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missfearless
06-13-2011, 08:29 PM
Hello,

I'm a teenager who was diagnosed with lupus last year. My condition was relatively stable until the last month when my mom decided to stop my steroids because she believed they weren't helping me and not tell the doctor. It was a huge mistake, the lupus started attacking my body and I had the worst flare ever and had to be admitted to hospital. Now I'm taking my medications and it's a lot more compared to last time.

Anyone feel free to share the medication you're taking and when you were diagnosed with lupus.

I hope to make new friends here. Stay strong everyone!

tgal
06-13-2011, 08:39 PM
Hi there! First let me welcome you to WHL! You have just joined a wonderful group of people that have been touched by this nasty disease just like you have. I am sorry for what you had to go through but hopefully you (and your mom) have learned not to stop medicines without a doctors order. Lupus is a deadly disease if left untreated. Thankfully we have medicines that allow most of us to live long, successful lives but the key is taking the medicines that will help us. As you have found out, not taking them can be a nightmare.

We are really glad to have you as part of our WHL family and I look forward to getting to know you better!

FYI- There are several teens in our group and I am sure they will greet you shortly!

Gizmo
06-13-2011, 09:01 PM
Miss Fearless,
I love your tag name. You sound like you have a very positive attitude about your self and your ability to deal with lupus. Welcome!

Does your mom understand now how important your meds are? As the mother of a teen with multiple medical issues, I know that it can be really hard to see your child sick and sometimes denial seems like a reasonable coping mechanism. If your mom wants you to go off your meds again, please get your doctor involved right away. My guess is that she is feeling pretty guilty right now, and sometimes that comes out as frustration. Hopefully your family will learn to work as a team to keep you out of the hospital and give you as normal a life as possible.

I am 47 and was diagnosed with lupus 12 years ago, but had symptoms starting after my first child was born when I was 25. I take plaquinil, quinacrine, Imuran and am enrolled in a study of a new IV drug for lupus. I take prednisone for flares, but I was able to stop taking it on a daily basis after I started Imuran. My daughter takes prednisone, fludricortisone, plaquinil and methotrexate for undifferentiated connective tissue disorder. She just graduated from high school, and it was a rough road. If you need any ideas about dealing with teachers, 504 plans or scheduling, we've got a lot of experience.

lovedbyHim
06-13-2011, 09:25 PM
Hi misfearless, so glad you found us! Such good people you will meet here! The info and validation is so helpful here. Okay I am on prednisone, Plaquinil, lodine, skelaxin,cymbalta,levoxil, 50,000 iu vitamin D, and several supplements. Each one was slowly added as each symptom presented itself. I was an all natural kind of gal, before lupus, however I had to accept this new way of life in order to have some quality of life. Each med has its issues but without them I am no good to anyone. Hope this helps (big HUG for you!).

giggle
06-13-2011, 09:57 PM
welcome! This place changed my life, i am so glad to see you here, maybe your mum could join up aswell, it may help her understand that medication wont eliminate 100% of lupus symptoms but meds are impprtant to our survival. Untreated this is a more serious condition than most realise. I went off my meds because all the information about lupus online seemed to imply that once treated, people with lupus will have completely normal lives. Thats both true and false... It will never be normal, we will always have to be careful and we will always need meds... At the very least. And some of us have to make big changes to our lives to cope. But here you have found a soft place to land and a great place to learn.
Stick around : )

missfearless
06-14-2011, 12:55 AM
Hi, yes I try to be fearless and overcome any obstacles I get. :)

My mother knows my meds are important but she still seems to think they don't wrk. She even talked about cutting my dose today when I was just out of hospital yesterday! Luckily I insisted I take the dose given by the doctor. She believes in using the natural way by giving me a healthy diet but I know how important my medication are. Hopefully my mom will come to accept that I have to take it for life. She looked really sad when she saw all the medicine I had to take.


Miss Fearless,
I love your tag name. You sound like you have a very positive attitude about your self and your ability to deal with lupus. Welcome!

Does your mom understand now how important your meds are? As the mother of a teen with multiple medical issues, I know that it can be really hard to see your child sick and sometimes denial seems like a reasonable coping mechanism. If your mom wants you to go off your meds again, please get your doctor involved right away. My guess is that she is feeling pretty guilty right now, and sometimes that comes out as frustration. Hopefully your family will learn to work as a team to keep you out of the hospital and give you as normal a life as possible.

I am 47 and was diagnosed with lupus 12 years ago, but had symptoms starting after my first child was born when I was 25. I take plaquinil, quinacrine, Imuran and am enrolled in a study of a new IV drug for lupus. I take prednisone for flares, but I was able to stop taking it on a daily basis after I started Imuran. My daughter takes prednisone, fludricortisone, plaquinil and methotrexate for undifferentiated connective tissue disorder. She just graduated from high school, and it was a rough road. If you need any ideas about dealing with teachers, 504 plans or scheduling, we've got a lot of experience.

Peridot20_Gem
06-14-2011, 03:30 AM
Hi Missfearless,

Welcome to our lovely family at WHL and it's lovely to have you with us plus you'll learn so much from the threads, symptoms connected to the disease.
Sorry to hear what happened with your mom then hospital but at least your on a stable road again.

Lupus is a disease where it needs medication to help to surpress it's symptoms but i do love your attitude to life and this goes a long way with coping with Lupus, at a young age.

((Hugs Terri)) xxx

Gizmo
06-14-2011, 04:27 AM
Is it safe to assume that your mom has been feeding you healthy food all along? Based on that you could make the argument that your diet alone wasn't enough to keep this from happening. There are foods that are supposed to help with inflammation and pain (sour cherries come to mind), but they don't take the place of meds. There was a good list in the AARP magazine a few months ago. I'll see if I still have it. The very first thing us moms do for our kids when they are born is feed them. It's a strong instinct to nourish and comfort our kids. Maybe you and your mom can agree that she will be in charge of helping you eat in the best way for your disease, and she will agree to voice her concerns directly to the doctor and follow his/her instructions carefully, including taking meds as directed. It sounds like your doctor(s) are taking this very seriously, so make sure that your mom is with you at your appointments, so that she can hear what the doctor says and ask questions. You might be able to ask pointed questions, like "Can I control this by eating a healthy diet?" "Is it safe to take herbal medicines?" "What do you think would happen if I don't take my medications?" or even "My Mom isn't comfortable with the treatment plan. It would be great if the two of you could talk about why you are giving me these drugs." Maybe you need a second opinion to convince your mom that the doctor is right - just make sure you get a good rheumatologist and not a homeopath or chiropractor. Unfortunately your mom does have the power to take away your meds until you are 18, so it's great that you are standing up for yourself and that she is listening.

Motherhood equips you with all sorts of instincts to protect your children. She is realizing that she can't protect you from all the bad things in life, and it sounds like the meds have become a symbol of your disease in her mind. Her instinct, at a level below rational thought, is to protect you from what she sees as a threat. Our meds do have potentially serious side effects, so not only are the meds a constant reminder that you are sick but they also have the potential to make you sick in a different way. She is going through the classic stages of grief, and unfortunately denial is the first one and acceptance is the last. Hopefully she will find the emotional support that she needs (from someone other than you) to get through this so that she can be your ally.

steve.b
06-14-2011, 06:02 AM
hi missfearless.
i am a father, who has mildly sick children.
it is not easy to admit that what you are doing to protect your children does not work.
to admit this means that you have to admit you have failed. this is not easy.

mum may not be ready to say this.
fear of failure is one of the strongest fears to overcome.

she obviously loves you, and is trying to protect you.

i know my medication has helped me to stabalise, not be cured, but stabalise.
there is no easy answer, but listen to what the others on this page have said.
you and mom must come to an agreement. use the doctor to help you.

ritzbit
06-14-2011, 07:04 AM
Hi and welcome =) I dont know if I still fall into the teen catagory lol but Im 18 and was diagnosed when I was 16. I really hope your mom starts to realize how important your meds are. She needs to know that being on them is doing a lot more for you than being off them. They are unfortunately our only option to be healthy (mostly healthy).

Im on Medrol, Cellcept, Plaquenil, Norvasc, Prilosec, Baby Asprin, Mobic, and currently an antibiotic for yet another infection. I hate pills, but I take them.

missfearless
06-14-2011, 07:21 AM
Yes she has been giving me healthy food. We're Asian and she's a really health concisious person. For her, she just wants to do things naturally but hopefully she'll come to understand that condition needs the medication. She's always with me during appointments. Our rheumatologist is one of the most senior so I should be good.


Is it safe to assume that your mom has been feeding you healthy food all along? Based on that you could make the argument that your diet alone wasn't enough to keep this from happening. There are foods that are supposed to help with inflammation and pain (sour cherries come to mind), but they don't take the place of meds. There was a good list in the AARP magazine a few months ago. I'll see if I still have it. The very first thing us moms do for our kids when they are born is feed them. It's a strong instinct to nourish and comfort our kids. Maybe you and your mom can agree that she will be in charge of helping you eat in the best way for your disease, and she will agree to voice her concerns directly to the doctor and follow his/her instructions carefully, including taking meds as directed. It sounds like your doctor(s) are taking this very seriously, so make sure that your mom is with you at your appointments, so that she can hear what the doctor says and ask questions. You might be able to ask pointed questions, like "Can I control this by eating a healthy diet?" "Is it safe to take herbal medicines?" "What do you think would happen if I don't take my medications?" or even "My Mom isn't comfortable with the treatment plan. It would be great if the two of you could talk about why you are giving me these drugs." Maybe you need a second opinion to convince your mom that the doctor is right - just make sure you get a good rheumatologist and not a homeopath or chiropractor. Unfortunately your mom does have the power to take away your meds until you are 18, so it's great that you are standing up for yourself and that she is listening.

Motherhood equips you with all sorts of instincts to protect your children. She is realizing that she can't protect you from all the bad things in life, and it sounds like the meds have become a symbol of your disease in her mind. Her instinct, at a level below rational thought, is to protect you from what she sees as a threat. Our meds do have potentially serious side effects, so not only are the meds a constant reminder that you are sick but they also have the potential to make you sick in a different way. She is going through the classic stages of grief, and unfortunately denial is the first one and acceptance is the last. Hopefully she will find the emotional support that she needs (from someone other than you) to get through this so that she can be your ally.

Peridot20_Gem
06-15-2011, 06:04 AM
Hello missfearless,

I have a passing friend where i live and she's jamaica origin and as full blown Lupus and is abit older than me as i'm 42, she had the full works when she was younger and would'nt touch the meds just how your mom feels about you and used herbel remedies totally believed in them, i saw her just after christmas as i've not seen her since. She looked totally ill, she'd lost alot of hair from the front of her head, dark pigments across her face, she just looked really ill, she came talking to me and this is the lady who would'nt touch meds linked to Lupus, the day before she saw me she'd started on plaquenil.

Some things just won't work how your mom believes and this friend of mine because sometimes a point of no return comes, so you go on the stuff which can help best.

Terri xxx

Gizmo
06-15-2011, 07:22 AM
Yes she has been giving me healthy food. We're Asian and she's a really health concisious person. For her, she just wants to do things naturally but hopefully she'll come to understand that condition needs the medication. She's always with me during appointments. Our rheumatologist is one of the most senior so I should be good.

I married into a Japanese American family, so I know that there are cultural values that are an integral part of how people think about the world. I think that distrust of Western medicine is especially strong for folks who were born outside the U.S, as opposed to Asians who are 2nd or 3rd generation Americans. The really great thing about Asian values is the emphasis (like your mom's) on healthy living, balance and family. That's something that doesn't come naturally to a lot of us caucasians LOL. As you probably already know, Asian women are at a higher risk of developing lupus. Are there any cultural beliefs about illness that might be affecting your mom's response - like is sickness something to be kept secret, or something that you don't talk about with people outside your community? I don't know much about Asian cultures outside of the Japanese American variety.

Peridot20_Gem
06-16-2011, 06:16 AM
Hello Missfearless,

How you feeling now in yourself and is your mom better about you taking the meds? xxx

missfearless
06-16-2011, 07:46 AM
Hi gizmo, my mother is just someone who believes in using things that are natural. However since I last posted, I can tell that she has accepted the fact that I HAVE to eat medicine. She'll probably still cheat a little and insist I don't eat medicine for high blood pressure and cholesterol but at least she is not stopping me from eating the hydroxychloroquine and prednisone.


I married into a Japanese American family, so I know that there are cultural values that are an integral part of how people think about the world. I think that distrust of Western medicine is especially strong for folks who were born outside the U.S, as opposed to Asians who are 2nd or 3rd generation Americans. The really great thing about Asian values is the emphasis (like your mom's) on healthy living, balance and family. That's something that doesn't come naturally to a lot of us caucasians LOL. As you probably already know, Asian women are at a higher risk of developing lupus. Are there any cultural beliefs about illness that might be affecting your mom's response - like is sickness something to be kept secret, or something that you don't talk about with people outside your community? I don't know much about Asian cultures outside of the Japanese American variety.

Franziska
06-16-2011, 08:12 AM
Missfearless, I believe in using things that are natural. When I was diagnosed with lupus I went to see a homeopath and I do believe that what she did made me feel better a lot. HOWEVER, I was also regularly seen by the university hospital doctors and kept sticking to my medicine. If your mum would break her foot, she'd go and see a doctor, right? She wouldn't sit at home and drink herbal tea to make it better. Well, your body is broken in a way so it needs looking after. The medicine you are taking was developed by studying the human body for a long time and how it works and why some things don't work.

Your mum insisting on eating healthy is a very good thing, it can only add to you getting better.

I used to be on prednisone but now I'm only on hydroxychloroquine because my doc said there is no need for me to take anymore prednisone and he slowly reduced the dose until I could fully stop. It's actually really dangerous taking steroids for a while and then abruptly stop taking them. This could harm you more than do you any good.

Good luck to you and keep positive, having lupus is not totally bad!

lovedbyHim
06-16-2011, 09:25 AM
When I struggle with the meds the doc put me on, I call them and ask why I am specifically on them and if it would harm me to back off of them. My doc believes I must stay on all I am on, because each time I tried to cut back, I got very sick. Again, I truly believe in quality of life and if the meds can bring that to me in spite of the side effects, I am in! I hate the fluid retention. I hate the weight gain. I hate the nausea. But my hair grew back, I can walk again, the organ inflamation is under control, I can laugh again, I am back to work, I even hiked many miles last fall.

I hope that as your mom learns about the reasons for each med given to you, she will make good informed decisions for you.Good luck to you!

missfearless
06-17-2011, 08:39 AM
Hello, I'm taking my meds but having water retention. I am awaiting results for my kidney biopsy but prelim results show that my kidneys are 30% inflammed. I hope the kidney doctor I'm seeing next week will be able to identify and quickly solve the problem. The water retention is terrible! Everything from waist down is swollen.


Hello Missfearless,

How you feeling now in yourself and is your mom better about you taking the meds? xxx

lovedbyHim
06-17-2011, 11:58 AM
Im so sorry missfearless, going throughout the day with swollen legs and feet is truly uncomfortable and embarrassing as so many are in cute little handles .Ugh! I hate it. I know when my kidney was dumping protein my legs swelled even worse. Once the inflammation went down so did my swelling. I hope this for you. Now I am on several meds that cause fluid retention. I can't have quality of life without them so I am learning to accept the new me. To think I was asked to be a model and ran10 miles a day in my past, is hard to believe.

I prop my legs whenever possible and eat foods that are natural diaretics. Water pills don't help me as I had veins removed and the lymph nodes can't do the job. Hang in there dear. Just keep reading and educating mom.

Peridot20_Gem
06-17-2011, 04:16 PM
Hello, I'm taking my meds but having water retention. I am awaiting results for my kidney biopsy but prelim results show that my kidneys are 30% inflammed. I hope the kidney doctor I'm seeing next week will be able to identify and quickly solve the problem. The water retention is terrible! Everything from waist down is swollen.Sorry you've had to have a kidney biopsy and you've got fluid retention but what we use here in the uk which does flush your kidneys out as i used to pass blood in my urine through my kidneys...is drinking Barley water, if you could get a bottle of just Barley water and dilute it with water it will help your kidneys as it also flushes out any filth around your kidneys.

missfearless
06-17-2011, 09:47 PM
My mom gave me barley water practically everyday for the past month and the other day, cranberry juice but unfortunately the water retention still happens.


Sorry you've had to have a kidney biopsy and you've got fluid retention but what we use here in the uk which does flush your kidneys out as i used to pass blood in my urine through my kidneys...is drinking Barley water, if you could get a bottle of just Barley water and dilute it with water it will help your kidneys as it also flushes out any filth around your kidneys.

Peridot20_Gem
06-18-2011, 03:11 AM
Well if the barley as'nt helped then you need to wait for the outcome and i really hope it's nothing serious mate but keep strong in the meantime while they're finding out and i wish you the best of luck.

Hugzzzzzzzz you way Terri xxx