I'm new to this forum - age 29 - diagnosed at age 17
Hi, I'm Laney from Jacksonville, Florida. Although my mother and I can remember symptoms starting when I was about 11 yrs old, I was first diagnosed with Rheumatoid Arthritis when I was 14 yrs old and then a few years later, when I was 17, they determined I in fact had SLE not RA.
I've always felt pretty fortunate, as lupus patients go. Outside of a few serious complications and a couple of bad times, I've done really well managing my illness for most of my life and lead a mostly normal daily routine.
I did go through 6 years of the dreadful prednisone. Ballooned in weight and had a lot of other problems, then finally weaned off of it for good. Now I just do periodic boosts of it when needed. It's a great drug with horrible side-effects.
I really have been fairly good most of my life, compared to other lupus patients I've known. However, in the last year or so I've seemed to have a lot of little problems coming up - more rashes and joint pain. And then the last couple of months my joint pain has become so bad it's nearly unbearable. I'm fortunate to be able to work from home a lot of days, since I do most work from my computer. But it's very difficult and disheartening feeling so old when I just turned 29 last month. And to feel so isolated and alone at times.
My fingers, wrists and shoulders are almost constantly aching these days. Although joint pain has always been my main issue, I don't remember ever having pain anything like this before. And no anti-inflammatory has helped me lately - I swear I've tried them all. So now they've started me on Methotrexate, which is supposed to be great with joint pain. But you only take it once a week and it takes 6 weeks or so to start kicking in. So we'll see what happens - I just started it last week. I'm also taking Plaquenil, which I've taken since I was 14. I'm also on Zoloft now, which has definitely helped with my depression.
I'm single with no children and often wonder how in the world I would ever be able to take care of a family when so many days I can hardly care for myself. I really want a family one day.
It's nice to see this site and to have the opportunity to talk to other lupus patients.
Hope you are all well - Thanks for reading!
I was diagnosed last year. But I can now reckognise symptons from years back.
Do you get flare ups often? How do they effect you?
Hi Jennie -
I flare every now and then. Since my diagnosis many years ago, I have had issues here and there. I had a few serious hosipital stays but in the last few years I was doing pretty well. Although the last few months things have started getting worse and then the last few weeks have been my worst in a really long time. I'm just having really awful joint pain and fatigue. But usually I do well - so I'm hoping and praying I get back to my healthier state and stay there!!
How about you?
I hope you feel better soon. Its such an unpredictable disease. I get bad joints too. My last bad flare was at Christmas.
Have you had to increase your medication this time?
My dr just put me on Methotrexate. I take 5 pills once a week. I just took my second dose today - so I'm not feeling the benefits, unfortunately. I've been taking Plaquenil for 15 years. It used to help a lot, but I feel like I've almost gotten used to it now and it doesn't really help like it used to. I am remaining positive and hopeful that things will start to improve for me soon. I have always overcome these stupid flares farely quickly - so I'm thinking that this will blow over soon! I hope!! I can't take much more of this!!! I feel so much older than 29 right now.
I wish they would find some better long-term treatments for lupus - or a cure even. We shouldn't all have to deal with this daily aggravating disease!!
I hear you,
I'm 36 and when I see healthy 36 year olds getting on with there lives, I get a little jealous. And I also find it frustrating trying to explain to people why I can't do certain things. I sometimes feel like a broken record.
I'm on Plaquenil as well. I don't know if its doing anything either.
How's the flare going? I hope its getting better.
Welcome Laney! My sister was misdiagnosed with RA before they figured out it was mild SLE also. I'm 27, and have been dx for 6 months. I really just have Type 4 Lupus Nephritis. I hope someday to be able to go on Plaquenil (that's my goal - to be healthy enough to do Plaquenil!) I'm on Cellcept, Prednisone, Lisinopril, Prevacid. The good news is that after 6 months on Cellcept, it looks like things are finally starting to turn around. This is great, as last week I had settled into the fact that I was probably going to be dealing with progressively worsening kidneys my whole life. So, it's been a great surprise. The Prednisone makes me turn borderline diabetic, so I'm hoping to start weaning to a lower dose in two weeks, not that things are looking better (I'm on 30 mg a day now). I was able to avoid the Cytoxan, so theoretically I might still be able to have kids, but I get worried that, if I do have a remission, that my kidneys will act up again, and what if I can't get it into remission again. We're thinking more adoption now. I do get jealous of my friends sometimes, when they talk about having babies in a year or two, like it's so easy to get pregnant and make those decisions. They don't have the complications I do. It's particularly frustrating because I used to teach preschool, pregnancy and child nutrition classes, breastfeeding classes, so I think I'd make a pretty good mom! Oh, well. But I haven't had depression problems (knock on wood) - I think it's because I learned a lot from when my sister was dealing with it, and I decided that I didn't want to suffer with depression the way she did.
Wishing you health and good days !
Hi Missy -
I'm sorry to hear about what you are going through. I always felt fortunate to have never gone through kidney problems. I've heard how hard that can be. And I went through 6 years of prednisone - so I feel for you on that. I hope that you get healthier soon.
I understand about the pregnancy thing. I got married when I was 22 only for a year and a half. But we were trying to have a baby and I miscarried three times because of antiphospholipid anitbodies causing blood clots. It was so hard to deal with and just so sad.
Now I'm 29 and single but have come to terms with adoption being a very real possibility and I feel really good about that. I have always known I would be a mother and whether I give birth myself or not is no longer important to me.
Although I do have the very real concern, as you did, of how in the world am I going to be able to care for an infant when I feel like this for days on end? It's a very scary thought. My joint pain is so bad right now I can't even drive my stick shift car. How would I be able to care for a child?
I can only hope things will get better for both of us, and everyone else suffering from this horrible and misunderstood disease. I hope and pray for more advances in treatment or even a cure!
I hope you are getting better, Missy. You are in my thoughts.