View Full Version : Hello new here :)
01-14-2011, 07:18 AM
I am new here my name is Shelly I only found this forum while googling once I read through posts I thought I have to join up!
So I am 20 years old from Australia I have had symptoms of SLE for the past 7 years it all started with me feeling tired and really fatigued then came the muscle and joint pains I was about 15 when I finally looked in the mirror one morning while doing my make up and saw a redish rash across my cheeks and nose I remember thinking what the? is that!
When to my GP was referred to a Rheumy who did blood work my ANA came back positive so did some of the other stuff he put me on prednisone and told me I have arthritis thats it just deal with it... I kept trying to explain about my other symptoms and my weird rashs from the sun etc he didn't listen I stayed on pred for while but it made me gain weight I never ever had any weight problems and was in high school at the time and you know how kids are they started teasing me about it so I decided to come off it.
Next big flare was when I was 17 changed rheumys got one who wanted to pescribe pred again I said no so was put on plaquenil it didn't help much upset my stomach was then put on methotrexate the vomiting and nausea from that was so bad had to come of it.
spent the next year or two going between doctors getting no answers none of them would say its Lupus so in the end I gave up stopped going to see them which was a big mistake.
Finally when I was 19 I had a major flare up that pretty much landed me in hospital with cardiac problems I was treated put on heart meds and told finally it was Lupus during my time in hospital they did alot of tests found out I had to much protein in my urine further testing revealed kidney involvement I was put on Imuran plaquenil and low dose prednisone.
It was also about this time my hair decided it would fall out and it just shedded my joints felt like they were on fire, the meds helped then they weaned me off Imuran and thats when my problems started again I started feeling sick was put back on it but it didn't help.
So now they want to try methotrexate again but I can't take the tablets they make me sicker I just found out about the injections this was news to me I didn't even know they existed!
so my doctors think it would be good to try them it just I am currently waiting for a appointment with my new rheumy I changed again cause the last one started not listening to me it is very frustrating dealing with this all.
My main symptoms are joint pain heart and kidney problems , weird blood counts, rashs and welts on my skin that cause scarring sometimes, hair loss and fatigue.
I am hoping to connect and talk with others just like me and gain info as I am really in the dark about alot things still.
I cant' work or study at the moment and my mother has litrally become my carer thats my story sorry it sooo long.
thanks for reading :)
Hi Serena! Welcome to WHL! I am so glad that you found us but am so sorry for what you have had to go through. Sadly it is not uncommon for people to go, like you did, for years without a firm diagnosis. You will find tons of threads in here about doctors not listening! It is one of our biggest complaints. They fail to remember that we know our bodies better than they do so we are stuck in limbo for months or years.
You have found a wonderful forum full of fabulous people and I am sure you will be made to feel welcome. Please make yourself at home and look through the old threads or start new ones if you wish. We are so glad that you found us and welcome to the WHL family!
01-14-2011, 11:44 AM
Welcome to our family. As Tgal mentioned, there are so many of us who can empathize with your story. Unfortunately, there are too many doctors out there who refuse to listen to us, to take our symptoms seriously, or to believe that we know our bodies better than they do.
One of the things that we do here is to help you to learn as much as you can about Lupus, its treatments, medications, and how it affects you personally. Armed with this knowledge, you will be prepared to be your own health advocate. As such, you will then have the tools you need to stand up to your doctors, to educate them about the disease and how it affects you, to insist that they listen to you and believe you, and to insist that they treat your symptoms appropriately. Do no back down and do not let any doctor brush you off.
You are doing the right thing by wanted to learn as much as you can. Knowledge will also help you to learn how to manage your disease and prevent flare ups. However, relapse and remission are a part of the disease and we all go through periods when our symptoms worsen and periods where our symptoms seem to be manageable.
I do hope that you are able to find a combination of medications that provides you with some relief from your symptoms with the least amount of side effects. But, you should know that it is virtually impossible to have one without the other. Our medications may relieve our symptoms, reverse some organ damage, or prevent further damage..but there will always be some side effect that we must learn to live with and most side effects are not pleasant. Methotrexate almost always causes nausea because it is a small dosage of chemotherapy/anti-organ rejection medication. Many have chosen to set aside an entire day when they take their weekly dose, knowing that they will be sick for that whole day. However, the other six days, they find that the Methotrexate provides good results.
So, we all have had to learn how to cope with our medications, to realize that the overall success of the medication outweighs the unpleasant side effects, and to re-adjust our lifestyles in order to reap the most benefits from our medications.
Many of the members here will be able to give you some excellent advise on how to best manage your medications, as well as how to re-arrange your lifestyle in order to best manage your disease.
We are here to help you as much as we can and in any way that we can. You will find this site filled with wonderful, caring, and understanding people. Again..welcome to our family :-)
Peace and Blessings
01-14-2011, 05:27 PM
Im so glad you found us as many members here can identify and hopefully help you in some way of support for you.Im sorry to read about everything you have been through so far,but hang in there.I'll catch up with you soon but wanted to welcome you.
lots of love
01-14-2011, 06:25 PM
Welcome to our large family of the WHL and there's so many threads to help with different things.
I really feel sorry for what you've gone through, my problems started mainly from 14yrs onwards like seizure's etc which lupus causes plus i was born with it and i'm now 42 and have recentley been diagnosed with Raynauds and lupus besides other diseases connected to it but the skin problems your having is Raynauds disease and it is a nightmare in itself, steroid based creams are usually given but not for long as you need a rest in between but they are great for moving it plus the soreness.
We're all going through with what your suffering so we do understand, so come on and chat away or cry whenever your down as there's always someone with an helping ear.
01-15-2011, 05:56 AM
And welcome to WHL!! So glad you've joined!! And you story sounds so simular to mine.
Mine has been 7 long year's of weird symptoms going from skin symptoms to organ symptoms,
Doctor to doctor, that half never listen. Test after test, and left them all scratching ther head's
and trying to figure it out they just kept saying it's something auto ammuine going on.
My ana would always come up positive and elevated wbc.and the test for inflamation would come back slitely elevated at times but the rest of the test for lupus & sjogrens kept comming negative even though i was so sick.
I also have hair loss, weird skin hives,weight loss4 lb's in 3 days, severe back & knee pain,
skin rashes and little sores, severe muscel spasam's and pain& on & on!
My reumatologist just put me on predisone 40mg a day and i just started the Imuran yesterday
becuse either the lupus or sjogrens has gone to my brain causeing cns vasculitis, there thinking it's the sjogren's so just had a lip biopsy to try and conform sjorgens cause my blood work for sjogrens keeps comming back neg, But i have all the physical symptoms of it.
There are wonderful careing people here!! And lot's of great information!!!
They have all surley been a great help and blessing to me in my scared and trying times
during this whole diagnosis process!!!
Again welcome! And Gentle Hug's to you, hope you have a great day!!! Love Diane,
01-15-2011, 07:54 AM
Hi Serena & wlcome to our wonderful family! Everyone here is so great! I hope that the injections work better for you. There are a lot of threads about methotrexate, including one entitled "It's M Day" which has some wonderful info in it. (((Hugs))) and best of luck at the appt!
01-15-2011, 04:04 PM
hi serena welcome to whl i am also from sydney and have being diagnosed with lupus 3 years ago although they think i have had since i was a child but since there is no specific test it took them that long to find out i take plaquenil, prednisone, mexotrexate which i know does cause stomach upset i usually take stemetil for nausea, i to cannot be out in sun long makes me dizzy causes rash and itching,i also had hair loss, chest pain i am on cardizem for heart i have had chest infections and protein in urine and kidney infections. fatigue problems aching muscles swollen joints and thyroid problems and this has caused me to be overweight i am a 45 year old married mother of 3 children i know it is daunting but just know we are all here for you and if you ever need to talk you can private message me anytime i live in western sydney. let me know if you can get the injections because i would prefer them to if they were available many hugs and good wishes kim l
01-18-2011, 09:30 AM
I hope your keeping ok?? and hoping your coping, as it's such a terrible thing for us all but at least we understand your troubles and what your suffering.
Hugs Terri xxx
01-20-2011, 07:00 AM
Hi everyone Thanks for the welcomes :)
Sorry it has taken me awhile to reply been really ill the past couple days...
Tgal -I totally agree that we know our bodies better then the doctors do if only they would listen more! thanks for the welcome
Saysusie- wow you given me so much info already thankyou!! you are right I am not going to let doctors brush me off anymore I am just going to keep pushing them till they work with me! thankyou for welcoming me :)
Amanda- thanks for the welcome :)
Dianne sorry to hear you been through so much to your symptoms do sound alot like mine I hope everything goes well for you with the Imuran thanks for the welcome:)
Red- thanks for the welcome I'll check out the M day thread for sure.
Kim thanks for welome sorry to hear you been through so much too I will let you know for sure if I can get the injections I also get dizzy when I am out the sun too long actually fainted couple times... I also live in western sydney you totally understand when I say it get hot during summer out here.
Hi Terri sorry to hear what you been through thankyou for welcoming me I am sorta barely hanging on by a thread at the moment I just feel so tired which is nothing new it just worse then ever.. I don't know much about raynauds that you mentioned I will google it is there a blood test they can do to help test for it or anything?. I am so glad everyone understands here.
01-20-2011, 09:38 AM
It sounds like we're in the wars well mate and i was'nt happy today seeing my epilepsey nurse as i've been building my hopes up to start plaquenil if my Rheumo doc lets me when i see him next tuesday but avril my nurse said the plaquenil will work with your meds no trouble but my main concern is it does make you fit more but i've told her i'm not touching anything else and if my fits get worse i'll pull off it and she was ok with that, knowing after 25yrs i know how to withdraw from meds, had so much experience over the years it's pure madness.
Well when i was diagnosed with Raynauds it was my skin specialist who told me through the state of my fingers and skin on my face and furthur blood was took to see how bad it was, ask them to test your blood for Raynauds Diseases as there's 2 levels to it.
All the best mate and i how you've had a better day today.
Love Terri xxx