Sooo upset(Pills)

[lilsweety89]

<span style="font-size:11pt;line-height:100%"><span style="color:#CC33CC">Hi everyone. Im Quai, Im 15, and Im just writting in here cause I dont know what else to do. Im soo mad right now style_emoticons/<#EMO_DIR#>/hissy1.gif Im on predinsone and plaqunell ( I cant spell those stupid names,who made up those long names anyway) and some other drug and they make me fat and my cheeks look funny and they make me a lil crazy sometimes and tired and Im just so sick of taking them. Ive been on them for about two years now all the while being in highschool. When I first started taking the drugs I just started highschool and that was super hard! And today I was really excited tomorow I was suppose to go to a natural drug doctor and he would put prescribe me with natural drugs so I could be off the steriods! And then my mom tells me that we cant go anymore cause its gonna cost over $100 and she cant afford it anymore! Im pretty understanding and I NEVER ask for anything more than like a chocolate bar or some money to go out with my friends or a car (no im just joking about that one style_emoticons/<#EMO_DIR#>/tongue.gif) but yeah and this is all I really want. Ive never wanted something so much in my life (besides Brian but thats a whole different story style_emoticons/<#EMO_DIR#>/tongue.gif style_emoticons/<#EMO_DIR#>/wink.gif ) But yeah Im just really mad right now. I cant take being on these pills anymore. She (my mom,yeah right) promised me that we would go to these natural drug doctor in the beggining of may , whoever you are whose reading this probably knows that may is ending in like 2 days! Like I serously cant take being on these pills from **** anymore,its really hard and no one understands especially not my "mom". I tell her but its like shes doesnt really understand and I feel like Im complaining. And its hard,like really hard Im at the stage where all my friends are dating and stuf and Im not and I dont wanna sound shallow cause Im not but no guys wanna go out with me and I know its cause of the way I look. I think that they should just see whats on the inside but guys in highschool can be mean.And before when I looked normal and stuff I got asked out / And I just wanna get off these steriods so I can eat like a normal teenager and look like one too. Its so hard missing out on everything and Ive been doin it for 2 years and now im just at my breaking point..</span></span>

[cath]

Hi Quai style_emoticons/<#EMO_DIR#>/foryou.gif Nice to meet you style_emoticons/<#EMO_DIR#>/highfive.gif . I'm sorry you are having a tough time living with lupus and the meds.


Actually it might just be a good thing your mum couldn't take you to the natural healing doc. As a general rule, lupus is one disease you really need to treat with the drugs that have been properly scientifically tested where we have real evidence that they work. Some herbal medicines will in the furute probably be found to be helpful, and some will be found to be dangerous, but at the moment we don't have much scientific information about them. At best they might do nothing, but the worse case senario is that they might harm you.

How much prednisolone are you on?
Is lupus affecting your organs (kidneys, lungs, heart, brain)?

Do you know what your rheumatologist wants to do about you taking prednisolone?

Pred is a great drug that when you really need it can save your life, but it has lots of bad side effects (like the mood swings and hamster cheeks). The usual practice is to give as little as possible for as short a time as possible. If you need more than just plaquenil to keep your lupus under control, it might be possible to take another drug instead of the pred. Drugs called immunosupressants are sometimes used for people with SLE, to avoid or limit the amount of prednisolone needed. An example of an immunosuppresant is azathiaprine (imuran), or mycophenolate (mmf). Maybe you could ask your doctor what he/she thinks about these medicines in your case.

It must be very tough being a teenager and having lupus. You are right, boys that age (and girls too) can be shallow and mean at times. Still, the people who do become good friends will see past your illness. You probably can't imagine it now, but in a few years it will be quite different. The other teenagers around you will eventually become more mature and you'll be able to see who the people are that are really worth having as friends. Hang in there.

If there is something you want to ask us about, feel free.....

X C X

[lupy lulu]

Hello Quai,

Cath is so right about using alternative medicine.. if it dosent work or makes you more poorley then it would be straight back on the steriods at an even higher dose to get your Lupus back under control.

Things will improve for you and when the time is right the dose of pred will be reduced or stopped style_emoticons/<#EMO_DIR#>/biggrin.gif

I dont know any 15 year old girl who is happy with theyre appearace! I can remember thinking i was fat when i was your age and when i look back there was more meat on a pencil.

From just reading your post i can tell that you are a funny, intelligant young lady with a fantastic personality and at the end of the day this is truely what matters !!

Teenage years are so difficult without you having to cope with Lupus aswell but keep strong and most importantly keep well and at the moment that means taking your meds.

Sending Love Lucy x style_emoticons/<#EMO_DIR#>/wub.gif

[Helz Belz]

Hey Quai, My name is Helen I'm 20 years old. I was diagnosed when I was seventeen, and trust me I COMPLETELY understand exactly what you mean. It is so hard, and no one gets it!! They say the weight you gain on prednisone is the hardest to lose. it makes your face puffy. it makes you moody (I think I was actually scaring my whole family when I was on high doses). it makes you eat all sorts of terrible food (haha i was addicted to kfc and bk the whole time i was on it). and I can understand how very much you wish to change your medication. Trust me I understand. I was dating guys and going through the same thing, but you know what I've learnt? Any guy worth his weight in gold will love being with you because of who you are- and trust me, ur probably far more lovable when you're not flaring and losing hair and complaining of arthritis. For the entire time I have been on plaquinel and prednisone I have managed to have great relationships with guys. It does bring you down, but guys aren't that shallow, and they know when they've got a keeper. You gotta believe me. Prednisone and Plaquinel are life savers, they allow you to go out and socialise- I would be very hesistant to try anything else without a thorough consultation with your Rheumy. Any time you want to get in touch with me please let me know. I know it sucks, and I hope you can stay strong and remember: with a round face or a slim face you are the same person inside- probably better because you're not as sick style_emoticons/<#EMO_DIR#>/tongue.gif I think you are very brave, and I hope my words don't sound patronising or anything, I just want to let you know that there are people who go through the exact same thing, and who are there for you!
Can I also say- guys come and go, but going off prednisone could really affect your health in the long term and muck you up for when you meet the love of your life! style_emoticons/<#EMO_DIR#>/smile.gif
Keep Smiling x Love Helen x
ps: a little confession: about a year or two ago I was soo down on my looks I weaned myself off my prednisone AND plaquinel without telling my specialist- it is NOT worth it!!!!! needless to say I am very strict on taking my meds now! style_emoticons/<#EMO_DIR#>/cloud9.gif

[oesa]

Hi Quai - I'm Lisa, I'm 34 and was was diagnosed with SLE when I was 14, and spent the next 2 years on prednisone.

You're right, the side effects are terrible, and kids in high school can be shallow and mean. I looked like c*#p - no hair, chipmunk cheeks, stretch marks - but for me the final straw was when I developed osteoporosis and AVN, shrank two inches, and needed a back brace and crutches for four months. It sucked.

But sweetie, it does get better. Everyone else has given you good advice about things to ask your rheumatologist - particularly about prednisone-sparing drugs. Imuran (azathioprine or AZA) has been a lifesaver for me. I'm back to being me - in the long run, the prednisone saved my kidneys, and eventually put me into remission.

Lupus can change lots of things about you, but it can't change who you are, and you sound like a funny, outgoing, wonderful teenager to me. Hang on to that. You'll get through this time. Have you talked to your rheumatologist about how you feel about all of this? It's important that he knows how much you dislike being on prednisone, and it's also important that he can talk to you about being a teenager. My pediatric nephrologist was part of a team that really focussed on helping their patients manage all the other stuff that came along with a chronic illness - dealing with feelings about appearance, and relationships, and school, adn that really helped me a lot. If he doesn't help with that kind of thing, you might want to ask for a referral to someone who will. It doesn't mean you are crazy, it just means that you need some help in dealing with a tough situation, and who doesn't need help once in a while?

Hang in there Quai - we're here for you!

Lisa

[lildaddysgirl82]

Hi lilsweety89, Im 14 and I have been diagnosed with lupus just this past November. Yeah Im on all that stupiud medicine too and I HATE IT!!!!!! I have to take 40mg of prednisone everyday:( and it makes me bloat up so fast. I have gained like 50 lbs. from being on that stupid Prednisone. My mom tries to get me to drink alot of water cause if you do it kinda helps the Prednisone a little bit and she tries and sits me down so we can talk about my lupus situation but I don't like to talk about it much cause I hate the fact that I have it and that people might feel sorry for me and all that c*#p so i just keep it on the down low you know what I mean? They have this new surgery that I saw on t.v. for people with lupus. You just go to the doctor and they do some procedure and then the lupus is like not gone but it's better than what I used to be. But my mom said we might have to wait on that since I'm only like 14 and all. Well nice to meet you. You can comment me back if you want.

[Helz Belz]

Hi, I just wanted to respond to the last comment. two things: (and this is kind advice) the first is that you should welcome the support your mother is giving you, you will need it one day. maybe not today or 2moro but one day. my mother has become my main support and best friend, and it is very rare to find someone who understands and supports lupus. However I do understand the ostrich reaction "head in the sand" thing. I did a similar thing when i found out, so yeah. the other thing is what operation is this? I would find it amazing to think one procedure could 'fix' lupus? especially when it is so random? Are u sure it wasnt an operation to help one of the effects of lupus, like arthritis? Sounds a bit vague to me. But could be interesting so do tell!
Quai- i really hope u are doin okay! Keep smilin and stay strong!
Love Helen x style_emoticons/<#EMO_DIR#>/cloud9.gif

[ASmallReminder]

! I know this story. It's mine to. My doctors put me on prendisone and hydroxychloroquine when I was 17, My body swelled up so much that I couldn't fit into any of my clothes and couldn't even wear my jewelry. I got so sick of it that I dropped the prendisone but unfortunatly my swelling (2 years later) still hasn't drastically come down, i weigh 145 pounds and look like I weigh 180. I couldn't imagine being only 15 and having to go through something like that straight into high school, that really must suck honey and I'm sorry about that. I got stuck with the medication my senior year and I had become so sick that all I remember about my prom is throwing up from the stress and drugging myself so I'd be able to sleep in the limo. Exciting night huh. Try to take it in strides and enjoy high school as much as you can, don't let this weigh down on your mind you have the rest of your life to stress out about it.

If you ever need to talk send me an i.m.!

[cutiegirl132005]

hey i'm 14 and i have to take prednisone too. that pill is so NASTY i hate it but i have to take it

[GOOD2BALIVE]

hey girl, I'am 30 years old and i have had lupus since 1995 which is 10 years already, guess why i am still here alive and well because of prednisone and plaquenil those two medications keep your disease under control and that how you want to keep it because if you dont alot of things will get complicated especially for all of us with lupus, since our immune system is so weak and does'nt fight infections we can get really sick very fast, i am telling you this from experience i know its hard because you are so young and all but it is for your own good trust even if you're a little over weight, it'll go away eventually cause you wont be taking those meds all the time, make sure your mom tells your doctor for how long you will need to be taking them especially plaquenil because that med affect your eyesight you have to go see an eye doctor every year. Well take care of yourself which is the most IMPORTANT thing of all you're health worry about aperiances later, god made us all beautiful and if somebody will notice you it'll be because of whats inside wich is what matters. style_emoticons/<#EMO_DIR#>/ok.gif

[lilsweety89]

Wow guys,thanks for all the support! I didnt know that I'd get so much support and I didnt think people would understand but everyone writting all those nice things lets me know that people do understand style_emoticons/<#EMO_DIR#>/smile.gif so thanks! style_emoticons/<#EMO_DIR#>/Thanx.gif ummm keep the good comments comin people style_emoticons/<#EMO_DIR#>/foryou.gif i love it! and ive read every single one and im trying to take a bit of everyones advice so thanks everyone ,more people write please style_emoticons/<#EMO_DIR#>/smile.gif
Love u all,thanks so much
Quai
p.s. oh yeah i actually ended up goin to the natural drug doctor and im still on the pills the hospital gave me but with these other special pills style_emoticons/<#EMO_DIR#>/smile.gif

[Clare.T]

Hi quai
I don't like to even think how hard it must be to have lupus and be on these meds as a very young person.


Pred can save lives and is a vital part of the lupus meds repertoire but these days every effort is made to have people on it as little as possible because of the unfortunate short term effects and even more the bad long term effects.
The two meds that can reduce the need for pred are Imuran and methotrexate particularly imuran if it's to treat organ involvement like kidney disease or CNS lupus when the brain is affected. Ask your doctor if one of these would be suitable for you to try. People on Prednisone need to watch out for bone density and take calcium supplements.

Plaquenil very rarely affects the eyes but you should be getting them checked very so often as your doctor advises.

I am seriously concerned about you taking alternative medicines in case they interact with your present meds and have side effects that are not being checked for such as damaging the liver. Natural does not mean safe.

I would check out what they are and see what's said about them from reliable on line sites. Your other doctors need to know what you are taking.

I hope you'll be feeling better soon

Take care
Clare

[floydo]

hi Quai

my name is floyd and ive had lupus for about a year and a half now and im 13 years old. i also take prednisolone and have found they are disgusting to take and instead i take 5 small ones instead to compensate for the bigger ones and i dont dread taking my pills anymore.

i used to be on 60mg a day and now im on 25mg every other day and going down so im hoping ill be on a lower dose soon.

just remember that pills are there to help you get better and although they may not be the most pleasant thing (i take 13- 18 a day!) it would most cetainly be ever more unpleasant if they werent there to help you as your symptoms would all start and **** would most probably break loose inside your body (trying to put it nicely) so just remember that no one likes having a strange condition especially when at a young age and the complete oposite of the normal specifications of someone with the disease (im a young male, they had to double check who i was in the hospital coz im 'not meant to have it'), but its best just to try and not worry about it and enjoylife to the absolute full, it even sometimes gets funny, especialy when you try to explain itto new people and they havent got a clue what your on abut and they start thinking strange things.

just hold on in here and remember technology and research is getting us places these days and they may have a new drug soon or maybe even some sort of cure.

I hope your feeling top soon and i wish you well,
Floydo

[joyce21]

<div class='quotetop'>QUOTE(cath @ May 29 2006, 09:28 AM) Quoted post</div><div class='quotemain'>
Hi Quai style_emoticons/<#EMO_DIR#>/foryou.gif Nice to meet you style_emoticons/<#EMO_DIR#>/highfive.gif . I'm sorry you are having a tough time living with lupus and the meds.


Actually it might just be a good thing your mum couldn't take you to the natural healing doc. As a general rule, lupus is one disease you really need to treat with the drugs that have been properly scientifically tested where we have real evidence that they work. Some herbal medicines will in the furute probably be found to be helpful, and some will be found to be dangerous, but at the moment we don't have much scientific information about them. At best they might do nothing, but the worse case senario is that they might harm you.

How much prednisolone are you on?
Is lupus affecting your organs (kidneys, lungs, heart, brain)?

Do you know what your rheumatologist wants to do about you taking prednisolone?

Pred is a great drug that when you really need it can save your life, but it has lots of bad side effects (like the mood swings and hamster cheeks). The usual practice is to give as little as possible for as short a time as possible. If you need more than just plaquenil to keep your lupus under control, it might be possible to take another drug instead of the pred. Drugs called immunosupressants are sometimes used for people with SLE, to avoid or limit the amount of prednisolone needed. An example of an immunosuppresant is azathiaprine (imuran), or mycophenolate (mmf). Maybe you could ask your doctor what he/she thinks about these medicines in your case.

It must be very tough being a teenager and having lupus. You are right, boys that age (and girls too) can be shallow and mean at times. Still, the people who do become good friends will see past your illness. You probably can't imagine it now, but in a few years it will be quite different. The other teenagers around you will eventually become more mature and you'll be able to see who the people are that are really worth having as friends. Hang in there.

If there is something you want to ask us about, feel free.....

X C X
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