I don't have my official diagnosis, but here are my labs that are relevant:
ANA 1:80 Homogeneous
Complement C3 65, C4 8
SM/RNP 3.1
DSDNA <69
From what I have been able to gather, this looks like positive labs for either Lupus or Mixed Connective Tissue Disease. I see my rheumy again on the 12th, so my guess is I'll be getting something more official at that time.
So, what do I expect from this?
Currently, I'm having a really hard time with work. However, I am not on any medications whatsoever just yet. Is it reasonable to expect to need to scale back from my full-time job, or at least look for more flexibility than I currently have? I am a High School Choir Director, so 6 day weeks and 10-hour-plus days are pretty frequent. It's a very demanding job and I am on my feet all day. I love what I do, but I am finding that I have absolutely nothing left for my family at the end of the week. I have disability insurance that protects 66% of my current income, so I wouldn't leave my family destitute by going out on disability. If I continue feeling like I do right now, I don't think I can keep up with the pace my job demands. Do the meds help enough that it would be reasonable to think that I'd be able to keep working at my current pace once the medications kick in?
I know that some people are able to continue working full-time. How common is that? Is it more common to be able to keep working, or more common to have to scale back?
When I was diagnosed with lupus, I was put on plaquenil (chloroquine) that day. It takes about 3 months to kick in. One of the side effects is lethargy or tiredness, which I got. I was already tired . Luckily, I wasn’t working. No one gets told to stop working that I’ve ever heard, you have to decide that. The plaquenil helps a lot for most lupus patients, not all, butmost. If you were to get as exhausted as I did, you may have to cut back on work, but I seem to react strongly to drugs that don’t give most people problems. I worked while taking other drugs with equally strong side effects.
Lupus is so unpredictable that it’s often a waste of time to worry about what might happen? So art doctors. But the rheumatologists use a lot more than a low positive ANA, and if I remember correctly, that’s what you have. Maybe someone else knows better than I about that number. I was not diagnosed the first time I had low positive ana test. They look at the Lupus Criteria.
For me, my experience on plaquenil (hydroxychloroquine) was a miracle. It took 2 1/2 mos. to start to feel something and by 3 mos. I had the energy of a “normal person.” I feel like I have my life back. But every individual experiences something different. Who knows how long this will last…(it’s been 3 mos. of feeling good)…but I’m enjoying any day I wake up and feel good…and take full advantage.
Thanks. Jane, I have more than just a weak positive ANA. I also have low complement levels and SM/RNP levels that are three times the normal limit. Combined with my symptoms, I meet the diagnostic criteria for either Lipus or MCTD. Iin my mind, which one it is doesn’t matter a ton, since it looks like the treatments are basically the same.
I’m glad to hear that Plaquenil helps so much for some people. That gives me some hope that once I get on some meds, I’ll be able to continue doing what I’m doing for at least a while. I will float the idea of taking a short-term leave while the meds kick in and see if my dr thinks it’s a wise idea or if he thinks I’ll be able to just keep plugging.
Hey Lindsey!
Sorry you have not been feeling well, and yes, you definitely have the positive blood work to prove it.
The plaquenil took about 3 months before I could tell that it was somewhat working. I do also take Cellcept, Prednisone. If you do get started on Plaquenil just be sure you take it after you eat, with food. I work in healthcare (nursing) on my feet. It was hard being and working on my feet! I finally had to take on a sedentary job 14 months ago. However, I still was feeling poorly so about 5 weeks ago I stopped working. I have disability insurance at work, which I qualify for. So I did that, and I also filed for SSDI. I am 51 years old. I hope you do find some relief soon dear. Take care!
everyone's lupus is different, I worked with it for about 20 years, I've been on ssdi for about 7 years now, it all depends on how bad it is, what it effects, everyone is different there's really no how to or what to expect book when it comes to lupus you have to be your best judge as to what you can and can not do, my only advice would be listen to what your body is telling you, be your own advocate.
I have been on Plaquenil for two and a half years. I feel great! I am exercising again. I feel good. My question to everybody is should I keep taking the plaquinil or stop it? I’m worried about the side effects.
I have been on Plaquenil for two and a half years. I feel great! I am exercising again. I feel good. My question to everybody is should I keep taking the plaquinil or stop it? I'm worried about the side effects.
DO NOT STOP taking the plaquenil. I tried and I felt awful in just a few weeks and even now months after resuming the medication I still feel really bad. Lupus is nothing to mess around with. Don't learn that the hard way look I did.
I am having the same issues. I am blessed with a company that is really understanding and flexible with me. However, my days of working 10+ hour days are over. Sometimes I still try and pull it off and then flare up like mad for days after. I’ve got to leave something left for my family and myself, which can be very frustrating.
I was a teacher for years. I CAN no longer work, although the help me from being bedridden. My advice is give the meds a chance if you enjoy your job. I miss working every single day with my children grown. I now live in Hawaii with the most amazing husband and he does his best to keep me “in the know” about outside events but the human interaction cannot be underestimated nor should it be dismissed. By far this was the hardest part of my disease. My goals are to be able to cook dinner one time a week, although it’s hit and miss.
What I am getting at is don’t give up anything you enjoy without a fight.
I would not go off plaquenil. It isn’t the kind of medication that takes you out of a flare and then you’re fine for ages, which some of the biologics can do (though not for me.) After the initial months, it works well. I have had to go off it after about 18 years, and I’ve just been sicker ever since. A lot sicker. And it is important to take it with a meal, I agree.
I think I am coming to a solution in my mind. I hope it works.
I think I'll take a short leave of absence from work to try to 1) get any more testing done before January 1st and 2) give meds a chance to start working. If I take a 6 week leave, that still leaves quite a bit of FMLA left for intermittent leave if I need it.
I'll run this by my doctor on Wednesday and see if he'll sign off on it. Hopefully he will. I think that if I'm proactive about taking care of myself now, I have a better shot at being able to keep working in the long run.