lupus, but confused
I am a new member.
My history is a strange one.
To cut the very long story short. After a healthy life (never ever had any lupus symptoms) I got pregnant, only to find out that at 25 weeks 5 days I had severe pre-eclampsia and almost collapsed kidneys and liver. I went into HELLP.
At 26 weeks I had an emergency C-section.
My son was born at 1 lb 10 oz, but he is very healthy (now he is two).
My placenta was infarcted more than 50% because massive coagulation problems.
Two weeks after the delivery I survived a pulmonary embolism.
Well, not a day has passed to think why this has happened.
At the time of the delivery I had a positive ANA (homogenous and speckled pattern around 1: 160 and 1: 320) that nobody (but me) was concerned about.
After two years of researching I decided to consult other doctors in an idea I may have another baby.
The high risk Ob/Gyns consider that I have a coagulation issue, even though I haven't tested positive for anyone, not even APS. They want me on Lovenox the minute I try to conceive.
After having more tests, the result came back with a positive ANA (again) and 625 mg of proteinuria and a perfect CBC.
I realized I have a rash on my face from the sun, and my first guess was...LUPUS.
Well, it is confirmed, I have lupus, I have positive ANA, Sm/RNP and ds DNA.
But I have no symptoms whatsoever, and never had any.
The rheumatolog says my lupus is inactive.
Is this possible to have lupus but never be active? Was it active in my pregnancy, with no symptoms?
How could it get inactive when I was tired with a micro-preemie baby, never had a good sleep in 2 years, not to count the emotional struggle?
My high risk Ob/GYNs never considered I have LUPUS despite my complicated pregnancy, pulmonary embolism, and positive ANA.
One of the doctors told me that if I didn't diagnose myself first, I would have had at least 10 -20 years with no problems.
Is this possible?
I have a question, from your experience, can you have inactive lupus and get into lupus nephritic at some time?
At this moment I don't have a lupus nephritic, but can it degenerate into one?
My kidneys are spilling protein because of the damage from the pre-eclampsia (the nephrolog and ob/gyn think that).
I am lost trying to understand what has happened.
And I do want another baby. The Ob/Gyn is cautiosly optimistic, but my rheumatolog said NO, it may kill me.
Wishing you all the best
Hi Izabel -
It must be difficult getting all this news at once and wanting to have another baby at the same time!
I'm a little confused as to why your doctors are calling your Lupus inactive when your blood work clearly has elevated levels. I'm wondering if they gave you an explanation as to why you have proteinuria due to pre-eclampsia 2 years ago. Have you seen a Nephrologist yet? And have they done a kidney biopsy? I've known lots of people that had pre-eclampsia with no lingering kidney effects and lots of people with Lupus that have lots of kidney effects. How is your blood pressure?
While saying all of this, of course, you are not feeling symptomatic (except it sounds like you've had fatigue). This was how I was when I was diagnosed with Lupus as well. I had a lot of fatigue, was anemic, and soon found out I had Lupus Nephritis. It is possible for Lupus problems to arise at any time, and there is evidence that pregnancy can exacerbate problems. Having Lupus (especially the lab "numbers") under control before pregnancy leads to the greatest chance of an easier pregnancy with Lupus. You'll find some other recent posts on this topic as well, with more details.
If I were you, I would want to figure out the proteinuria specifically. The thing is that during pregnancy, proteinuria usually elevates, even in a healthy person, but if you already have a higher level, it can add more risks to your kidneys. My nephrologist said they want proteinuria under control pre-pregnancy. Your coagulation problems make sense with Lupus, as well.
It's great that you figured out what was going on! It sounds like no one else would have!
I wish you the very best of luck with your decision making and am really glad you have joined us here!
thank you for the reply.
I think the doc said my lupus is inactive because of my complements.
My blood pressure is normal 110/70.
I am seeing a nephrologist that agreed that I do not have lupus nephritic.
She told me that I have to have more protein in urine ( 24 hour urine showed a decresed from 625 mg to 236 mg with no drugs). I have repeted the 24 hr urine again last week and waiting for my results.
The nephrolog said in order to have lupus nephritic you have to have something else besides proteine like blood, casts....or even the proteinuria has to be more 236 mg.
I took her words for granted but never stopped researching.
She said even though I would have a biopsy, I will be in first or second category that doesn't require treatment.
I do have my numbers high tough, that's why I posted.
I need more explanations from my docs, because I am very confused.
The reason everyone thinks the proteinuria is due to my previous pre-eclampsia is because at that time I had almost 8 g proteinuria.
What worries me the most is that at 8 g proteinuria I wasn't swollen or had any other symptoms of pre-eclampsia or lupus.
Missy, I have one more question for you.
Do you have lupus nephritic with no other symptoms, like the joint pain or fatique?
What scares me the most is not that I have lupus (mostly because I don't feel any different) but that I have the silent nephritic part and nobody pays attention to it.
At this time I don't know about the second baby. I am not afraid I may die, but I am afraid about baby spending months in the NICU and not having the same outcome as my baby boy.
Missy do you have kids?
Thanks for you reply.
I forgot to tell you that I started the first pregnancy with no proteinuria whatsoever. I thought I was in perfect health. So did my docs.
One month before my delivery I had 1+ on the stick, but I was ignored because my blood pressure was very low (90/60).
A month later I was 3+, had borderline blood pressure, terrible blood work and had to deliver by emergency C-section in no time.
I keep asking anyone what will be the outcome if I have the proteinuria from the begining of the pregnancy?
Nobody can answer that, ob/gyn talks only about the clotting issue.
I have the drug that lower the proteinuria, but nephrolog is worried about lowering my blood pressure too much.
I haven't started the drugs yet, as my proteineuria is getting down by itself.
Personally, I have had mostly fatigue and kidney problems with Lupus. I have had some "mild" joint pain here and there, but it's been a while. Of course, I've had a lot of side effects from the medications I've used to control the Lupus. My only symptoms of Lupus Nephritis when I was diagnosed were anemia, fatigue, and peeing a lot more often. In fact, I went to the doctor to ask if I could have a bladder infection without it hurting when I urinated. This is what they originally treated me for, until my hematocrit came back at 25. Then, they did additional blood work, and it was obvious that I had Lupus Nephritis, because my Sed rate was elevated, kidney function was low, creatinine bad, lots of proteinuria. My complement levels have never been very far off normal. I don't have children, and my Lupus is as good as it's been ever right now. I'm trying to make the decision about how to grow my family. Most likely, we'll be adopting, because I worry for my health with a pregnancy. My kidneys have permanent damage, and my proteinuria seems to be controlled with Lisinopril, which you cannot take during pregnancy.
Anyway, it sounds like they are keeping track of your blood work. I think for the pregnancy questions, I would see a perinatologist, a high risk OB/GYN. All people with Lupus are advised to see one, if they become pregnant. I would be afraid of the silent Lupus Nephritis, too. I understand your fears. You are doing a great job of trying to get all the information you can to make the best decision for yourself.
When I was diagnosed with Lupus Nephritis, my nephrologist did suggest I get a second opinion. He said that anytime you get a major diagnosis, it's agood idea to get a second opinion to be sure, especially about treatment options. So, how would you feel about that?
Take Care, Izabel. I hope things become clearer for you. It must be frustrating to have this be so vague and confusing.
how many protein you had in your urine at the time you were diagnosed?
did you have blood as well?
I have seen perinatologist, several of them, during and after my complicated pregnancy. One of them ordered the 24 hr urine in January when I decided I may try again.
the strange thing about me is that despite the 625 mg of protein in my urine, when I gave a urine sample at the spot, the stick showed nothing, not even a trace.
this was very confusing because if nobody would have tought about a 24 hr urine I would have been pregnant by now and end up worst than the first time.
that's how I come to the conclusion that you can't trust anyone.
My perinatalogist didn't advise me against pregnancy.
I am wondering if you have seen a perinatologist and what was his opinion in your situation. Does anyone say to you don't get pregnant?
You confirmed my fear, lupus nephritic can be silent. I have to push for more blood work, nobody did a sedimentation rate on me, I am wondering why.
I have permanant damage of my kidneys from the pre-eclampsia (the docs think), the perinat said that I may get further damage but you can still live a normal life. Now I am wondering if this is the truth.
I am trying to get a second opinion from a rheumatolog, because I already asked for second and third of perinates. They all think the same, lovenox for coagulation issue and keep our fingers crossed.
The problem is I live in NM a very underdeveloped state, and I have to find a good rheumatolog in CO or AZ or maybe some other state.
Missy, where do you live?
Thanks so much for sharing your experience with me. I don't feel alone anymore.
I am thinking about adoption myself, but it doesn't seem easier.
Are you taking any medication now?
I am not taking anything except for a vitamine supplement.
I see my rheumi this Thursday to discuss all my questions.
I wish all you all the best
Welcome! I share the same experience of being diagnosed as you except I was only 20 weeks and had to deliver my son but he was too young to survive. I was diagnosed with lupus nephritis at that time and was even put on dialysis. I also had many other symptoms that had me in the hospital for 5 weeks but I am doing much better now, but still battling with lupus nephritis and many docs and advised me against ever becoming pregnant again or at least not anytime in the near future.
I just had a kidney biopsy last week so that we can see what stage the disease is in. I am usually at 2-3+ with occult blood. My blood pressure is generally good but I take a small dose of blood pressure med because I am on prednisone which can sometime elevate your pressure outside of the nephritis.
I would suggest you do just what you are doing which is educate yourself, ask your docs as many questions that pop into your head and don't give up just yet on another child. GOD is always in control.
Pretti in Pink,
I can only imagine your situation. I am so sad and sorry for your loss.
I think it is even harder because you were advised not to try again soon.
When my son was born I didn't think he will live.
Everything took me by surprise, I never read about preemies.
All I could think was that I will have a healthy baby some time.
That was my only hope.
When I got the embolism the doctor wanted to take my uterus out because it was popping up clots. He kept telling me that I have no choice or I would die. I said I would rather die than not have another chance.
The ob/gyn was agaist surgery, thank God!
Pretti, I hope you will get a good result from your biopsy and waiting a bit longer it will give you a chance to try again.
I know how difficult this may be to you, I am so glad you replied.
Have you ever had any kidney problems before getting pregnant?
How do you feel now? Do you have the joint pain, the fatique, etc?
I think you are right, it's only God's wish.