Anyone living with Lupus?

[fastlayne224]

On Tuesday morning I had an appointment with my primary physican to discuss my ongoing joint and muscle pain, extreme fatigue and other issues. I have been keeping a symptom and pain journal since the first of the year and it has been consistent in its symptoms. Earlier in the year he had tested my thyroid to make sure it was working properly and it was. My gastric bypass doctor also checked my B12 and thiamine and I started shots, but nothing eased my pain and fatigue, in fact it has gotten increasingly worse. My doctor ordered a bunch of blood work, I am going to have an CT scan or MRI next week, (the doctors office is working to get me in and they are supposed to call me today to let me know where to go), they made an appointment with my gynocologist for next Thursday, so that he can perform a breast and pelvic exam and check out my swollen lymph nodes just to be sure.

My doctor said he thinks it is a moderate to severe case of Lupus with an onset of arthritis, does anyone here live with Lupus or know someone that deals with this? I am 31, will be 32 in July and I feel like I am 100. I had gastric bypass in September and have lost about 100 pounds, everyday I get up and want to climb mountains, but the biggest mountain I can climb right now is rolling out of bed and taking care of DD. Any tips on how to deal with this?

P.S. I should also mention that while I did have gastric bypass which severely limits my intake of food which could cause some of my problems, I consume 800-1000 calories daily with lots of protein, fresh veggies and fruits and moderate carbs and take daily vitamins and calcium supplements. Both of my doctors (primary and gastric) don't think this is coming from my diet.

Thanks,
Erica

[Jen B.]

I'm sorry your going through all this. I hope they can figure out what is wrong with you. A good friend of mine was diagnosed with lupus about a year and a half ago. She was in the hospital for weeks before they figured out what was wrong with her. My mom has rheumatory arthritis. Both are on a drug called Prednisone. If you do have lupus you'll most likely be put on that. I'm actually on it right now for my so called "virus". In other words docs don't know whats wrong with me. Its in my "I can't stop itching" thread.

Again, I'm sorry your feeling so ill. :(

[SweetRed]

First of all, I hope that you get answers and relief soon. I am so sorry you have to go through this.

My father has been living with lupus and rheumatoid arthritis for the past 24 years. I remember the early days all too well, when a man who used to run and bike took over 15 minutes just to walk across the kitchen. It was so hard.

It took the doctors a long time to find a combination of medications that worked for him, but once that happened, he was much better. His problems now stem from the early medications he was on that caused scarring in the lungs and stomach lining issues. Let me assure you that even though I don't remember the medication names, they are no longer used for lupus patients (I don't want to scare you, but want to describe why he is the way he currently is).

There are varying degrees of lupus, which I'm sure you know, and he has not had any direct attacks on his organs, thank goodness. So for people like him, with the right medications, it's possible to get back to a normal life. Some days are definitely better than others, and on some days it's really bad, but he's just learned to get through the bad days because he knows better ones are always ahead.

If you're doctors are really narrowing in on lupus as a culprit, you might want to contact your local chapter of the Lupus Foundation (http://www.lupus.org/chapters/locator.asp\) for more information. I remember my mother relying on them heavily in the early days to get good information and make sure Dad was getting proper care.

[diam124]

Just bumping this up...I had some routine bloodwork a few weeks ago and some abnormalities coupled with joint pain that I've been having prompted the doctor to run some autoimmune tests. The rheumatoid factor test came up as negative, but the ANA was positive. She is running some additional tests to take a closer look for lupus. I don't really feel "sick" but my bloodwork along with some other symptoms is making me think lupus is a definite possibility. Although it would seem to be a mild case right now. Does anyone else have any experiences they could share?

[vjel]

diam, hope you get a definitive answer soon!

I was diagnosed with lupus a little over 5yrs ago after 2 years of trying to figure out the cause of a recurrent skin rash (my only symptom). I have a very mild case as well. I believe my lupus came about after a trip to the Bahamas (excessive and intense sun exposure). I lead a very normal life. I feel perfectly healthy (though I do get tired easily). I don't take any meds. The skin rashes are few and far between now b/c I really try to limit my sun exposure (for me that was a huge trigger, as was stress and raging hormones when I was pg w/ both kids) and if I have to be outside then I'm in the shade or I have sunblock on.

My mom was also diagnosed w/ lupus last summer. She had major joint problems that she attributed to arthritis. Her dr. told her to go see a rheumatologist THREE years prior and she didn't go til last year. :rolleyes: She lived w/ that pain unnecessarily. She was put on some med (might've been prednisone can't remember) and has been 100% better!

Anyway, LMK if you have specific questions. I'm a bit sleep deprived so I'm not sure if what I wrote made any sense or was helpful, lol. :o

[diam124]

Thank you so much for sharing. I also have some skin issues. During the last 3 beach vacations we've taken I've gotten a horrible rash on my arms and legs. I've never been able to figure out exactly what it is because it doesn't seem to fit with common rashes (tried different sunscreens etc. but nothing helped).

I also have a red rash on my face that was diagnosed as mild rosacea about a year and a half ago. The problem is that no rosacea meds have helped it and it doesn't have some classic rosacea characteristics. I'm now wondering if it's the lupus malar rash.

Were you concerned about pregnancy complications from lupus? DH and I have finally decided to start TTC in January so that's a big concern for me.

[vjel]

your welcome! :)

omg, I think we're lupus twins. ;) Did you go to a derm to figure out the rashes too? I went to several over a 2yr time period and each one would just call it a generic rash, no idea what caused it and give me topical steroids. It was very frustrating for me. I finally found a derm that had an inkling that it was lupus but didn't tell me for sure til after she did a punch biopsy on my arm.

I was also told somewhere along the way that I had rosacea, though I didn't think the redness on my face really fit the bill for rosacea and the topicals didn't work for me either. I know now that it's the "butterfly rash" associated w/ lupus.

I was very concerned w/ pg complications from lupus, moreso w/ my first pg than w/ the 2nd. All I could hear in my head was my rheumatologist saying there was a high risk of m/c during the first trimester. It totally freaked me out! I went to see a Perinatologist at Georgetown Hospital to see what course of action we needed to take to ensure a healthy pg. My ob (IIRC, you used to go to the same ob office that I go to) was totally fine with it and followed his recommendations.

Another concern is the possibility of the baby developing a heart block so I had to see a pediatric cardiologist while pg to check their hearts. Higher chance of preeclampsia towards the end. For my 1st pg, I was going to the Radiologist for u/s and NSTs (non stress tests) weekly (like 2-3times/week it was A LOT). The 2nd pg we still monitored closely but it was a bit more lax since I had a successful and uncomplicated 1st pg.

With my 1st pg, my skin was SO clear the entire time. It wasn't til about 3mos. post-partum that I rashed out, which my rheumatologist said could happen b/c of the crazy hormones. With my 2nd pg, I rashed out at the beginning of my pg (I found out I was pg and then we went on a beach vacation a week later so I think the combo of both caused a flare up). I'm 6mos. post partum now and have not had any skin issues so far, knock on wood. Regardless, I have 2 healthy and crazy kids now! :)

HTH! Feel free to PM me if you need to also!

[diam124]

Thanks, that makes me feel better. I never did see a derm. for my sun rash because it usually faded within a week or so of coming home from vacation. As long as it went away I figured it was just some weird thing. I'm also very fair, so I told DH that I just wasn't meant to be tan. It looked like sunburn from far away, but if you looked closely it was just red raised patches with smaller bumps.

I thought you were in the DC area as well. I'm actually closer to Baltimore now and I heard that Johns Hopkins has a highly rated lupus clinic. I don't know that I'd want to go there regularly though. I question whether my primary care dr. knows much about lupus though because she hasn't mentioned my abnormal blood results (other than the ANA) in relation to lupus, but everything I've read has that as a symptom. I've also had an abnormal EKG for the last 2 years and I read that happens with lupus as well because of inflammation of the heart.

[vjel]

Unless your PCP actively sees/treats/monitors lupus patients, I'd prob opt for a Rheumatologist. When I first was diagnosed, I was told that I could be monitored my my PCP, Derm or Rheumatologist. I went with the latter. PCPs know a little about everything but don't really specialize in anything. The derm specializes in the skin stuff but what if the lupus starts to affect your joints or other organs? Lucky for me I haven't had any issues beyond the skin rashes but I know my Rheumatologist is monitoring other things as well.

I also wanted to mention that when my dd was about 2mos. She developed a skin rash on her face too. I freaked and took her to see all MY drs, lol. It was nothing to be concerned about though. She was still carrying a lot of MY antibodies at that point so essentially she was getting whatever I had going on. Once she was rid of that, she was fine and has been fine since.

[diam124]

I go back and forth between thinking there is no way I have it and that it is a possibility. My Mom and my sister have both had positive ANA tests as well. My sister does have an autoimmune issue but my Mom doesn't as far as she knows (she does have arthritis but has been told it's osteo not rheumatoid). Everytime I read about lupus I read all these stories about how sick people are and I think how far I am from that. Then we went out to dinner this weekend and it was fairly cold out and while we were eating I noticed that a few of my left fingers had turned white (or as my husband said, they "looked like death"). I know that can also be a lupus symptom as well.

I'm not really sure what to do if these anti-DNA tests come back negative. (I have a feeling they will be negative). Since I don't feel so sick, I don't really want to be going to see all these doctors. But it does concern me that if I do get pregnant soon I might need extra monitoring.

[vjel]

Everytime I read about lupus I read all these stories about how sick people are and I think how far I am from that.

I TOTALLY get this! Obviously, there are varying degrees of lupus, mine being the least debilitating at this point. I mean, skin rashes? Not a big deal, just a nuisance. Sure it can progress down the road but right now, I feel good and am perfectly healthy otherwise...which is why I don't see my Rheumatologist unless I need to. I'm suppose to go every 6mos, I think, for regular monitoring but w/ 2 kids now, it ain't happening!

when do you get your test results back??? Try not to worry about it til you have some answers.

[diam124]

She's hoping they'll be back on Wednesday but it wouldn't surprise me if it took longer than that. Everybody I've talked to (dr., mom, sister(who is also a dr.)) seems skeptical that it could be lupus. But, the fact is that when you look at the 11 diagnostic criteria I match definitely 4, possibly 6 and they say 4 are needed for diagnosis. I don't want to seem like a hypochondriac though.

[diam124]

bump for another CC poster.

And to update a little - my anti-DNA tests came back negative, so as far as I know I do not have lupus (but I am certainly going to keep an eye out for symptoms). My joint pain has been much better the last month or so so that's good too!

[QueenDillyDally]

Thanks again for bumping this thread diam124! Glad your tests came back negative!

My story....

I have been having strange joint pain in my foot and hands for the past 8 months. So, my PCP ordered labs at my annual physical in the fall. The first lab work I had drawn in Dec came back positive with the rheumatoid factor and elevated ANA, so my PCP referred me to the rheumatologist. So, I had more labs drawn about 4 weeks ago. I didn't even ask what they were testing for, just that they were rechecking the RA labs. In the meantime, I just had a bone scan done and some xrays. Well, today I had my second appt with the specialist. My rheumatoid factor was negative this time (YAY!). But, my lupus lab work came back elevated, as well as my ANA is elevated. The lyme test was negative. So, that kind of freaked me out because I didn't even know they were testing for Lupus. They did more lab work today, I assume the anti-DNA test. I go back to the doctor in 4 weeks to find out the results. In the interim, he prescribed celebrex for my joint pain.

Just thought I would share. I will check out the Lupus foundation website to get more information too. I am not very familiar with it and how it is diagnosed.