View Full Version : New to site, 23 years old UGA student, systemic lupus

07-23-2011, 04:32 PM
My symptoms started last october with severe shoulder pain/arthritis, I couldnt lift my arms at all, went to my regular doctor and they did some bloodwork ...i tested positive for ANA and they said i have an autoimmune disease but didnt know what it was... started me on prednisone and referred me to a rheumatologist (fresh out of med school) who later diagnosed me with rheumatoid arthritis and prescribed me plaquinil and began weaning me off of the prednisone (this was 4 months after i had started it)....after taking the plaquenil for 2 weeks i was rushed to the emergency room having myoclonic seizures,...my rheumatologist took me off of the plaquinil and then put me on arava.....one week after starting the arava, i was sleeping 20 hours a day and throwing up everything i ate, anemia and severe malnutrition as a result and my albumin levels dropped so low that my leg muscles gave out and i couldnt walk for a good 2-3 weeks, missed a lot of classes, had to quit the dance team, etc.. ....i decided at this point that i wanted a new rheumatologist and found one with 41 years experience...he did a full blood panel and concluded that i have systemic lupus and started me on methotrexate which i have been on for 6 weeks, he also doubled my prednisone dosage to 20 mg a day .....two days ago i had blood work done to check my liver function and he said that if everything looks ok with the MTX that i will be weaned off the prednisone starting next week...ive lost a good amount of my hair and i'm not sure if thats from the prednisone or the MTX, but i'm hoping it will grow back when i start doing the prednisone taper....
i dont really have a specific question about anything, just looking for help/encouragement/suggestions/advice...

07-23-2011, 04:44 PM
Hello ugaballerina,

A nice warm welcome to our lovely large family of WHL and nice to have you with us...there's so many threads connected to Lupus and the symptoms it can cause, i am sorry to hear you've been through the wars and back.

I've got systemic Lupus like yourself as you'll see what i have in my signature A1 Diseases overlapping Autoimmune Diseases...i'm on plaquenil like yourself besides being an anaemic and also suffering 2 forms of seizures from when i was 18 and now 42, i was diagnosed 3yrs ago after loads of bloods and x-rays and my rheumo told me i'd been born with it, as mine was inherited off my parents and i've had loads of symptoms over the years connected to it and never new.

I will admit it does slow you down and you do get some pain at times and the drugs can only do so much by surpressing the immune system but it does make you suffer with a foggy brain also besides wanting to sleep.

What i suggest is take things slower than what you used to doing and pace yourself, try not to get to stressed or depressed as Lupus thrieves on those and can cause you to feel symptoms more and it also makes your bloods fluctuate where you can get false readings some times.

It will be great getting to know you and everyone is so responsive and will help as best as they can.

Hugs Terry xxx

Linda From Australia
07-23-2011, 04:50 PM
Hello and welcome to WHL.

I have noticed that you have made multiple threads with the same content. This thread you have made is the correct one as you have posted it in the New Members forum. It may get confusing when people reply to the same posts but in different threads. When anyone logs on, they will click the “What’s New” button and any new thread will come up for anyone to read. Also when people post on your thread they will be able to see the new posts there as well.

First of all I am sorry you have been through a rough time with your treatment. I do hope now with a more experienced doctor, things can start to settle down. There are quite a few young members here that you will be able to form close links with, and quite a few of us old members (in age I mean) that can do a bit of mothering for you. There are also a few older dads and uncles here as well, who as very good at offering support. Please have a look around the different threads and learn as much as you can. YOu can also ask as many questions as you like hopefully someone will be able to direct you into the right direction. Just keep looking at your post to see the replies.

With the other threads you started, you might want to find the edit button underneath your posts and fix them up so people don’t get confused.

07-23-2011, 05:47 PM
Welcome =) Im sorry you've been going through so much but so glad you found this forum its helped me so much since I was diagnosed and the people on here are like family. I am just starting college, and just graduated after being really sick and missing a lot of school too. I hope that this new combo of drugs along with the new rheumy will get you back on your feet again.

07-23-2011, 06:23 PM
Welcome to WHL :) I'm sorry you had to find us, but glad that you did. It certainly seems that your doctor had no bloody idea what he was doing... it's a good thing you've changed and seem to be having better results with your new one. Doctors can be such idiots sometimes. Are you still managing to keep up and stay in school with all this going on?
I sure hope so... wishing you the best - hopefully things start to shape up once you have the right combo of the right meds at the right doses. Feel free to browse around everywhere here, to get a good feel. Since you're relatively new to the disease, you'll be happy to know and be able to talk to people who have lived with this disease for years, and are dealing with it.
Best of luck, look forward to seeing you around (:

07-23-2011, 08:09 PM
hi, and welcome.

07-23-2011, 08:45 PM
Nice to meet you! Welcome to a great group of people. I was sick in my 20's and I am now 53. I wasn't diagnosed with SLE until about 5 us ago.