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biancavizz
11-27-2005, 11:36 AM
Hi there. My name is Bianca and I found out I had Lupus when I was 16. I'm now 17 and not to seem like a hypocondtraict but I wake up stiff and go to bed in severe pain. Some days the pain is so bad in my knees i can't walk. Will this worsen, or will this go away? I don't want to be in a wheelchair, but I know of a girl that is in a wheelchair because of Lupus.. are any of you?
Does any one know of a good non-steroidal script besides Naproxen, Codine, and Diclofenac? Maybe a good steroidal script too?
Thank you for reading, -Bianca-

silverlioness
11-28-2005, 01:14 AM
I was recently having horrid pain in my knees and thinking the worst. I thought and thought if it could be anything other than knees being permanently ruined. I have these really cute and uncomfortable shoes that I always wear (chunky heeled biker shoes). I decided it may be them and started wearing my tennis shoes. A week later my pain was back to being occasional instead of constant. Boy, was I relieved. Stupid shoes (and fashion).

My doctor had me on Plaquenil (Lupus management) and Celebrex (anti-inflammatory). That combo worked very well for me. I went off of all drugs to try to get pregnant and that messed me up. I'm taking tramadol (pain management) right now. I'm going back to the doctor this week to hopefully go back on the Plaquenil and Celebrex. I'm going to ask to try a low dose of steroids (5 mg) for a week to see how that makes me feel. Some of the other members of this site said steroids worked miracles for them.

I'm like you and freak out sometimes, but I have to try to live life for today and not worry about tomorrow (it'll drive you crazy). Think of it this way -- we could all be well tomorrow (positive thoughts). One thing scientists and spiritual teachers agree on is that our mind controls our body- the more we think sick, the sicker we are going to be. God bless you!

mommymc
11-28-2005, 12:10 PM
Bianca:
Reading your message brought me to tears. I am a mother whose child has Lupus. My 13 year old daughter has Lupus, severe myositis, and arthritis. She was dx in June 2005. She had some of the very same issues that you described. She couldn't move and everything always hurt. She couldn't get up, walk, go to the washroom, nothing. She was in a wheelchair before being diagnosed. BUT NOW... she is now able to walk (without any assistance), and do her own personal hygiene,( she has trouble washing her hair) !!!
Plaquenil and the Prednisone have helped her alot with other medications.(She also goes to the arthritis centre for physical therapy and ocupational therapy. )After about a week on them there was a great difference in her mobility.
Please ask your GP or Rheumatologist for blood work and medication. Seeing as you are only 17 you should be able to go to the Children's Hospital to get treatment. Perphaps asking your parent or a close relative to help you find a doctor, if you don't already have one.
You are in my prayers, hang in there! :D There is a lot of support here for you as you will see I'm sure in the next posts. Take care!
Mommymc

biancavizz
11-28-2005, 12:32 PM
oh thank you both for replying, you really did lift my spirits!

Mommymc: i am very sorry to hear about your daughter. if she wants someone younger to talk, i am more than willing to! i hope she gets better and tell her that i sincerely mean that i will talk to her if she wants, or you, because i know that it's also hard on parents. My dad bought this book "Lupus Answers" if you'd like, I could send it to you. They (my parents) found it helpful.

Silverlioness: thank you for your post, it also made me feel better. Although, i do not wear any high shoes, just my running shoes and wool slippers :P do you find being warm makes the systems less harsh? Is celebrex the one with kidney side effects??

I'm not sure where everyone is from, but i'm from Ontario, Canada, and ther closest doctor for me is Dr. Pope in London. She's great, but it took me 8 months to get in to see her last year! My family Dr. is prescribing me many medications to try, but none of them seem to lkast more than a month because my system gets used to them, as im sure most of you have been through. I'm staying away from Prednisone only because I'm just at the prefered weight for my height (5"3, 141 pounds) and when my dad took prednisone he literally gained 25 pounds in 5 days and it ruined his vision, and now has vision problems and low and behold i already have like -5.75 vision.. But the good news is that i have a doctor's appointment this week and she will be giving me new meds.
I'm off to do homework, thank you very much again! bye! xOxOxO

silverlioness
11-29-2005, 11:55 AM
I think Celebrex can be hard on your kidneys. I'm not sure though; ask your doctor that one. I can't stand being cold, so for me warmth helps. I've stayed away from steroids this long for fear of weight gain too. That's why I thought I'd try a low dose (they promised me that wouldn't cause weight gain).

mommymc
11-30-2005, 12:49 AM
Bianca:
You are a very well spoken youn lady with a very kind heart. I so appreciate your kindness in sending me the book, "Lupus Answers". I just read two new ones that were at the Lupus Symposium that was last month here in Vancouver BC.

I wanted to ask if you are going to Toronto's Sick Kids Hospital? I have only heard wonderful things from our Rheumatologist and staff atBC Children's Hospital (where we go). Being so young, are you being monitored with lab work every month? Do you have a support group for yourself?

Also, do not be worried about your weight. Iknow it is easier said than done. If prednisone works to make you healthy, that is what is important. You are important!!! After 3 day pulse treatments off 1000mg IV, she has been on high doses of prednisone we are at 25mg. for the last 3 monts. My daughter went from 113 pounds to 165 pounds since June and she is 5'6".(mind you she did lose 37 pounds just before being dx.) But the weight will come off, really. I would rather have her alive without pain and overweight, than not having her at all.

Please be kind to yourself. Be Happy!
Mommymc :D

biancavizz
11-30-2005, 10:05 AM
thank you very much for saying those things. I'm from Windosr so i've only been to London once so far but i'm trying to go again, it took me 9 months to get in last time so.. i didn't know that there was a symposium or anything in Toronto. but thanks, i will ask my doctor for that information or if you cvould please fill me in that would be really great!
There is no support group in Windsor, that's why I wanted to find like amessage board (which i did) to talk to others like me. and thank god i did, you guys are so much help!! Thank you!!

Yes, i'm doing blood work every so often, in fact i have an appointment today to talk to my family doc about my breathing problems and leg problems. Hopefully she'll send me for some x-rays or something. She's not very smart in the field of Lupus because it's not her specialty unfortunately. But it's not her fault. I'm going to ask her to send me to London to be under the care of Dr. Pope. She said she'd take me as a patient so *cross your fingers please* thanks again! it means so much!

Your daughter is very strong and very TALL, lucky girl!! 5'6 wow!! i'm 5'2!! lol tell her i hope she feels well what with the cold weather coming and all. Things should get a little stiff soon, but hot chocolate can always be a quick fix ;) bye!!

traceeo
12-09-2005, 03:15 PM
I am 20 yrs old, and was diagnosed when I was 19 (So last Feb). When first diagnosed I was immediatly put on Prednisone 40 mg/day (I'm 5'9, 140 lbs). It isn't a drug that you want to be on longterm though. I eventually tappered off of it after 9 months because low doses weren't making me any better, only the high doses which is very risky to stay on. I also take Prednione.

I did take Celebrex for a month or so but my specialist from Vancouver said to get off it ASAP because I'm at such high risk of blood clots. So if your ANA blood counts are part of your Lupus then its something you should consider.

Many people LOVE prednisone and it is a great drug. Theirs no reason to worry about the changes that will take place. I didn't gain any weight but I was very catious of what I ate. I tried to have no fast food and eat lots of fruits and vegetables. My docter was very impressed and he said alot of the time its because it makes you hungry you just overeat even though you are full. It's alot of the time mind over matter. I did experience a bit rounder of a face (I already have a pretty round face though).

Something I recommend for the pain is something called "Bone Therapy" Its like a massage but different, I can't even explain it. If you look it up on the internet I'm sure you could find someone in your area that does it and it is AMAZING. I pay $1/1minute and a session usually is 30-45 minutes every 7-10 days. I had gone for about 5 straight months and now I just go every so often. I know a lady that has had chronic pain for years and she just started it and she is so thankful of me telling her about it. I first discovered it when I fell on my back at work when I was 18 and WCB had put me through a rehab program. Then I remembered once diagnosed with Lupus that its good for pain management.

Another drug that I just started taking ONLY when in a flare is Tramacet, its a new drug to Canada but I wanted something that wasn't a daily med. (I still do take Plaquenel daily though). I had asked my dr if their was something I could take only in the flares because my next option of drug to try is Imuran and I'm very leary of taking that at such a young age.

Anyways I hope this helped and for being so young and being faced with such a hurdle I just encourage you to stay really positive and don't forget to laugh! Their will be some adjustments you make to your lifestyle but I just remember this quote "When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us."

biancavizz
12-10-2005, 11:17 AM
Traceeo:
Thank you so very much! I'm gonna get right on looking up the "bone therapy" thing you suggested. You are very young as well.

If I had it my way, i would try newer drugs, and even steroid drugs, but my parents are kind of against it right now. And prednisone made my dad lose some eye sight! creepy! But thanks again and i will definately think positive!
-Bianca-

traceeo
12-10-2005, 08:04 PM
Hey I just wanted to apologize, I was tired when I wrote that and it is called BOWEN therapy...I re-read what I wrote and it made me laugh of my mistake, I apologize.

Tracee

wee
12-22-2005, 12:47 PM
I was just diagnosed with lupus in October, I just turned 25 on the 18th. I am now on prednisone 10mg (not enough), new to imuran and I'm on plaquenil. Apparently imuran is almost like plaquenil, my rheumatologist didn't want to increase the prednisone dosage.
I worry so much about my illness sometimes or anything else, I was suggested to get the Anxiety + Phobia Workbook by Edmund Bourne by a counsellor from work. I still have to get the book :lol: