Does anybody here have RA and Lupus?

Hi

I have RA and Lupus, anti CCP 92, anti D's DNA positive, and ANA Homogenous 360. Oddly inflammation markers always normal, always (oddly Anyone else???)

It seemed every major RA drug I try, my lupus don't like it and I end up with more joint pain. I have tried Humira, Enbrel ( which I later learned Lupus patients couldn't take!) Lefludimiude, and now Xeljianz. All increase my joint pain!

If you have RA +Lupus, and don't but have some drug cocktail suggestions, I would greatly appreciate it as I am miserable!

Currently I'm just doing plaquinil and prednisone. Methotrexate failed too😓😓

Thanks!!!

17 Replies

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  • I don't have any help, sorry ❤️

    Can I ask though how they went about diagnosing both? I've had the RA diagnosis and honestly I forgot to ask about Lupus (and I meant too!).

    I know I have RA, it's just that Lupus would explain the rest of my symptoms. I go to urology in 2 weeks because of on going bladder/urine problems and I will ask next time but that's not for 3 months.

    I hope you find relief!!!

  • Lupus often presents with a butterfly rash on the face. They have ruled it out for me but not so sure. Genetics indicate high risk of Lupus and MS. My anti CCP is 300.

    My Nuclear AB was also positive, indicating a connective tissue disorder. It is like this new IGg4RD my Rheumy and team, just developed a test using Mass spectrometer. It is the first test to accurately diagnose this autoimmune condition. It is often misdiagnosed as cancer. It creates fibrous tissue in body. Not unlike RD it can happen anywhere in your body. It does not affect two people in the same way. It is amazing any of us get diagnosed lol

  • Thank you! I don't understand why these are all so hard to diagnose. My primary care told me they still don't know very much about how the body works. Which is hard when you are dealing with it! I have a rash but my rhuemy feels it's Rosacea. I guess I'll see how my kidneys are doing here in a few weeks. I'm just so happy to have found a nice Rheumatologist! And be on a path, any path lol.

  • The new approach referred to as progressive medicine or functional medicine. This doctor states that western medicine has evolved to suppress symptoms and target disease. The new approach is to focus on achieving wellness. Also on facing symptoms as systemic. Rather than treating each symptom as a separate issue. I am just beginning to follow it but very reserved.

  • Please keep us updated. It sounds much better then how we are treated now. My rheumatologist told me RA is systemic and for some people, like me, the systemic inflammation is more debilitating then the arthritis portion. He said we will hopefully deal with the inflammation and systemic that is happening with RA and see what symptoms are left over. I wish us all some relief. Dealing with systemic autoimmune diseases is no joke.

  • I am seropositive and my labs are eye popping lol as my Rheumy puts it. My CRP was 84.7 currently .05. But as stated earlier, my inflammation only dropped after stopping all drugs. It took sixteen weeks and was brutal but it has stayed down.

  • Oh wow sorry to hear that. For me its all in my bloodwork . ask your rhmmy to test your ANA and anti DS DNA. Those are the tests for Lupous. I hope you don't have both.

  • Early on I was told I had Rhupus as I had similar test results as yours. High anti CCP and ANA 1:320. All other tests were negative. (However, later when I saw another Rheumatologist he tested for dsDNA which was negative)

    My first Rheumatologist put me on Humira but I did research and found that Humira can cause drug induced Lupus so I asked for another ANA test and it went up to 1:640. I didn't have any Lupus symptoms but I sure as heck didn't want any showing up.

    I switched doctors and asked if I could try Orencia and although he said I did not have Lupus if I were to develop it later that Orencia was a good choice for both. He also said the Rituximab would be another good one to try. Keep in mind this is just from my doctor but perhaps you can ask yours what he thinks?

    Orencia works very well for me but as you know even if we have similar biomarkers the medication still doesn't work the same for everyone.

    I hope this helps.

    Best

    Lucy.

  • I'm going to ask for orencia. Right now I'm taking a break from biologics.Lucy, are your inflammation markers ever high? Mine are always low

  • Hello,

    I am query lupus (have been for the past 2 years). I have all the symptoms with the exception of the blood works. I was recently diagnosed with psoriatic arthritis, so now my treatment needs to cover both. The painful joints (the worse being in my hands) and the fatigue have consumed most of my 2 years. I'm not even sure if my treatment plan is the correct one, but if it helps here's a list of my autoimmune meds.: hydroxychloroquine, arcoxia, methotrexate, cocodamol, vit D and folic acid. I also suffer with chronic back pain and for this I take pregablin and nortriptylline. It works out at 16 tablets on a good day, 24 on a bad day. And if it's my methotrexate day and it happens to be a bad day, my tablet intake can be up to 30 tablets on that day. This sounds horrendous as I type, but it has become a necessity in order to negotiate my day as a 'normal' person. Yes, I know there's no such thing as 'normal', but I'm sure you know what I mean.

    I think everyone with an autoimmune condition or with multiple autoimmune conditions will have a different treatment plan that changes as they get older and their disease(s) progresses . It may be worth you making a list of what works and what doesn't for you. Make an appointment to see you rheumatologist (if you haven't done so already) and go through your treatment plans of the past and what is potentially available to you now. There are drugs known as biologics, investigate this and bring it up in conversation at your rheumatology appointment.

    I wish you all the best with sorting out your care.

    Nicole x

  • Hi only have RA but my inflammatory markers are always normal. Go figure.

  • Do you still have a lot of joint pain and swelling, are you on biologics?? Same thing here inflammation markers always really low actually masked me doubt I have this disease.

  • My ESR never goes above 4 and my CRP never above 0.01. It's actually much more common than you think and you can definitely still have RA.

  • That is good to know. Because my inflammation markers are always shockingly low, I always doubt this.

  • Hi! I have Serro negative RA-my lab tests are a perfect picture of health and for years docs have been telling me there is nothing wrong with me although I was in horrible debilitating pain and couldn't function from fatigue. Finally I found a good rheumy, he ordered X-rays and MRI and there it was in plain sight!!! Full blown RA😡

  • Hi I have RA and Lupus.

    Trish

  • I developed Pityriasis while on Orencia. It really is a case on trying different ones until you find one that works! Problem is none have worked after two years. When is enough , enough? Why keep doing drugs? I keep hoping I will find that magic bullet !

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