Newly Diagnosed Sero Negative Rheumatoid Arthritis

I was just diagnosed today with Sero Negative R.A. I've been dealing with symptoms since the end of May. My hands were first to start bothering me. I was on a business trip to CA, I live in MA, and after flying for about 4 hours, I noticed my hands really hurt. I couldn't make a fist. I attributed it to just the normal swelling that can sometimes happen when you fly. But when I got to the hotel, I was extremely exhausted. I slept for 12 hours without moving and when I tried to get up, I couldn't move. Everything hurt, my ankles, feet, knees. My hands were still swollen and in pain also. It was then that I started thinking something wasn't right.

When I got home from the trip, I was still so exhausted. I could fall asleep anywhere and my hands and feet were still in pain. I already have back pain due to some bone spurs which press on a nerve. I have tylenol w/codeine for this and found that I was taking more than prescribed because of the other pain. So I called my doctor's office and went in to see someone. The Nurse Practioner did the squeeze test on my hands and I was in excruciating pain from that. And it hurt for days later. She said just looking at me, my symptoms it was very suspicious for R.A. I was stunned. I never even considered this. I thought she was going to say I had some weird swelling put heat on it and it will clear up. She took blood and hand x rays. Blood was negative and that's when I heard the term "sero negative". Xrays showed some minimal osteo. She put me on prednisone 30 mg for 10 days and that was it.

I questioned just stopping the prednisone without a taper (my kids had been on this for bronchial stuff and always tapered) and I was assured this was not that high of a dose and I'd be fine. Well that was not true. The day after my last dose, I was in agony. Almost worse than when I started. Oh I forgot to say that the prednisone did help with the pain. But it made me ravenous. I was so hungry. And it made me kinda racey. Couldn't sleep at night because I was wide awake and hungry !

I called the office and let them know I was in a lot of pain and they put me on celebrex. I had a reaction to it. Itching all over.

I saw my own physician today and he said immediately that I looked exhausted, swollen, my hands were hot and swollen. I also forgot to mention my younger brother has had severe rheumatoid arthritis for 25 years. And, my mom was diagnosed with Lupus at 72, drug induced. And my mom's brother has rheumatoid and her grandmother. So I guess it's in my family. My physician said I have sero negative r.a. He had me have more blood drawn to retest my levels but he is 100% sure it's sero negative r.a.

My physician said that he has seen in menopausal women, when the hormones are bottomed out, rheumatoid symptoms. The hormones are bottomed out and the immune system goes crazy. So he is going to treat me with hormones along with the following. And, along with introducing myself, I'm wondering if you all might have seen this type of treatment. He said he likes to treat this aggressively to try to halt it , to stop any further damage. And he's going to send me for a hand MRI to get a baseline for the inflammation.

Medication:

Hormone replacement

Methotrexate one time a week

Prednisone 30mg for 2 weeks and then start to decrease to 20mg see how I tolerate a lower dose.

DHEA - herbal hormone

Tylenol w/codeine for pain


I'm feeling a little overwhelmed and also in disbelief that this is happening. I've been so exhausted that I have missed some work because I couldn't get up. And then gained weight while taking the prednisone because it made me so hungry.

Thanks for listening!

Hi,
Your story sounds similar to mine. I've was diagnosed 1 1/2 years ago, and I'm 26. I swelled up all over and was in considerable amounts of pain. The docs first started me with methotrexate and prednisone. The pred. will take the swelling down and with that the pain will subside. I remember reading somewhere to watch salt intake as that will help with the water retention/weight gain. (Of course I ran across that after I was off my high dosage!! LOL)

Yes, you take methotrexate once a week. This med takes a little while to work up in your system. (I don't want to tell you this, but it's 4-6 weeks.) I'm not sure why the spilt dose--I take mine all at once. The major complaint is nausea--maybe help with that? (zofran helps wonders...ask your doc for a prescription if you end up struggling with nausea.) You are not on a very dose so the side-effects will/should be less, if any. Mtx. also comes as in injection, and that's what I recently switched to. Our bodies are only able to absorb up to 20 mg. of Mtx. through the digestive track, and I needed to up my dose. (Just to let you know, I take 20mg by injection, and I'm 115lbs. with no noticeable side effects.) I do remember my doc telling me NOT to read the handout sheet from the pharmacy, because it is geared for cancer patients who take VERY high dosages. (I did anyways and it scared me too!) I do take 1 mg folic acid "to help with the long-term side effects": which ones I'm not sure, and a monthly blood test.

This is the basic start-up regime...if things are not working you can add a biologic med to the mtx (I've added enbrel and now orencia) or go to a higher dose of mtx.

As for working on Monday--you should be fine! I take my mtx. on Fridays and feel no difference working. I was a school accompanist and all our competitions and concerts were on Fridays, so they were very demanding days.

I hope this helps you. Be patient, ask your doc lots of questions so you understand everything. It's a journey. The good news that I keep hearing is that because of the new drugs that are out, RA is not as crippling as what it used to be, and they keep coming out with more!

Once you get your results back from the mri, then go and find a good RA Doctor, as maybe another medicine added in might help better, add folic acid its a suppliment. Once a week methotrxate is correct, and if it hurts your stomach then you could get put on self injections and contact your brother as this could be helpful for you both and maybe you could get better advise from him. The prednisone might have messed up your hormones, so I would be questioning the hormone replacements go see an endocrinologists about that. Many well wishes, sorry to be slow in responding but it is a weekend and many members are away but will be back so a little patiences is needed. Hope that helps, keep us posted as we do care. (I'm sero negative RA, was dx with hand mri) hope your got caught early as one damage is done, its done meds only prevents further damage.

Glad I helped you and had the courage to try methotrexate. I'm sometimes shy about posting, so it encouraged me for you to say you appreciated the comments! It sounds like you have a very caring doc who is compassionate about your worries and wants to make you better! Hope you enjoyed your day at work with no noticeable effects of the methotrexate. :)

Hi Diane,

I have never been pain free since I got RA but it becomes 2nd nature after time. It did get much better for me. I became a total invalid at onset. Had to be fed, couldn't walk alone etc. It took a mega dose 40 mgs prednisone after being on MTX for nearly 2 months to turn me around. I was on that dose for a few months before I slowly (1 1/2 years) tapered off the prednisone completely. My liver enzymes elevated slightly during year 3 and Dr. took me off the MTX to see if they would come down. At that point I was not pain free but the pain was 2nd nature like I said and I could do everything I had to do. What we found is that I didn't feel any worse off the MTX then I did on. So we agreed I'd stay off. I'm in year 5 now and right now I'm feeling crappier but hoping it's stress induced and that it won't come back with a vengeance.

I wish you all the best with your journey.

PS

I'm sero negative too.

And Ms Weary, wow. You were that affected with the r.a. that you were almost an invalid. So sorry!! From the little I've read (there are volumes on the web) I thought the sero negative r.a. was considered to be not as debilitating as the sero positive. I guess not!

As I've said above, my brother has r.a. and his is severe. He gets the nodules and has had complications with infections but he powers on. He has 3 young girls and a wife who doesn't work so he's the income earner. And his job is physical. He hasn't said much about fatigue but I know he has the pain. He doesn't take anything but the Enbrel and if needed a tylenol pm at night. I feel like I'm not very tough :( And I know I shouldn't compare because everyone feels differently and has their own journey.

Sorry I'm rambling. Guess I'm having a bad day...

As for prednisone, at 30 mgs per day I would have an immediate response-I have been on that dose twice and the first time I went from being unable to dress myself, shower or walk across the room to doing all of that 4 hours after my first dose. 30 days later still on 30 mgs I was working a full day, carrying kids around and climbing stairs but, still had a little inflamation in my hands and elbow.
Most people report it doesn't work that quickly for them but I over react to almost all medications.

Hi Kitten,

You can google "seronegative rheumatoid arthritis" and there will pop up a ton of information. I had never heard of it myself until my first appt with the nurse practitioner when my hands / finger joints were swollen. I never ever suspected I had r.a. When I went in, I thought for sure she would say it was maybe osteo because as a kid, I fell , hurt my knuckes, especially on the left hand (I have some scars). Plus I use the computer keyboard and thought I was just "getting old". But r.a. looks different than osteo and reacts differently to meds.

Before she took the blood work, she did a "squeeze test". I didn't know that was what she was going to do as she was holding my hands, looking at them , manipulating and then she squeezed and I winced in pain and felt like I was going to shoot thru the ceiling with the pain. And for several days after, my hand hurt. That's when she said said "hmmm this looks like r.a. " She said it shows up in women, in their 40's - 50's, sometimes post menopause. She also added that there were blood tests they could run but that isn't the only way they diagnose it. In fact, many come back negative but the disease is active. They test for an r.h. factor and when that comes back negative, they can diagnose as seronegative. But they also do inflammation markers and other blood tests. Mine were negative but my symptoms are positive. The other diagnostic test they do is an MRI which will outline the inflammation. I need to have one done so they have a baseline to monitor the disease where mine is not, at this time, showing up in blood.

Also, if there is r.a. or some type of auto immune disease in your history or your family's, this increases the odds that you may have it. My brother , has severe r.a.. and his did show up on blood work. My mom was diagnosed with lupus at 74. They believe it is drug induced so that is a little different but still auto immune. I have had thyroid issues and I'm on synthroid for hypothyroid. The n.p. told me that is one of many auto immune diseases too.

When I left the doctor's office after my first visit, I think I was in shock. I wasn't accepting that this could possibly be r.a. And when my blood work came back negative, I thought "well maybe she's wrong and I don't have it". But my symptoms all point to r.a. And then reading documents online and reading posts here with people who were almost crippled with r.a. and had negative blood work, I am a believer. I read somewhere online that 30 % of people with r.a. never test positive. And on the flip side, people who do not have r.a. can test positive. The test is used in other diagnostic testing.

There is a website I went to which has a lot of good info - rawarrior - (If I'm not supposed to post another website, I apologize and will remove) Between healing well and that website, I've been reading and trying to learn. Even though my brother has r.a., it's different from what I'm experiencing and I am finding with all I read that this is the case. Everyone's journey is their own with their own unique responses to treatment.

I hope you find your answer soon!

Thank you very much...The doc got back to me today and all my blood tests were negative....That is all I found out and now I can't get back into see him again til Sept 12th. What now?...Everything is so strange and I don't know what to think anymore...Starting to doubt myself at this point....It is all sooooo strange!!! So, if I understand you correctly because I have the symptoms and my daughter has severe RA, I don't necessarily have to test positive on any of it to have it? Could it be that I am having symptoms before it shows up in my blood? does it eventually if not at first? sooo frustrating...Even my sed rate went down from 29 to 23...So I am one point below. The other two tests were within range but at the top of the ranges plus my white cells are high and platlets are low and low iron...Something is def going on, just what? Sorry to keep complaining, I am just so frustrated I don't know what to think or do.....
Thank you for your help,