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Seronegative rheumatoid arthritis

Jabmzmom profile image
33 Replies

I was recently diagnosed with Seronegative rheumatoid arthritis. I was wondering if anyone else has the same thing. I am currently taking prednisone, methotrexate and plaquenil.

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Jabmzmom
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33 Replies
Jabmzmom profile image
Jabmzmom

Thank you

CWeatherford profile image
CWeatherford

I am also seronegative and am currently on Arava. I was on both Arava and Humira but the Humira was causing my flares to increase in frequency so I recently called my Rheumatologist and he told me to stop that one. Will find out next month at my appointment what he wants to do next! There are quite a few people who are seronegative. I'm also on (myRA Team) which is an app support group for RA.

shareasmile profile image
shareasmile

Hi Jab! I also have seronegative RD. I was diagnosed in 2013 and can tell you that this autoimmune stuff is a roller coaster ride! Not to disparage you though. I have found good information and sound advice on this sight and on NRAS through healthunlocked. This community (American RA Warriors) is fairly new so there are not as many followers that will respond. Hopefully, membership here will continue to grow.

As far as your treatment goes, those are the medications that I was prescribed early in my diagnosis. You will find that prednisone is a miracle drug that makes a huge difference almost immediately. It is usually given to provide initial relief until the other meds can set in and start working. Since it is not good to remain on prednisone for long term, I hope the mtx and plaquenil take effect quickly. For me, it took 2 years to find a good med that controls my RD. I went through plaquenil, mtx, leflunomide, and Humira before getting real relief from Enbrel and sulfasalazine. Everyone responds differently to treatment. I hope you have a good rheumatologist that listens and is compassionate as that is half the battle.

Don't be shy about asking questions! There are many good people here with lots of experience, similar stories and good support.

Take care!

JennaB profile image
JennaB in reply toshareasmile

I just love "the prednisone effect" - so glad I'm not alone ;)

I am new here too, but I don't feel new to RD. Currently on MTX (back to pills) from injectables and Humira. I'm considering coming off the Humira and was wondering if you might share what that was like for you? I didn't realize Enbrel is different?

I'm currently in a tightly controlled state and learning about what remission looks like for me.

Kindest regards.

shareasmile profile image
shareasmile in reply toJennaB

Hi JennaB!

Coming off of Humira was easy because it didn't work for me. My rheumatologist started me on Enbrel without any delay and it worked almost overnight. I had no bad side effects from the switch that I noticed. Perhaps because both are biologics. Each attacks your body's inflammatory cells and processes in different ways.

Keep in mind that seronegative RA can just be an initial diagnosis when it appears that you have a connective tissue problem, but blood tests show nothing. I had a recent ANA done that was strongly positive at 1:640. Previously, it was very low/negative at 1:80. Now my doctor suspects lupus or MCTD. This stuff can be an ever evolving disease. Don't despair, but push for good care.

All the best to you.

Chances26 profile image
Chances26

Yes I am Seronegative, Im on Methotrexate.

Started with 4 a week, Rhuem just increased it up to 6.

Taking folic acid and Aleve for pain

Jabmzmom profile image
Jabmzmom in reply toChances26

I am on 5 methotrexate, folic acid, prednisone and plaquenil.

Deb-h profile image
Deb-h in reply toJabmzmom

Be leary if the Prednisone .. cause more damage then it helps. Monitor your glucose carefully. Metabolic syndrome is hateful and directly linked to the steroids

Valentinaswrld profile image
Valentinaswrld

Hi I have never heard of that will you explain what the Dr said on how does effect your joint movement pain stifness? My Dr said I Am positive for Ra and positive for lupus but can't diagnoses me. I just have the autoimmune Disorder and she gave me the steroid medication also methotrexate I have not taking that's medication. I know there a better way. Am started to take probiotics I stared to have more blow movement I feel a lot better no pain for hours. Its in the got that need to be heal.. Let me know ok

Jabmzmom profile image
Jabmzmom in reply toValentinaswrld

My rheumatologist said all my blood tests and x rays are normal but because i have morning stiffness and swelling of my wrist and hands he said it was seronegative rheumatoid arthritis.

Jmiller46 profile image
Jmiller46 in reply toValentinaswrld

You need to do better research. Rheumatoid Arthritis does not only affect the joints. It also affects your organs. Heart, lungs, liver, eyes. You would be better served listening to your Doc and taking the meds. They are a little rough but it is far better than having your organs shut down eventually!

Deb-h profile image
Deb-h in reply toJmiller46

I agree. I have had R/A for years and decided "not to take my medicine and take control". I called it the Royal Flush when I dumped them in the toilet. Boy I felt empowered! Then shortly after.... the biggest fool. You need to take the methotrexate with a side of prescription strength folic acid. You should also be in Plaquinil if Lupus is suspected. I guess the bottom line is none of us want to take the drugs.. but we hurt ourselves more by trying to doctor ourselves. Find a good Rheumatologist who listens.. most important thing and know your body. Sometimes keeping a journal helps me. Good luck and hang in there!

Jmiller46 profile image
Jmiller46 in reply toDeb-h

I was just diagnosed in January but I am pretty sure I have had this for a very long time. I have been in the health care field for 25 years and so I have a healthy distrust of Dr's and meds.

For YEARS I have been my own Dr. Patching up nasty cuts, healed up a brown recluse bite (those things HURT!), dealt with colds, flus, pneumonia, bronchitis. Never went to the Dr. I have dealt with the fatigue (this started when I was pregnant with my daughter 27 years ago), the pain (blamed it on the job) the mental fog (that one I blamed on menopause). Finally I had to quit a job I adored because I couldn't do it correctly with all of these things going on.

In September of last year I caught a flu bug. A rather nasty one and never bounced back. Was feeling worse as time went on. Started losing a lot of weight, I lost 60 lbs in about 4 months, sadly 10 have returned home but I am still ahead right now. I drug myself to work and came home and slept pretty much the rest of the time. My husband finally said you can go to the doc on your own or I will take you. I was sure I had cancer....that is how bad it was. I was figuring out ways to hide the chemo treatments from the extended family.

I got very lucky and found an awesome Dr. He knew within 10 minutes what was wrong. Did bloodwork and sure enough...RA...I actually laughed when he told me. I mean it is really bad...but it isn't cancer bad. My RA level was 539.6 at that time. Couldn't get in to see a rheumatologist until April. Got there and my doc faxed the wrong bloodwork...had to wait two MORE months to go back. I will take my 6th dose of methotrexate Monday. The side effects SUCK. I am dizzy, exhausted, I have lost a few big clumps of hair, BUT, he assures me I will feel better....eventually lol. I think we all just have to dig our heels in and deal with the meds. One of these days some mad scientist may have an AH HA moment and figure it all out, but until then we have things that will keep it from progressing as quickly, and that is something. It isn't a lot. It isn't a cure...but it is SOMETHING :).

Deb-h profile image
Deb-h in reply toJmiller46

Make sure he gives you prescription strength folic acid and leucovorin..... it will help a lot! I take the metho at night and it stopped the queasiness.

Jabmzmom profile image
Jabmzmom in reply toDeb-h

I am on a prescription strength folic acid.

Jmiller46 profile image
Jmiller46 in reply toJabmzmom

Me too. And I also take it at night. Well. I take it before I go to bed. I work nights 3 nights a week and then two day shifts. I take it very early Monday morning then sleep through the worst of it as a rule. I am just always dizzy, queasy and/or throwing up, have had a headache non-stop for about a month. BUT I am trying to have a good attitude and just wait it out lol.

Jmiller46 profile image
Jmiller46 in reply toJmiller46

Oh....and I can't stay awake....unless it is bed time...then I can't sleep. Go figure.

Mia-Giorgi profile image
Mia-Giorgi in reply toJmiller46

Injectable methotrexate helps relieve the side affect of being nauseous. It's been a life saver for me.

jaclyn11305 profile image
jaclyn11305

I was diagnosed in March with seronegative RD im on methotrexate 6 a wk until i get into a rhumy. Im currently in very much pain all over i think Every joint is affected right now for me im hoping my rhumy will get this under control once i get in august 2nd. Welcome sweetie and hope you get the help you need.

sjewell_77 profile image
sjewell_77

Yes I have seronegative rheumatoid arthritis and it's not fun. It's harder to find meds bc most of these meds that go thru clinical trials r for ra patients with a positive rheumatoid factor. I've been on pretty much every med with no success. There is only a small percentage of ra patients whom r seronegative.

tselph profile image
tselph

I also am seronegative RA. I am on MTX & now also Humira along with Celebrex, lucovorin, folic acid, gabapentin & other vitamins.

Sue-Dee profile image
Sue-Dee

I am also seronegative. I take methotrexate, Enbrel and Relafen. Would love to still be on Celebrex, but had an allergic reaction to it. I see my rheumy tomorrow for my quarterly check in and labs. I'm going to ask about a small dose of prednisone for when I travel. That makes my pain level go way up. Hate the prednisone side effects, though.

tennygirl79 profile image
tennygirl79

I am also seronegative RA. I wasn't officially diagnosed until 10 years ago this month because I was negative but I started showing signs in my medical record about 27 years ago. I am on the liquid injection equivalent of 9 pills of MTX a week (after 9 years, this last up in dosage made my body hate the pills so I had to switch). I've run through Enbrel, Humira, Plaquenil, Arava, a bunch of other meds that last one dose and I was too sick on them or had an allergic reaction. I've been on at least 3mg of prednisone every day for the past 10 years. Because I am seronegative and my lab work will show semi-normal inflammation results, I have to do the Vectra DA test every 6 months or so to prove to my rheumy that my disease activity is high even though normal blood work show low or semi-normal levels.

Jabmzmom profile image
Jabmzmom

What do you take for pain? I have been having pain in my wrists and hands. I have been taking over the counter stuff and it justs takes the edge off.

Jmiller46 profile image
Jmiller46 in reply toJabmzmom

My doc has me on 500mg of naproxen twice a day. I still have a lot of pain but the last time I had to stop taking it, for two weeks, for blood work it was horrific. I didn't realize just how much it was helping until then. It is a prescription...not OTC. I am still pretty new to all of this and it is a bit overwhelming learning about all of the meds and blood tests and what they mean lol.

Uneekcheryl profile image
Uneekcheryl

I do, I have handed it for about (diagnosed 9 years ago). I am on these same meds. I take 10 methotrexate, 2 plaquenil a day and folic acid. My current rheumatologist does not believe in prednisone treatment, long term. It has helped a lot with joint pain. Have you had a Vectra test to see where you disease process is at now?

Jabmzmom profile image
Jabmzmom in reply toUneekcheryl

No I havent had a Vectra test yet.

Deb-h profile image
Deb-h

I have at times. But then the Vector C. Test shows major problems. You know your body best. Get into a good Rheumatologist that will listen to you

sjewell_77 profile image
sjewell_77

Yes I have seronegative ra. It's like ra but a negative rheumatoid factor.

JennaB profile image
JennaB

Hi Jabmzmom ...

I was diagnosed in Nov 2015 with seronegative RA. I was Rx'd the same when first diagnosed. The prednisone did WONDERS for my pain. My doctor had me using it to get the flare I was having under control and to allow the other medicines time to start working. I turned out to be allergic to the Plaquenil (Sulfa Drugs) in general. So I continued on the MTX (methotrexate) until Humira was added about 2 months later.

When I was first diagnosed I presented with a very vibrant butterfly mask across my whole face along with lots of other symptoms. The only box that wasn't checked was the RA Factor Positive.

I have what is considered "tightly controlled" RA which I reached after about 7 months of treatment. I wanted to tell you that better days are ahead, its gradual change in a better direction that gets you there. So, hold on, do the best you can and look forward to feeling better.

Remember to rest,

Jenna

Seuroneg36 profile image
Seuroneg36

My husband has just been diagnosed with seronegative autoimmune arthritis. His specialist assured him his caught it early and done no actual damage to the joints. He has prescribed him a two year treatment of methotrexate which he has assured him would give him 97% chance of going into full remission. However research on google doesn’t seem to imply this is the case and I wondered if anyone else has been told this or experienced full remission?

tselph profile image
tselph

Yes, I have seronegative RA also. I’ve had it for about 5 years ago. Right now I’m on methotrexate, plaquenil, sulfasalazine, Savella, & Celebrex. Too many drugs. And that’s not all of them. I also have tried Humira & Enbrel. Humera gave me chronic sinus infections & Enbrel didn’t help at all. I also have fibromyalgia & Sjogrens.

Barbgalvin profile image
Barbgalvin

Hi jab zoom, No, we don’t have the same diagnosis but I do hope that you are on an upswing soon!

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