21 years old and was Diagnosed with SLE at the age of 15 along with Lupus Nephritus. My doctors have been telling me for a long time that i should find someone to talk with that has the disease and knows what i go through. I never have, until i found this website. I hope it helps and i hope i can help others with my experience. XOXOXO
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Hello Alisia and a big :welcome: to the forum!
My name is Zoi and I am 23 years old. I was diagnosed with lupus and aps when I was about 21. I mainly have cns involvement but have had problems with lupus nephritis along the way too...
How is your nephritis now? Are you on any meds for it?
I hope you are doing well
Zoi
My name is Zoi and I am 23 years old. I was diagnosed with lupus and aps when I was about 21. I mainly have cns involvement but have had problems with lupus nephritis along the way too...
How is your nephritis now? Are you on any meds for it?
I hope you are doing well
Zoi
Oh meds...I hate medicine. My kidneys are still not functioning very well but i dont need to be on dialysis so that is a miracle. The lupus numbers are really well though. My compliments and such. What is APS and CNS? I have quiet a list of medication. Mostly because i have had a lot of problems. I've had nervous system problems, and like 2 mini strokes. As of now i am on Furosemide, Prednisone, Lisinopril, Zoloft, Fiorinal w/codeine for migranes, calcitrol, nifediac, and metoprolol.
I have already felt so much better abotu myself. I dont really like talking to people about my disease and it frustrates me that soo many people have no idea what lupus is. So then i have to try and explain it even more and they get so confused. Then if they find out i'm on chemo (cytoxan) they think i have cancer or that i'm dying. Its nice to find somewhere i can talk and people actually understand because they have been through it or at least are familiar with the disease. My husband has been teasing me though because i'm on here ALL THE TIME now. He likes it though because i've been a lot more relaxed and i guess just happy in the few days i've been here
Hey there,
I'm sorry to hear your kidneys are still not doing so well; that's good news about you not needing dialysis though! It's also great that you seem to be focusing on the positive side of the situation!
CNS is central nervous system and APS or Hughes' Syndrome is an autoimmune disorder that makes the blood more prone to clot. Sometimes people with lupus have it, but one does not need to have lupus to have it. APS is very treatable with blood thinning medication; sometimes a med called coumadin (or another med called heparin) is used, but more often than not a simple baby aspirin a day is enough.
You've had two mini strokes? I'm sorry to hear that; it must have been scary for you... Do you know if you've ever been tested for APS? Mini strokes or transient ischemic attacks (TIAs) can sometimes be a sign of APS. You can find more information on aps in the "related conditions" part of this forum!
Ah! Cytoxan! Oddly familiar med, that! That cancer scare thing people get when they hear the word chemo is eerily familiar too! :lol: The people who know about my lupus and aps and about my having to go through cytoxan infusions etc etc can be counted on one hand; and when random people who may have overheard little bits and pieces about me being on chemo start ask where my cancer is I tend to either change the subject very fast or to just say "I'm sorry; I'd rather not talk about it" politely but abruptly enough so they don't dare ask any more questions....If I have visible symptoms like being yellow from nausea after an infusion I say silly stuff like "Oh...! I must have eaten the dog food by accident again" :lol: and generally people are too stunned to enquire further at that point...! I've found that explaining everything to everyone can be rather exhausting emotionally and unnecessary on so many levels hence I avoid it at all costs! Of course that's just me...
It's wonderful that you like the forum and that you've been finding it useful and relaxing!
:flowery:
Zoi
I'm sorry to hear your kidneys are still not doing so well; that's good news about you not needing dialysis though! It's also great that you seem to be focusing on the positive side of the situation!
CNS is central nervous system and APS or Hughes' Syndrome is an autoimmune disorder that makes the blood more prone to clot. Sometimes people with lupus have it, but one does not need to have lupus to have it. APS is very treatable with blood thinning medication; sometimes a med called coumadin (or another med called heparin) is used, but more often than not a simple baby aspirin a day is enough.
You've had two mini strokes? I'm sorry to hear that; it must have been scary for you...
Do you know if you've ever been tested for APS? Mini strokes or transient ischemic attacks (TIAs) can sometimes be a sign of APS. You can find more information on aps in the "related conditions" part of this forum! Ah! Cytoxan! Oddly familiar med, that! That cancer scare thing people get when they hear the word chemo is eerily familiar too! :lol: The people who know about my lupus and aps and about my having to go through cytoxan infusions etc etc can be counted on one hand; and when random people who may have overheard little bits and pieces about me being on chemo start ask where my cancer is I tend to either change the subject very fast or to just say "I'm sorry; I'd rather not talk about it" politely but abruptly enough so they don't dare ask any more questions....If I have visible symptoms like being yellow from nausea after an infusion I say silly stuff like "Oh...! I must have eaten the dog food by accident again" :lol: and generally people are too stunned to enquire further at that point...! I've found that explaining everything to everyone can be rather exhausting emotionally and unnecessary on so many levels hence I avoid it at all costs! Of course that's just me...
It's wonderful that you like the forum and that you've been finding it useful and relaxing!
:flowery:
Zoi
I was on cumadin for about a year because i had a blood clot in my neck and that is what cause the stroke. It was also very frustrating because i was getting painful headaches and vision problems and they just dol me it could be because i have an enlarged blood vessel in my brain. Then about a month after the headaches started i had the stroke/seizure. They think i might have had one before i had gone into the hospital for it because of the vision issues, not being able to see out of my left eye and the flashes of light that was going on. I also forgot i'm on a medicine for seizures but i cant think of the name.
I almost want to carry around little brochures with me with facts about lupus so i dont have to explain. I hadnt told my husband for about 5 months from when we started dating that i had lupus. He had already known from people talking about it but i wasnt comfortable telling him until i knew i wanted to be with him. I felt a little better thoug i went to his parents house one time and they had a magnet on their fridge that said LUPUS and had symptoms of it.
They have never tested me for those disease's but maybe i should talk to them about it. I'm not having symptoms of them anymore really though. I still get headaches ever once and awhile. I have a doctor appointment tomorrow with my kidney doc and i'm going to ask her about the fertility shots or maybe findind another source of treatment. On the thread about pregnancy and lupus i went to the site and it said that cytoxan has the highest risk of infertility. Isnt there another type of drug they can give you IV that works the same?
I almost want to carry around little brochures with me with facts about lupus so i dont have to explain. I hadnt told my husband for about 5 months from when we started dating that i had lupus. He had already known from people talking about it but i wasnt comfortable telling him until i knew i wanted to be with him. I felt a little better thoug i went to his parents house one time and they had a magnet on their fridge that said LUPUS and had symptoms of it.
They have never tested me for those disease's but maybe i should talk to them about it. I'm not having symptoms of them anymore really though. I still get headaches ever once and awhile. I have a doctor appointment tomorrow with my kidney doc and i'm going to ask her about the fertility shots or maybe findind another source of treatment. On the thread about pregnancy and lupus i went to the site and it said that cytoxan has the highest risk of infertility. Isnt there another type of drug they can give you IV that works the same?
Hey there,
Ok, first things first! You had a blood clot in your neck that caused your stroke??? And the docs think that an enlarged blood vessel in your brain caused the clot? When you say enlarged do you mean inflammed blood vessel (like in vasculitis) or...? Do you still have vision problems and headaches now that you're off the coumadin???
Re the cytoxan and fertility stuff: Cytoxan may or may not empair your fertility and there are a lot of factors that play a role in this: age, duration of treatment, dosage used etc. One of those factors is very much in your favour. Because you are very young no matter how many of your eggs cytoxan damages, there is a very good chance that when you’re done with your treatment your ovaries will recover and begin producing viable eggs once more and that your fertility will not be permanently affected.
I think it will be very helpful for you to discuss this with your doctors and maybe with your gyn too and they will be able to answer any questions you may have regarding fertility preservation and cytoxan and your questions regarding the possibiilty of any alternative treatments for you.
Best of luck on your appointment with your kidney doc!
Zoi
Ok, first things first! You had a blood clot in your neck that caused your stroke??? And the docs think that an enlarged blood vessel in your brain caused the clot? When you say enlarged do you mean inflammed blood vessel (like in vasculitis) or...? Do you still have vision problems and headaches now that you're off the coumadin???
Re the cytoxan and fertility stuff: Cytoxan may or may not empair your fertility and there are a lot of factors that play a role in this: age, duration of treatment, dosage used etc. One of those factors is very much in your favour. Because you are very young no matter how many of your eggs cytoxan damages, there is a very good chance that when you’re done with your treatment your ovaries will recover and begin producing viable eggs once more and that your fertility will not be permanently affected.
I think it will be very helpful for you to discuss this with your doctors and maybe with your gyn too and they will be able to answer any questions you may have regarding fertility preservation and cytoxan and your questions regarding the possibiilty of any alternative treatments for you.
Best of luck on your appointment with your kidney doc!
Zoi
Well that's what they thought was causing the headaches. They really didnt know why i was getting them soo often. But after ending up in the hospital they realized I was getting the headaches because my blood pressure was so high and that was due to kidney involvement. But yes it is vasculitis. I dont know if i still have that problem or not. I think they ruled it out as a cause of the headaches. Sometimes i think doctors arent very smart.
I no longer have vision problems. I do still get the headaches but that is due to high blood pressure. They cant seem to get it down. And the three medications i'm on arent helping. My bp is usually 130/100 so the top number isnt bad but the bottom one has always been high. I'm not sure it if is just because my kidneys arent 100% yet?
I made a list of things i've been hearing on the posts to ask my doctor about. Just to learn a little bit more about lupus and the types of treatments they have. I was on the cellcept for a long time and it was working really well but i no longer had insurance and it was like $900 for enough pills to get me through half a month. After my body had realized it wasnt getting the drug is when a lot of the problems started.
Thanks for taking so much time to talk to me. This is really helping out a lot!
I no longer have vision problems. I do still get the headaches but that is due to high blood pressure. They cant seem to get it down. And the three medications i'm on arent helping. My bp is usually 130/100 so the top number isnt bad but the bottom one has always been high. I'm not sure it if is just because my kidneys arent 100% yet?
I made a list of things i've been hearing on the posts to ask my doctor about. Just to learn a little bit more about lupus and the types of treatments they have. I was on the cellcept for a long time and it was working really well but i no longer had insurance and it was like $900 for enough pills to get me through half a month. After my body had realized it wasnt getting the drug is when a lot of the problems started.
Thanks for taking so much time to talk to me. This is really helping out a lot!
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