Friday, January 08, 2010 ~Suzanne~ asks

Q: Does anyone have Sero-Negative ra?

I was diagnosed with Sero-Negative RA about a year and a half ago. I had my blood work done again last month and my ANA or RA factor is still negative! My first Rheumy diagnosed it as RA. I then went and had a second opinion. He also said I have RA. And in the beginning when I didn't even know what I had, I saw an internist that said I had a "mixed connective tissue disease."

If I'm correct, isn't RA considered a mixed connective tissue disease? I have all the horrible symptoms of RA, but my blood is always Sero-Negative. I've been tested for Lupus, Sjogren's Syndrome, and the whole nine yards!

I do have the Sicca-Syndrome though as my eyes get really red and dried out. My mouth can get so dry that my lips stick to my top teeth when I try to talk, and I can't make saliva. But then other times I can. *Sigh*

I've started to get painful cramps in my fingers and my toes. For NO reason. I can just be doing something, and all of a sudden my toes will cramp, or my fingers will cramp, and I have to bend them a certain way to help get rid of the cramps. Frustrating when I'm trying to sew new curtains, etc.

I have bouts of crushing fatigue, then I'll get bursts of energy that come from nowhere. I always over-do myself when I'm feeling good, and then I pay the price after a few days when all the fatigue returns.

Does anyone know what I mean? Mood swings too. Grumpy and tired for a few days, then energetic the next few! So very unpredictable! I hope someone can shed some light on this, so I won't feel like the "Lone Ranger"

Thanks,

Scryingeyes

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Answers (5)

Brad, Health Guide

1/ 9/10 1:18am

Hi,

I am sero-neg RA. My ANA is up, but RF is down. I am positive for Sjogrens and show some markers for Lupus PA as well. My Rheumy, ortho and gp all agree it is RA though. Your symptoms sound exactly like mine, less the energy burst! I could use one of those! :) This is why they cannot dx RA with just blood work, it takes a full history and exam PLUS the bloodwork to get a correct dx. What meds are you on? I was on humira, start rituxan next week, also Arava, Voltaren, Pred, and Vicodin.

Good luck to you, I hope you feel better soon.

Brad

~Suzanne~

1/ 9/10 11:55am

Thank you for answering me! It's nice to know I'm not the only one in this boat! You sound exactly like me. I also have Sjogren's, Fibromyalgia, Sero-Negative RA, and Degenerative Disc in my lower back. My Rheumy says that I have slight cross over symptoms of Lupus and mild (Scleroderma-sp?) on the palms of my hands, and says it's common with RA. But all in all, most of the time I do rather well! I do have to stay on a tight schedule and can't over do anything. I have to go to bed at about the same time each night, or I really get bad. Also, I can't handle much stress at all. If I get stressed out, then forget it. It takes me a few days to recooperate. *SIGH*

I was taking Methotrexate lately, and it made me feel suicidal. I kid you not. It was horrible. It took me about a week to get it out of my system and start feeling better. All I did was want to stay in bed, cover up, and go to sleep. I was really starting to worry. A few years prior to this episode, I took the Methotrexate for about 6-7 months, and I started to get depressed then too. I waited, tried it again recently, and the depression kicked in sooner than it did originally. I just can't take that drug any longer. They'll most likely put me on something else at my next appointment.

Right now, all I'm taking is one 10mg. of Prednisone daily. It helps with the swelling and inflammation. I used to take the steroid pacs when I got really bad, and they made me feel like my old self again. Thing is; they won't let me take them all the time. Prednisone is okay, but the pills that come in the steroid pacs (methoprednisolone sp?) is the better of the two. They seem to work wonders! By the end of the pac, I get alittle hyper and can't sleep.

I also take an old medication called Talwin NX for pain. Since I'm allergic to Vicodin, fentynal, or anything with Codeine, it's about the only pain med I can take. It helps, but not like I wish it would.

I understand about not being able to dx RA with just blood work, and I've taken many full exams plus tons of bloodwork. It took them about 8 years to dx mine. Silly me-would just rely on my regular doctor to find out something, and it never dawned on me to get to a Rheumy! I just never thought it would be RA. So there was a lot of wasted time. The regular doctor just kept telling me it was Fibro. So I just hesitated to go to a

Rheumy. Finally he suggested I go to one, and that was the beginning.

Well, good luck to you too Brad, (and your wife) I do hope you both feel better soon!

Suzie

Vicky Gordon

1/ 8/10 9:23pm

I was diagnosed with sero-negative RA about 6 months ago. I do have a positive ANA but everything else is negative. My rheumy says I have all the symptoms of RA and she has started me on treatment and I am doing much better but still have my good and bad days. I know exactly how you feel, some days I feel wonderful and other days I am so fatigued and in so much pain I don't want to even get out of bed. It's very hard but finding others who understand what you are going through has really helped me out a lot! I am currently on prednisone,plaquenil,diclofenac and methotrexate injections. Are you on any treatment?

~Suzanne~

1/ 9/10 12:51pm

Thanks for answering my post!

I understand what your going through too. I have mostly good days, (well lately I have had.) If I get stressed out or try to do too much, then I get myself in a mess. I find that I have to stay on a tight schedule. I have to go to bed around the same time each night. I have to take everything I do, s-l-o-w-l-y. On good days, I have a tendency to over do it, and I end up paying the price for the next couple of days, sometimes longer.

The only medication I take right now is one 10mg Prednisone daily. The reason for this is because Methotrexate (I hate to say this) but it made me feel horribly depressed with thoughts of suicide. This is not my normal thought process by all means. Sure, I get down in the dumps, but nothing like that. It happened twice. Last year I took methotrexate for about 7-8 months (something like that) and the same thoughts and feelings started to happen but not as quickly as they did this time around. I just can't take it. Some people do well on it and that's wonderful, but for me, it's a horrible drug.

I suppose my Rheumy will try me on something else soon. I really hate it when I have to start a new drug. I'm hypersensitive about any or all the symptoms these drugs may have. I'm sure there will be something I can take though.

Have you ever taken the Medrol Pacs? When I get in a bad flare; I get a round of the pack and I feel fantastic! I feel like my old self again. I'm happy, very energetic, the inflammtion goes away, I can move around good and get so many things done in a day, it's wonderful.

But unfortunately, the doctors say it's not good to take them all the time. I'm like WHAT? you have to be kidding me. How can something make me feel that good, and be bad for me? I argue back with them and say, "Which is worse; the side effects from a drug like Methotrexate or Methylprednisolone? (which is the pill in the Medrol pack.)

Sometimes I just don't understand a doctors thought process! I have NO side effects taking Methylprednisolone at all! If they could just give me a maintenance dose of that, that would be great. But they won't *sigh*

I hope you're feeling good today and once again, thank you for your reply!

andrew

1/ 9/10 4:08pm

You are not alone. Upwards of 30-40% of people diagnosed with RA are sero-negative...including myself. It's a clinical diagnosis and bloos tests are but one of the several factors used to determine if someone has RA. You're not alone. Make sure you get started on treatment as soon as possible in order to avoid long term damage.

Andrew

http://livingwithra.wordpress.com/

~Suzanne~

1/ 9/10 5:09pm

Thanks Andrew for your input. I didn't realize the percentage rate of people who are Sero-Negative, wow that's pretty high. As I said in one of my prior posts, I had been taking the methotrexate but unfortunatley I can't take that medication any longer. It really caused some ugly depressing feelings. My body is weird anyhow, it manages to be my worst enemy!

I'm on prednisone, and am waiting to see my doctor again to see what options I have. I know there are all sorts of new drugs coming out like some that blocks syk kinase, such as sky kinase inhibitors that you can take twice a day. Unlike biologic drugs that are given by injection or infusion, this new rheumatoid arthritis drug is taken by mouth, which is a huge plus! Maybe I'll be put on one of them. My options right now are slim because I can't take the DMARDs, so I'll just have to wait till I get in to see the Rheumy.

She is so good it takes me 3-6 months to get an appointment. I live in Montana, and a good Rhuemy is far and few between. I've recently made a big decision to move to a Southwestern climate, which also has a bonus of having a wide selection of Rheumatologists and much better medical care. So in about 6 months or so I'll be soaking up the sun, and only having to wait 2 weeks to see a new doctor. It will be stressful moving that is for sure; but I've made a vow to myself that I'll take my time no matter how long it takes to unpack boxes and get settled in. :) Stress is my biggest enemy!

I hope your doing well today! Thank you for your reply and also the {living with ra link.}

*Scryingeyes*

sunshinegal43oh

3/12/10 2:58pm

I was diagnosed with RA in late April of 2009. When my symptoms first started I went to see my Orthopaedic doctor. He told me he thought I had RA and to see a Rheumatologist. I then went to a Rheumatologist who told me because I was sero-negative that I had Fibromyalgia. On my second visit to this guy, he tried to give me cortisone shots in my back, which I refused, and he then accused me of trying to get drugs from him.

Luckily my 2nd attempt with a Rheumatologist went great- she said I definitely had RA and started me on Methotrexate right away. However, my pain didn't get better, and she ended up dumping me because she didn't know how to treat my pain.

I'm on my 3rd Rheumatologist now. He started me on Enbrel 9 weeks ago. I started feeling improvement by the second injection- my swelling and inflammation were way down and I was feeling great! Unfortunately, for me, Enbrel seems to have stopped working and I'm not feeling so great again as I'm very swelled and inflamed right now! I've got an appt. with my doc to discuss this.

So, sometimes us sero-negative RA peoples have to push and push until we get the right doctor or the right diagnosis!

I wish you luck and hope you find a doctor who knows how to listen to you!

~Suzanne~

4/ 7/10 4:57pm

Thank You for writing back, I appreciated it very much. I'm sorry your on your 3rd Rheumy. That must be difficult. I have a woman doctor who is cool. She's upbeat, and right on! I'm seeing her this month. I haven't seen her in 6-7 months, so I'm eager to see her again. My Sjogren's gets pretty bad sometimes. Then sometimes it's not to bad. But it's never "gone." I still have all the ugly symptoms of both diseases though.

What's going on with me now is the inflamation. No matter what I do, that inflammation just doesn't let up. It's gotten to the point that the Medrol pacs hardly work any longer. I knew this day would come. I'll have to go on the Biologic type medications. They're probably the only thing that'll work now. I just hate going through all of it because my body reacts badly to medications now. It'll be trial and error for awhile till they find what works for me. This is a pain in my bum!

Also, my left knee is acting badly. What it does when I walk, is pop or crack. I workout on a treadmill when I have the energy, and that knee will pop, pop, pop. I walked a mile on the machine and my knee (I counted it) popped 7 times in 30 minutes. (ouch-sigh) I bought an elastic type knee band which supports the joint. It works, but I still had 1 or 2 pops even with it on. I'll have to ask the doctor if I should be walking a mile and a half? I sure don't want to stop, I need to lose weight.

I agree with you. Us sero-negative people DO have to push and push. Right now I'm fortunate to have my Rhuemy, she's really good! I hope your feeling better today. You take care and I hope to hear from you again.

Thrive With RA™

3/29/11 8:12pm

Hi Suzanne,

Looks like you wrote this post over a year ago. I'm new to the RA Central community and new to the online RA community in general. I have seronegative, Severe RA. I've had it for almost a year. Thankfully my internist saw the signs of RA and sent me to a Rheumatologist right away. All my labwork was negative for RA, but my Rheumatologist diagnosed me for it anyway. I believe my diagnosis was easier to make because my onset was so quick and so severe that it wasn't hard to misdiagnose it, even with negative responses on the tests. I think perhaps others with seronegative RA may have a harder time getting a definitive diagnosis if their symptoms are more mild.

I hope your med regimen has proven successful since your post in 2010.

Best Wishes to you!

Q: Does anyone have Sero-Negative ra?

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