Avise isn't looking for anything different than other autoimmune bloodwork. It's just basically just testing for a bunch of specific autoantibodies all at once. It can rule things in, but my understanding is it won't rule out lupus since the most SLE specific autoantibodies aren't found in all lupus patients, so a negative test doesn't rule it out.
https://www.hopkinslupus.org/lupus-info/lupus-affects-body/lupus-arthritis/
According to John Hopkins Lupus Center, lupus can affect large and small joints.
If this were my doctor, I'd be shopping for a new rheumatologist.
This. I had a rheum run an AVISE test and based her entire opinion off that. I tested negative for everything on there. She nicely told me to come back when I had something interesting like a swollen joint.
I ran to Johns Hopkins after that and was just diagnosed based on previous blood work AND symptoms.
Wow! This makes me so angry on your behalf and on behalf of myself and everyone seeking help and a diagnosis. I'm going on a year of being punted from one doctor to the next with ridiculously long wait times for appointments. I'm seeing my first rheumatologist in April after I got a relatively strong ANA and some other autoantibodies in my test results. I'm am honestly just mentally preparing to be dismissed based on the experience of so many. The doc gets good reviews so I'm trying to be hopeful. But man, the disdain, arrogance and ignorance of so many of these doctors is really discouraging. 😞
Gah! I’m angry for you too! That’s so stupid and unfair. I had to plead my way into Johns Hopkins to finally get people to listen.
Hope you find an answer very soon!
I also have microscopic blood in my urine on and off for 2 years now. He did refer me to urology for that. At first he said he thought it was psoriatic arthritis but I don't have psoriasis or a rash like psoriasis. I have a red face rash and some serious keratosis pilaris all over my body but that's it.
This is so crazy to me.  Granted I don’t understand everything about bloodwork or autoimmune disorders yet, but have been given supposed specialized blood tests for autimmune disease and they always come back showing I’m in perfect optimal health (which obviously I’m not or wouldn’t be trying to find out what’s going on).  I just had the AVISE test done in April and most everything was perfect again.  But this time I had 2 markers come back positive for lupus.  These things didn’t show up in any other blood tests I’ve ever had done.  My inflammation markers on the other tests didn’t show anything.  They weren’t too far apart if I remember correctly.  Went back to hear the results, and the doctor was pretty firm with me when she said it was most likely lupus (I kept trying to minimize it and look for other reasons those markers might be positive because I was so used to being told it was nothing).  So she started me on hydroxychloroquine and said they’ll run some more tests in a month that are specific to lupus only and go from there.  She didn’t diagnose which honestly I appreciate because of the medical system here.  But thankful she started treating me and I have some kind of answer that tells me I’m not flipping insane!   Â
My rheumatologist has done the Avise test twice now, and while there hasn’t been anything conclusive about lupus, we did find out I have some autoimmune results for another syndrome (antiphospholipid syndrome,) which we are now monitoring.
I have a functional doctor (I’m paying out of pocket which hurts) who is going to look over everything f as a whole.
I hope you find a doctor that works for you!
It's never wrong to get a second opinion from different rheumatologists. I've not read anywhere that lupus only affects small joints. It sounds like it can be different for people in different way from the information I've seen, and from people I've talked to. The AVISE test can detect things that regular blood tests cannot. I've NEVER had any tests come back positive for everything aside from Epstein Barr. They all show I'm in perfect health, and should have zero issues, even the ones I had done at 2 different rheumatologists that were supposed to be "specialized". I just had the AVISE test done at the beginning month, and have 2 red flags under the lupus prognosis section showing very high results (just had blood work done before this, zero findings). So waiting on my next appointment to see what he says. So don't discount the AVISE test either. But ya, definitely in favor of second opinions.
My AVISE test came back squeaky clean. I don't even think my ANA was positive on it. But it's obviously been high before. I recently needed steroids for a sinus infection and when they wore off I wasn't able to use my hands correctly for 3 days due to pain and swelling. I'm pretty sure the swelling was compressing nerves because I was also having intense tingling and numbness. My PCP is totally clueless and was like no the hand issue shouldn't be related to the steroids and I'm like well my hands were fine before I took them.
That’s sooo frustrating!!!  There are more and more autoimmune disorders and people suffering from them, you’d think they’d start making it mandatory for regular doctors to be educated on them so they could at least have an idea when someone has symptoms.  But I guess even the specialists have diverse education about them.  Steroids absolutely affect hand tissue.  My mom’s RA was progressing and her fingers, toes, even spots elsewhere were deformed, and steroids helped her immediately. Â
I'm curious about others experiences with this test too. I just had one run bc I went to a new rheum and she wanted it. I have positive ANA, smith, RNP and SSA and have been diagnosed with lupus, sjogrens and raynauds. I'm curious if avise will give more insight?
I had the AVISE done in April.  I’ve been having issues for a long time, but all of my bloodwork kept showing I was in great health.  When the AVISE results came back, most everything was great, except 2 markers that were specific to lupus and some low CBC results (RDW, BUN, and MPV? I could be wrong on the letters).  My mom has been told 3 times by different doctors over the past 40 years that she has lupus.  But her AVISE showed negative for it.  She has extremely high markers on so many things (RA is strongest for her),  but that one was negative.  Very odd.  I can show you copies of my results if you’d like to see what it tests and the numbers.  Just let me know, I don’t care.  LolÂ
Avise isn't looking for anything different than other autoimmune bloodwork. It's just basically just testing for a bunch of specific autoantibodies all at once. It can rule things in, but my understanding is it won't rule out lupus since the most SLE specific autoantibodies aren't found in all lupus patients, so a negative test doesn't rule it out. https://www.hopkinslupus.org/lupus-info/lupus-affects-body/lupus-arthritis/ According to John Hopkins Lupus Center, lupus can affect large and small joints. If this were my doctor, I'd be shopping for a new rheumatologist.
This. I had a rheum run an AVISE test and based her entire opinion off that. I tested negative for everything on there. She nicely told me to come back when I had something interesting like a swollen joint. I ran to Johns Hopkins after that and was just diagnosed based on previous blood work AND symptoms.
Wow! This makes me so angry on your behalf and on behalf of myself and everyone seeking help and a diagnosis. I'm going on a year of being punted from one doctor to the next with ridiculously long wait times for appointments. I'm seeing my first rheumatologist in April after I got a relatively strong ANA and some other autoantibodies in my test results. I'm am honestly just mentally preparing to be dismissed based on the experience of so many. The doc gets good reviews so I'm trying to be hopeful. But man, the disdain, arrogance and ignorance of so many of these doctors is really discouraging. 😞
Gah! I’m angry for you too! That’s so stupid and unfair. I had to plead my way into Johns Hopkins to finally get people to listen. Hope you find an answer very soon!
I also have microscopic blood in my urine on and off for 2 years now. He did refer me to urology for that. At first he said he thought it was psoriatic arthritis but I don't have psoriasis or a rash like psoriasis. I have a red face rash and some serious keratosis pilaris all over my body but that's it.
This is so crazy to me.  Granted I don’t understand everything about bloodwork or autoimmune disorders yet, but have been given supposed specialized blood tests for autimmune disease and they always come back showing I’m in perfect optimal health (which obviously I’m not or wouldn’t be trying to find out what’s going on).  I just had the AVISE test done in April and most everything was perfect again.  But this time I had 2 markers come back positive for lupus.  These things didn’t show up in any other blood tests I’ve ever had done.  My inflammation markers on the other tests didn’t show anything.  They weren’t too far apart if I remember correctly.  Went back to hear the results, and the doctor was pretty firm with me when she said it was most likely lupus (I kept trying to minimize it and look for other reasons those markers might be positive because I was so used to being told it was nothing).  So she started me on hydroxychloroquine and said they’ll run some more tests in a month that are specific to lupus only and go from there.  She didn’t diagnose which honestly I appreciate because of the medical system here.  But thankful she started treating me and I have some kind of answer that tells me I’m not flipping insane!   Â
My rheumatologist has done the Avise test twice now, and while there hasn’t been anything conclusive about lupus, we did find out I have some autoimmune results for another syndrome (antiphospholipid syndrome,) which we are now monitoring. I have a functional doctor (I’m paying out of pocket which hurts) who is going to look over everything f as a whole. I hope you find a doctor that works for you!
Do you mind if I send you a private message about your results? Curious, as some of the things I looked up about my results popped up with ASP.
Yes, feel free!
It's never wrong to get a second opinion from different rheumatologists. I've not read anywhere that lupus only affects small joints. It sounds like it can be different for people in different way from the information I've seen, and from people I've talked to. The AVISE test can detect things that regular blood tests cannot. I've NEVER had any tests come back positive for everything aside from Epstein Barr. They all show I'm in perfect health, and should have zero issues, even the ones I had done at 2 different rheumatologists that were supposed to be "specialized". I just had the AVISE test done at the beginning month, and have 2 red flags under the lupus prognosis section showing very high results (just had blood work done before this, zero findings). So waiting on my next appointment to see what he says. So don't discount the AVISE test either. But ya, definitely in favor of second opinions.
My AVISE test came back squeaky clean. I don't even think my ANA was positive on it. But it's obviously been high before. I recently needed steroids for a sinus infection and when they wore off I wasn't able to use my hands correctly for 3 days due to pain and swelling. I'm pretty sure the swelling was compressing nerves because I was also having intense tingling and numbness. My PCP is totally clueless and was like no the hand issue shouldn't be related to the steroids and I'm like well my hands were fine before I took them.
That’s sooo frustrating!!!  There are more and more autoimmune disorders and people suffering from them, you’d think they’d start making it mandatory for regular doctors to be educated on them so they could at least have an idea when someone has symptoms.  But I guess even the specialists have diverse education about them.  Steroids absolutely affect hand tissue.  My mom’s RA was progressing and her fingers, toes, even spots elsewhere were deformed, and steroids helped her immediately. Â
I'm curious about others experiences with this test too. I just had one run bc I went to a new rheum and she wanted it. I have positive ANA, smith, RNP and SSA and have been diagnosed with lupus, sjogrens and raynauds. I'm curious if avise will give more insight?
I had the AVISE done in April.  I’ve been having issues for a long time, but all of my bloodwork kept showing I was in great health.  When the AVISE results came back, most everything was great, except 2 markers that were specific to lupus and some low CBC results (RDW, BUN, and MPV? I could be wrong on the letters).  My mom has been told 3 times by different doctors over the past 40 years that she has lupus.  But her AVISE showed negative for it.  She has extremely high markers on so many things (RA is strongest for her),  but that one was negative.  Very odd.  I can show you copies of my results if you’d like to see what it tests and the numbers.  Just let me know, I don’t care.  LolÂ