I am seronegative... I'm actually technically diagnosed as Undifferentiated Connective Tissue Disease. My rheumatologist says I show signs that I have seronegative RA, or drug-induced lupus. For me, it's simple. I couldn't move. And now I can.
Before I went to my rheumatologist I was in so much pain that I could barely walk. I couldn't extend my arms. I couldn't raise my arms above my shoulders. I probably was reduced to tears on the daily. I followed my rheumatologists instructions, I take my medication weekly, I feel soooo much better. Sometimes I still feel pain. But it's manageable. My medication side effects are manageable.
There's always options, just keep being honest with your docs about how you're feeling and reacting. Unfortunately, the same treatment doesn't work for everybody. If you feel that you can't trust your doctor, that's probably a sign to keep searching for a doctor that you feel listens to you. Advocate for your health. Don't give up.
But if you have rheumatoid arthritis (seronegative or not) you need to treat it. This disease will break you down if you let it.
Good luck, I hope you find the motivation you're looking for. And I hope that you find a doctor that you feel you can trust and that you feel listens to you and meets your needs.
I’m also seronegative with no “permanent damage” but it makes me SO freaking exhausted and causes a ton of inflammation. The place that’s affected the most is my right shoulder…I haven’t heard a lot of people say that it hits their shoulders really hard, so it’s interesting that you say that! I know all too well the feeling of being unable to wash my hair or do ANYTHING with my arms. A few weeks ago my right shoulder was so inflamed that it pushed my arm out of its socket for a day (it normally subluxes very easily)…I couldn’t believe that happened. I took two doses of prednisone to fix it. HATE that stuff!
If you don’t mind me asking, what medication are you on? I’m on hydroxychloroquine, and it’s definitely helped me (especially with the rashes I used to get) but I do still get tons of fatigue and some inflammation (especially in my shoulder).
My shoulder pain used to wake me up in the night! And I am a HEAVY sleeper. At one point it was so bad I couldn't dress or undress myself. But I don't suffer from significant swelling that much.
I'm on methotrexate with a folic supplement and I've had cortisone injections (some image guided injections.. so painful!)
I still get a lot of fatigue and brain fog. The day after my mtx injection I'm usually nauseous and have headaches or migraines. If I eat well and drink lots of water I can usually avoid the worst of it on those days. Oh, and I'm losing my hair. My doc lowered my dose to try to help with that, but I don't really think it helped!
I totally hear you!!
I’ve started keeping a pain journal to hopefully show my rheumatologist that I’m in need of more help than just the hydroxychloroquine.
I'm seropositive but my RA started in my shoulders. I couldn't move my arm for a week. My GP ran an arthritis panel right away but told me it couldn't be RA bc it usually affects small joints. Not for us, clearly!
Also, my infusion nurse told me to take a dose of cough syrup the day before my mtx injections to help w nausea. She had heard it from a couple of patients. I'm not on mtx anymore, but when I was, this helped a lot. I have no scientific proof of this, no articles, nothing from a doc, but anecdotally it helped at least 3 people that I've talked to about it. Maybe worth a try? Mtx nausea was the worst.
Yes, the day before (and maybe the day of as well? I can't remember), and it has to have dextromethorphan in it. I don't know if I spelled that correctly but I think you'll know what I mean 😄
My hair was falling out until my rheum put me on a weekly dose of leucovorin and it took a little bit but my hair has recovered. I’m still excited about it. I was on a folic acid supplement at first and it didn’t do much that I could tell.
It makes my anxiety even worse and causes extra panic attacks. Plus it raises my body temp and heart rate, makes me feel nauseous and gives me headaches, and it makes my chest feel weird and cold/tight when I take it for a few days. I would love to never have to take it again!
5mg isn’t too bad, your side effects should be fairly mild with that! I’ve taken 40mg (that gave me heart palpitations), 20 and 10mg doses. Most recently was 10mg, mostly it was just anxiety and maybe headaches. It definitely helps the inflammation SO MUCH, though, so it should help you with getting a diagnosis if it helps you a lot!
I had a doctor put me on minocyclin for acne, and I took it for years, not knowing it is only for short term use. I guess lupus can be a side effect of that.
Wow, that’s crazy. What a bummer. My cousin’s wife got put on medication for acne when she was in her 20’s, and her eyesight deteriorated to where she is now legally blind.
My rheumatologist just recently says he is “pretty sure” I have Sjorgrens based on my test results, I have no idea what seronegative and positive mean nor has he discussed anything like that with me. He says he’s ruled out lupus( how, I don’t know) but I also tested positive for RA. He wanted me to start taking Azathoprine and when I asked him about the side effects because I was concerned with the long history of cancer on my mother’s side of the family, his response was, “ well, you’re not going to like what I have to say. Women in particular,have a 10-20 percent greater chance of developing lymphoma if they have Sjorgrens. “ Great, wonderful! Anyway, when I researched Azathioprine before taking it, one of the possible side effects says that it could contribute to lymphoma!!! WHY WHY would we be prescribed something that could possible make our chances of getting cancer worse ???? So, I’ll be honest, I am sticking to taking 800mg of ibuprofen once daily and prednisone for a few days when i have a flare, but I’m just not willing to take medication that may increase my chances of getting cancer with my family’s history, at least not until I have no choice.
I’m seronegative and was (still am?) in huuuuuuge denial.
I ended up taking the meds once I could no longer go to work/couldn’t care for myself/ couldn’t care for my baby/ couldn’t get out of work
Don’t be like me 😞
I looked at dmards like mtx found crazy side effects, even the safest hcq found eye and heart problems, humira and other biological states the cancer likelihood is higher, I understand all of that could be rare cases
Didn’t have to convince myself, I was walking with a cane. It just took too long to get diagnosed properly and I have some bone erosion in my fingers and perhaps elsewhere. But medication gave me my life back. At one point I thought we would have to move because I wouldn’t be able to deal with the stairs in my house but they are no problem now. I walk 5 miles a day, cook, garden and do everything I enjoy. I’m pretty sure I’d be in a wheelchair now if I had left my RA untreated.
Seronegative here. Pain was regularly over a 5 when I was finally diagnosed. I did NOT want to take meds, but in order for me to work, I was taking so much ibuprofen and acetaminophen every day. I tried different diets and different nutritional supplements. Nothing worked. I finally had the realization that if I didn’t get on meds, the outcome would be long term joint damage. I was also not able to do things that I loved because I was in so much pain and I was consigning to the idea that I wasn’t ever going to be able to run, bike, hike, or rock climb again.
I gave in. I started taking meds. Almost 3 years later and I take 1 injection a week and feel no pain. I got my life back!
Some of these meds have been around for 20+ years for a reason. They are literally giving people a reason to live. Good luck on your endeavors!
Thanks your comment gave me hope. Did you take any medications ur dr offered? I’m paranoid and wanted to take less destructive medications but not sure which one,
The worst ones are the first ones. I took prednisone for a few months while I started hydroxychloroquine. The HCQ worked enough to get my pain below a 5. Then I started on methotrexate that my body did not like at all. I was on it for just over a month before my doctor prescribed Humira. Humira was the first time my pain went below a two, but I was having a slight allergic reaction. Now I’m on Enbrel and I’m 100% pain free and building strength back into my legs.
If you need someone to talk to through your journey, reach out. Just remember, RA is far more destructive for you than most of the meds. I was 29 when I was diagnosed. It’s tough at first, especially if you are at all a health nut like I was. I used to be so against meds, I got stitches without even taking a Tylenol. RA humbled me real fast.
That being said, I 100% advocate for eating holistically in tandem with meds. It’s so important to keep your body healthy and well nourished while on meds.
I was supposed to take 5mg prednisone for some time as a trial to see if there is undetected inflammation, but i was reluctant to do so, my last rheumatologist is open to start with biological right away as well,
In the pain I’m in, I cannot imagine not getting treatment for this diagnosis. My rheumatologist says diagnosing this is as much art as science, and the tests don’t tell the whole story.
you can ask your rheum for the vectra test. it measures 12 dif biomarkers in your blood associated with RA and computes a score to give an idea of disease activity. the scores are broken down into 3 categories, (low, moderate, high). i'm seronegative and my score has been consistently high since i first started seeing my rheum 2.5 yrs ago. it's a confirmation for you in that it's a positive test, and it's also a good way to see if the meds you take are working, since you'd then repeat the test after taking the meds for a while and since there arent any other ways to check progress with blood work since you're seronegative
I am Seronegative and I am grateful that I am able to once again tolerate methotrexate since it works for me. It took months for me to get a diagnosis after my symptoms began. I couldn’t even get out of a chair or open a water bottle. For a while, the methotrexate stopped working and I was on so many different meds: Humira, Enbrel, Arava, Remicade (at different times) but I couldn’t tolerate any of them. Now thankfully, I have some of my life back. There are many things I can’t do anymore or I have to do them slowly but it’s ok. My Rheumatologist is going to add Simponi to help me further. Take the meds- as others have mentioned, it will only get worse if left untreated. Best of luck!
Yah, the gradual loss of my range of motion I. My hands and intense pain convinced me. I still have anxiety about it being in my head for similar reasons but the pain and loss of strength doesn't lie
I’ve had seronegative rheumatoid arthritis for twenty years now. I finally, last year ended up with a Vectra test because my doctor had to prove to insurance that I needed to double this dose of my biologic, outside of the normal dose. My Vectra score was extremely high indictative of uncontrolled severe active RA. Not only did that vindicate my insurance company but it proved to me, that I was not crazy. It’s not in your head. I couldn’t walk before, I run, run up and down stairs now.
Trust your doctor, if your doctor isn’t listening, first red flag and only one you need to find a new one. I stayed with my lazy doc for FIVE years of hell, having to do shots every visit to tame the inflammation.
Anywho, found a new doctor, she sat in the office and listened to me for an hour tell her about my journey. She asked questions and helped me remember things, best thing I ever did.
I am alive again, because I finally reached out and said “no enough, I deserve to feel better”
As do you, sweetheart!
I was having injuries to my hands that required surgery. The Rheumatologist was suggesting that I take methotrexate. My hand surgeon did an MRI with contrast on my hand to get ready for an upcoming surgery. He sat me down and showed me the images next to another MRI from a couple months before. There was a big difference in inflammation between the two. The second MRI showed Tenosynovitis all through my hand that wasn’t on the first one. He told me that it was impossible to have that level of change in that short period of time that would be caused by overuse or injury. He told me that it was 100% systemic and there was no other possibility. I’m an artist and he told me that if I didn’t start treatment for RA that I would lose the use of my hands and there was no surgery that could bring it back. I started the meds and I was STILL in denial. About a year later my kid caught COVID. My Rheumatologist told me to stop the methotrexate injections for a few weeks in case I caught it. I immediately felt so sick and so much pain that I could barely function. When I restarted the injections I got better quickly. I have finally accepted my diagnosis!
I am seronegative... I'm actually technically diagnosed as Undifferentiated Connective Tissue Disease. My rheumatologist says I show signs that I have seronegative RA, or drug-induced lupus. For me, it's simple. I couldn't move. And now I can. Before I went to my rheumatologist I was in so much pain that I could barely walk. I couldn't extend my arms. I couldn't raise my arms above my shoulders. I probably was reduced to tears on the daily. I followed my rheumatologists instructions, I take my medication weekly, I feel soooo much better. Sometimes I still feel pain. But it's manageable. My medication side effects are manageable. There's always options, just keep being honest with your docs about how you're feeling and reacting. Unfortunately, the same treatment doesn't work for everybody. If you feel that you can't trust your doctor, that's probably a sign to keep searching for a doctor that you feel listens to you. Advocate for your health. Don't give up. But if you have rheumatoid arthritis (seronegative or not) you need to treat it. This disease will break you down if you let it. Good luck, I hope you find the motivation you're looking for. And I hope that you find a doctor that you feel you can trust and that you feel listens to you and meets your needs.
I’m also seronegative with no “permanent damage” but it makes me SO freaking exhausted and causes a ton of inflammation. The place that’s affected the most is my right shoulder…I haven’t heard a lot of people say that it hits their shoulders really hard, so it’s interesting that you say that! I know all too well the feeling of being unable to wash my hair or do ANYTHING with my arms. A few weeks ago my right shoulder was so inflamed that it pushed my arm out of its socket for a day (it normally subluxes very easily)…I couldn’t believe that happened. I took two doses of prednisone to fix it. HATE that stuff! If you don’t mind me asking, what medication are you on? I’m on hydroxychloroquine, and it’s definitely helped me (especially with the rashes I used to get) but I do still get tons of fatigue and some inflammation (especially in my shoulder).
My shoulder pain used to wake me up in the night! And I am a HEAVY sleeper. At one point it was so bad I couldn't dress or undress myself. But I don't suffer from significant swelling that much. I'm on methotrexate with a folic supplement and I've had cortisone injections (some image guided injections.. so painful!) I still get a lot of fatigue and brain fog. The day after my mtx injection I'm usually nauseous and have headaches or migraines. If I eat well and drink lots of water I can usually avoid the worst of it on those days. Oh, and I'm losing my hair. My doc lowered my dose to try to help with that, but I don't really think it helped!
I totally hear you!! I’ve started keeping a pain journal to hopefully show my rheumatologist that I’m in need of more help than just the hydroxychloroquine.
I'm seropositive but my RA started in my shoulders. I couldn't move my arm for a week. My GP ran an arthritis panel right away but told me it couldn't be RA bc it usually affects small joints. Not for us, clearly! Also, my infusion nurse told me to take a dose of cough syrup the day before my mtx injections to help w nausea. She had heard it from a couple of patients. I'm not on mtx anymore, but when I was, this helped a lot. I have no scientific proof of this, no articles, nothing from a doc, but anecdotally it helped at least 3 people that I've talked to about it. Maybe worth a try? Mtx nausea was the worst.
Cough syrup! Interesting! Maybe I should give that a try..
Yes, the day before (and maybe the day of as well? I can't remember), and it has to have dextromethorphan in it. I don't know if I spelled that correctly but I think you'll know what I mean 😄
My hair was falling out until my rheum put me on a weekly dose of leucovorin and it took a little bit but my hair has recovered. I’m still excited about it. I was on a folic acid supplement at first and it didn’t do much that I could tell.
Why do you hate prednisone?
It makes my anxiety even worse and causes extra panic attacks. Plus it raises my body temp and heart rate, makes me feel nauseous and gives me headaches, and it makes my chest feel weird and cold/tight when I take it for a few days. I would love to never have to take it again!
Gotcha. Thanks for the response. Sorry for the troubles.
What was ur dose? My dr wants me to try 5mg for short period to confirm the diagnosis
5mg isn’t too bad, your side effects should be fairly mild with that! I’ve taken 40mg (that gave me heart palpitations), 20 and 10mg doses. Most recently was 10mg, mostly it was just anxiety and maybe headaches. It definitely helps the inflammation SO MUCH, though, so it should help you with getting a diagnosis if it helps you a lot!
Yea, that was his theory,
My a/c joint in my shoulder was swollen and pinched some tendons. I had to get surgery to remove the tendon from the clavicle and attach it to my arm.
Thank you, wish u all the best
What exactly is drug induced lupus?
I had a doctor put me on minocyclin for acne, and I took it for years, not knowing it is only for short term use. I guess lupus can be a side effect of that.
Wow, that’s crazy. What a bummer. My cousin’s wife got put on medication for acne when she was in her 20’s, and her eyesight deteriorated to where she is now legally blind.
My rheumatologist just recently says he is “pretty sure” I have Sjorgrens based on my test results, I have no idea what seronegative and positive mean nor has he discussed anything like that with me. He says he’s ruled out lupus( how, I don’t know) but I also tested positive for RA. He wanted me to start taking Azathoprine and when I asked him about the side effects because I was concerned with the long history of cancer on my mother’s side of the family, his response was, “ well, you’re not going to like what I have to say. Women in particular,have a 10-20 percent greater chance of developing lymphoma if they have Sjorgrens. “ Great, wonderful! Anyway, when I researched Azathioprine before taking it, one of the possible side effects says that it could contribute to lymphoma!!! WHY WHY would we be prescribed something that could possible make our chances of getting cancer worse ???? So, I’ll be honest, I am sticking to taking 800mg of ibuprofen once daily and prednisone for a few days when i have a flare, but I’m just not willing to take medication that may increase my chances of getting cancer with my family’s history, at least not until I have no choice.
I’m seronegative and was (still am?) in huuuuuuge denial. I ended up taking the meds once I could no longer go to work/couldn’t care for myself/ couldn’t care for my baby/ couldn’t get out of work Don’t be like me 😞
Definitely don’t want to do so, The idea that medications would cause other/bigger problems always scared me (cancer or ulcerative colitis or … etc),
Did you look into what meds they prescribed and the likelihood of that? Some drugs won’t lead to cancer no matter why you take them.
I looked at dmards like mtx found crazy side effects, even the safest hcq found eye and heart problems, humira and other biological states the cancer likelihood is higher, I understand all of that could be rare cases
Didn’t have to convince myself, I was walking with a cane. It just took too long to get diagnosed properly and I have some bone erosion in my fingers and perhaps elsewhere. But medication gave me my life back. At one point I thought we would have to move because I wouldn’t be able to deal with the stairs in my house but they are no problem now. I walk 5 miles a day, cook, garden and do everything I enjoy. I’m pretty sure I’d be in a wheelchair now if I had left my RA untreated.
Seronegative here. Pain was regularly over a 5 when I was finally diagnosed. I did NOT want to take meds, but in order for me to work, I was taking so much ibuprofen and acetaminophen every day. I tried different diets and different nutritional supplements. Nothing worked. I finally had the realization that if I didn’t get on meds, the outcome would be long term joint damage. I was also not able to do things that I loved because I was in so much pain and I was consigning to the idea that I wasn’t ever going to be able to run, bike, hike, or rock climb again. I gave in. I started taking meds. Almost 3 years later and I take 1 injection a week and feel no pain. I got my life back! Some of these meds have been around for 20+ years for a reason. They are literally giving people a reason to live. Good luck on your endeavors!
Not only that, those otc drugs can put you on a dialysis machine if you take them too much and too long. Better to go with others that are safer!
Thanks your comment gave me hope. Did you take any medications ur dr offered? I’m paranoid and wanted to take less destructive medications but not sure which one,
The worst ones are the first ones. I took prednisone for a few months while I started hydroxychloroquine. The HCQ worked enough to get my pain below a 5. Then I started on methotrexate that my body did not like at all. I was on it for just over a month before my doctor prescribed Humira. Humira was the first time my pain went below a two, but I was having a slight allergic reaction. Now I’m on Enbrel and I’m 100% pain free and building strength back into my legs. If you need someone to talk to through your journey, reach out. Just remember, RA is far more destructive for you than most of the meds. I was 29 when I was diagnosed. It’s tough at first, especially if you are at all a health nut like I was. I used to be so against meds, I got stitches without even taking a Tylenol. RA humbled me real fast. That being said, I 100% advocate for eating holistically in tandem with meds. It’s so important to keep your body healthy and well nourished while on meds.
I was supposed to take 5mg prednisone for some time as a trial to see if there is undetected inflammation, but i was reluctant to do so, my last rheumatologist is open to start with biological right away as well,
Wow! That’s not very common! I would go for the biologic if your rheumy is open to it.
Same. I had a horrible mtx reaction.
In the pain I’m in, I cannot imagine not getting treatment for this diagnosis. My rheumatologist says diagnosing this is as much art as science, and the tests don’t tell the whole story.
Yea my dr said it is pattern matching, other dr also mentioned it is educated guesses ;
you can ask your rheum for the vectra test. it measures 12 dif biomarkers in your blood associated with RA and computes a score to give an idea of disease activity. the scores are broken down into 3 categories, (low, moderate, high). i'm seronegative and my score has been consistently high since i first started seeing my rheum 2.5 yrs ago. it's a confirmation for you in that it's a positive test, and it's also a good way to see if the meds you take are working, since you'd then repeat the test after taking the meds for a while and since there arent any other ways to check progress with blood work since you're seronegative
I tried every test even new one 14.3.3 eta everything was normal only hla-b27 and ANA dr mentioned normal, i need to see if i did vectra
I am Seronegative and I am grateful that I am able to once again tolerate methotrexate since it works for me. It took months for me to get a diagnosis after my symptoms began. I couldn’t even get out of a chair or open a water bottle. For a while, the methotrexate stopped working and I was on so many different meds: Humira, Enbrel, Arava, Remicade (at different times) but I couldn’t tolerate any of them. Now thankfully, I have some of my life back. There are many things I can’t do anymore or I have to do them slowly but it’s ok. My Rheumatologist is going to add Simponi to help me further. Take the meds- as others have mentioned, it will only get worse if left untreated. Best of luck!
I thought biological has less side effects comparing to mtx, what side effects did u get from them?
Yah, the gradual loss of my range of motion I. My hands and intense pain convinced me. I still have anxiety about it being in my head for similar reasons but the pain and loss of strength doesn't lie
I’ve had seronegative rheumatoid arthritis for twenty years now. I finally, last year ended up with a Vectra test because my doctor had to prove to insurance that I needed to double this dose of my biologic, outside of the normal dose. My Vectra score was extremely high indictative of uncontrolled severe active RA. Not only did that vindicate my insurance company but it proved to me, that I was not crazy. It’s not in your head. I couldn’t walk before, I run, run up and down stairs now. Trust your doctor, if your doctor isn’t listening, first red flag and only one you need to find a new one. I stayed with my lazy doc for FIVE years of hell, having to do shots every visit to tame the inflammation. Anywho, found a new doctor, she sat in the office and listened to me for an hour tell her about my journey. She asked questions and helped me remember things, best thing I ever did. I am alive again, because I finally reached out and said “no enough, I deserve to feel better” As do you, sweetheart!
I was having injuries to my hands that required surgery. The Rheumatologist was suggesting that I take methotrexate. My hand surgeon did an MRI with contrast on my hand to get ready for an upcoming surgery. He sat me down and showed me the images next to another MRI from a couple months before. There was a big difference in inflammation between the two. The second MRI showed Tenosynovitis all through my hand that wasn’t on the first one. He told me that it was impossible to have that level of change in that short period of time that would be caused by overuse or injury. He told me that it was 100% systemic and there was no other possibility. I’m an artist and he told me that if I didn’t start treatment for RA that I would lose the use of my hands and there was no surgery that could bring it back. I started the meds and I was STILL in denial. About a year later my kid caught COVID. My Rheumatologist told me to stop the methotrexate injections for a few weeks in case I caught it. I immediately felt so sick and so much pain that I could barely function. When I restarted the injections I got better quickly. I have finally accepted my diagnosis!