my rhuemie dr told on the 1st visit he was 90% sure I have lupus based on symptoms and a positive ana of 1:160 speckled.
when he did a 2nd round of blood work the ana came back as just saying neg- and the anti-dna, anti-sm and anti-ssb and ssa all came back with some small level to them. I still have the slight blush look across my nose and cheeks
"stiff hands and feet" back hurts alot ect. I go back to the dr 7/1/09 and also have reynaud's for sure.
I also had a 24 hr urine test that showed small 30 protein, and high rbc in it. Does it sound like I for sure have lupus and also what are normal levels for anti-bodies
I honestly don't know what normal levels are for anti-bodies. But I do know that you ANA can change. People with lupus sometimes never test positive on the ANA and also some people that don't have lupus come up with a positive test results. That is why it is know as the disease of a thousand faces. Now that he is 90% convinced that you have lupus has he started you on any meds and if so and you don't mind telling what did he give you. Also if he didn't what was his reason for not doing so. I am mostly asking because on of the meds they put you one called plaquenil. But it can take at least 3 months to start to make a difference and with some people like me it took longer then 3 months to even feel a slight change. It's funny I think the butterfly rash is the only symptom i didn't get, I just got all the weird ones that nobody usually gets. Never made things easy as a child why should my body make things easier as a grown up. Maybe this is payback for being such a brat growing up. lol. No clue if I helped you at all but keep posting and we all try and help as much as we can. Good luck and hope to hear from you soon
Sorry I just saw this one, it was originally posted 5/27 and as of yesterday when I had reposted it no one had answered--so thank you for answering and he only has me on Mobic right now for pain in my hands, back, knees and feet. I try and not take anything but there are days when I really need it so I take it. Mobic does not need to be taken daily to be effective. I go back for a recheck on 7/1 and I am not in flare up right now, although if I am out in sun for any length of time, I do get a fever that same day and feel like I have the flu the next. I only have a slight rash across my face and it gets darker if I am out in the sun. When Iam in a flareup it is bad!! memory will be shot, extrememly tired, lungs hurt to breath, hair loss-clumps, but thank God right now I am feeling pretty good!!--thanks again for commenting
The symptoms sound very familiar. There is one medication that almost everybody that has lupus and also that i know are on one specific medication, it is called plaquinal. It is considered an anti-malarial medication. They use it because it has shown that it slows the progression of the disease down. It isn't any kind of pain medication but after being on it for 3-6 months it is supposed to help reduce pain because it is supposed to help with all different aspects of lupus. It is a kind of medication that you take every day not just when you hurt. It isn't a narcotic medication so it isn't addictive. Once you start taking it, it can take 3-6 months to start feeling better. It is also something that as far as I know and as long as you don't have severe side effects you stay on it the rest of your life. There is also what they call NSAIDS, they are anti-inflammatories they are a medication you take everyday and they are non-habit forming. They really help with inflammation (you know when your lovely or should i say your once lovely joints) joints in feet, hands etc.... it is similiar to advil but prescription strength. and those do help with swelling and pain. I was on them for a couple of years but it had to stop because they caused me to develop a bad stomach ulcer which if bleeds isn't good. But when I was taking them i felt alot better then i did when i had to stop. I have had alot of problems now that i didn't have before. These are just a couple of things that you might want to check with your Dr. and discuss about whether or not he plans on trying these and if he isn't i would be curious as to why not. they are both very very common for people with sle to take. What is Mobic, i have never heard of it before. I am curious what it is and what it is for. It so important to ask questions to your dr and it sure doesn't hurt to check in with other people with lupus, we might not have a medical degree and we never claim to we just know what we have taken how it has worked and side affects . So make sure if you have questions for your DR come prepared. In between appointments keep a journal about how you are feeling, how your meds are working for you, new symptoms, really just anything that pops in your head. This way you aren't driving home after with the why didn'ts . the why didn'ts is when you go over and over in your head wondering how you forgot to ask that question. That is why I stress how important be organized is. Specialist aren't known for wanting to spend a long time with a patients so you have to be quick and prepared. But find out about these other meds and see what he says and also find out what his gameplan is for you. This is just some food for thought. Let me know what happens I am curious to see what he plans to do. Take care
Luppygirl is right. Someone w/ lupus can have varying levels of ANA. Mine yoyoed untill I read on medhelp where you need to spend some time in the sun before your labs. When I did that, my ANA jumped to 2,560. The drs. had no choice but to say, OK this is out of the ordinary. I was able to then get plaquinel prescribed and the help I so desperately needed. If you don't have lupus, the sun exposure won't affect you. But from your post, it sounds like it really does. So many of your symptoms sound familiar.
Don't know if you are aware of this, but there are 11 criteria for a lupus dx. One must have at least 4 in order for a dr. to give a dx. Some rhematologist must want there to be organ involvement before they hand out such a dx. My rhemy has told me I have mild lupus and we monitor the plaquinel. But in my chart, she has not officially dx me with lupus. Maybe she is doing this for my benefit and future insurance. Once the dx of lupus is handed down, you can forget ever getting life insurance. I'm not sure if we had to switch medical insurance how that would affect me.
Try to get plenty of sleep and good water. Ask them to check you vt D level. Most lupus patients have low vit D. It must be because of the affect lupus has on the intestines and nutrient absorption. But most of all, try NOT to stress. STRESS can cause a flare. Stress can cause a lot of things. Every person who has lupus can pinpoint a time in their life right before the onset of symptoms where they went through a very stressful time.
We are here for you and want to help you in anyway we can.
Just wanted to comment on a couple of things. We have low vitamin D my endochrinologist says because we cannot be out in the sun.
And you are right some of us lupus patients have negative Ana's. Mine has always registered negative and one doctor finally told me the reason why. He said because of my Hashimoto's (hyop-thyroid) disease I have very very high thyroid antibodies, and because they are so high they mess with the ana tests.
I have all the symptoms, and the butterfly rash, and I have five other autoimmune disorders. It took a long time to dx me, because some said no way can you have lupus if your ana is negative. Thank goodness I found a better doctor who knew better!!
I have never taken the plaquinal, I have been on steroids as needed orally and by IV and used to take advil and prescription NSAIDS but last year out of the blue went into anaphylactic shock after taking two advil and now cannot take any NSAIDS or aspirin as while in the hospital they gave me that and I went into allergic shock.
I have found that by making lifstyle changes, giving into the fatigue and making myself rest and put my feet up, avoiding the sun, staying away form people who are sick, and avoiding stress as much as I can truly make a big difference.
The past 2 years I have undergone 4 spinal surgeries and each one brought on a lupus flare as lupus doesn't seem to like it when there is any invasion to the body. The doctors are now recommending a spinal stimulator implant to help deal with my chronic back pain but I'm concerned about the implant causing the lupus to flare. So I'm trying to research it and see if anyone or any doctor has any information about it.
I am so sorry that you all are dealing with lupus and pray and wish for you many pain free days to come.
Thank you everyone for your replies--I really appreciate it. I do have very low Vit D, almost to the point of not having any--my levels were 10. I have been on 50,000 units every couple of days. I have not had a flare up since the end of march, although when I go out into the sun later on that day I feel like I have the flu...so I guess it is messing with that part of it. When I say a flare I mean cannot think straight, pain everywhere, hair falling out worse than normal, slight fevers on and off. Right now I just have stiff hands and feet, and painful back and knees. I am only on Mobic (NSAIDS-prescription) for when the pain is really bad. I always have some measurable amounts of blood and protein in my urine, but Rhemy is not concerned about it.
Thanks again everyone--
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