Hi, newbie here-possible Seronegative RA-confused?

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moggy914
Regular Member


Date Joined Jan 2010
Total Posts : 64
   Posted 1/19/2010 10:03 AM (GMT -7)   
Hello everyone! I'm new here and a bit confused because my rheumy told me that I may have an RA that doesn't show up on bloodtests, but then how do they diagnose it properly?
  Anyway, here's my history: I have struggles with depression/anxiety all my life and am taking meds for them. I was dx'ed with hypothyroidism over 10 years ago and am taking medication for that-interestingly I am allergic to one of the fillers in Synthroid and cannot take that med! I also have high blood pressure and was dx'ed with fibromyalgia about 3 years ago. I take Lyrica and it is helpful. I tried Cymbalta, but after a couple months it started to make me really agitated. It seems like all the SNRI meds make me feel agitated and like I just hit a blood sugar low!
  In July of last year, my finger joints started to really bother me. It got so bad that it hurt to do things like click on the computer mouse and such. I was gearing up to go back to my rheumy, and in August I fell down the stairs and broke my left wrist. I had to have a permanent plate put in one bone and a pin in the other, and I was on Percocet and Oxycontin while I was healing from that. I was not having any problems with fibro pain while I was taking those meds!
  In about Nov. or Dec. I started to have pain all over, fingers, toes, elbows, knees, hips, escpecially thumbs, it was terrible. The pain in my fingers was especially bad, whenever I did anything, like peel vegetables for dinner, later I would be in terrible pain. I had trouble making Christmas cookies with my kids and trying to ice my daughter's birthday cake because I could  not squeeze the tube of icing. I also have had loss of strength in both hands but I don't know if that is related to my broken wrist. I have had some swelling in a couple joints but only once or twice. The pain was affecting my daily living and I was feeling awful all the time.
  I went back to my rheum. a couple of weeks ago and she said that it sounded like RA. She thinks that I could have RA "Simmering in the background" but now she said it could be a type that doesn't show up on bloodtests. I have been tested for RA, Lyme, Lupus, and Sjoegrens and they are all negative. Then she mentioned seronegative, and I looked that up on the internet and it seems like there are some tests for that. She put me on a course of Prednisone, for 10 mg for a week and then 5 mg the next week. I am stopping it today. It was amazing- I had next to no pain while I was taking the 10 mg and I had energy! She said that how I reacted to the pred would signify what we needed to do next and that if it was seronegative RA that I should try Plaquenil.
  My question is, if it is how do they diagnose RA if it doesn't show up on a bloodtest? I'm nervous about trying something like Plaquenil but I know Prednisone isn't good to stay on. Does anyone else have seronegative RA? Sorry this post is so long and rambling, I am just very confused! Thanks!

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 1/19/2010 10:31 PM (GMT -7)   

Hi Moggy and welcome to HW and the RA forumsmilewinkgrin

The other way of testing for RA are scans and xrays but if your Rheumy is certain from your symptoms alone I guess thats confirmation enough.

Isnt prednisone great:-)  its a shame we cant stay on it long term.

I havent used Plaquenil, I hope someone comes along to ease your mind about taking it. Im all for taking anything that will give me quality of life.

Please keep posting on how you are going, there are some very knowlegable and compassionate people on here who are only to willing to help.

Take care.

Jo


Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 1/20/2010 6:42 PM (GMT -7)   
Yes, it is possible to be sero-negative for RA.  I was diagnosed based on symptoms alone and have tried just about every RA med possible.  The plaquenil is wonderful and goes a long way in helping toward the low energy level and pain that can come along with the RA.  I took it for a little over a year and along with Enbrel and MTX is was my magic cocktail and I was even going to the gym once again.
 
If you decide on the Plaquenil, please get your baseline eye exam before you begin your script and then get regular eye check ups.  While the chance is small that Plaquenil can cause eye damage, I was one of the few and had to discontinue the Plaquenil.  I've yet to find any combination that works as well.  Although, yes pred is a wonder!! and on that I've been pain free and energetic, however it isn't good for the body and my rheumy doles it out sparringly.
 
Good luck to you!

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 1/21/2010 1:55 AM (GMT -7)   
Hi and Welcome, I was diagnosed with RA with blood test and X-rays.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on and Humira. B-12 injection once a month.
Also diagnosed with Rheumatoid Arthritis.


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 1/21/2010 1:47 PM (GMT -7)   
I was diagnosed 3 years ago with sero negative arthritis. Mainly from my symptoms not resoving with normal anti inflammatories. Put on sulphasolasine and so the roundabout began. My rheumy also took xrays. I've been upgraded to RA status over the years as my inflammatory factors went through the roof but I don't have the genetic markers. I just hope that means I can't pass this on to my kids.

So take the plaquenil and wait and see if it gives you some relief. You don't want to be left with permanent disability. Meanwhile put yourself on fish oil and glucosimine, if you want to try a non med way of helping. I'm about to try tumeric! My alternative doc reccomended.

Goodluck and let us know how you go, golitho

moggy914
Regular Member


Date Joined Jan 2010
Total Posts : 64
   Posted 1/21/2010 7:05 PM (GMT -7)   
Thanks for the replies! One thing I am uncertain of is why my doc isn't doing x-rays, but as a couple of you mentioned, maybe she's just certain based on the rest of the symptoms.
  I really loved being on the prednisone because it was the first time in a long time that I had almost no pain! I guess I will try the plaquenil and see how that does. Interestingly, I am allergic to sulfa so I can't do the sulfasalazine. Well, my rheumy said, "We can try it if you want." and I said No thank you! I am allergic to a few different meds and the reaction I had to Sulfa was the worst yet (rash all over, swollen face and eyes, vomiting, fever).

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 1/22/2010 8:48 AM (GMT -7)   
Good luck with the Plaquenil, it really helped me when I was on it! Especially with the fatigue that comes with RA.  I do understand about the pred, as it can make me pain free, I wish I could take it everyday!!

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 1/23/2010 1:46 AM (GMT -7)   
Good luck and let us know how the Plaquenil works for you.
Jo
Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


capri69
New Member


Date Joined Feb 2010
Total Posts : 2
   Posted 2/1/2010 1:38 PM (GMT -7)   
Hi Moggy914 --

I'm new too!

Your story sounds very similar to mine. I have had several blood tests which have all been negative for the Rheumatoid factor. However, over the past 6 or 7 years, I periodically had joint/synovitis/tendonitis problems. I always went to a orthopedic doctor-- slways tried numerous treatments only to finally result in a surgery. I've had 3 trigger fingers, carpal tunnel, ulnar nerve entrapment (2x), de Quervains tendintitis, AC joint decompression and clavicle resection on my right shoulder. When my left shoulder started bothering me (both AC and SC) joints and the right began having problems again, I started to suspect that there had to be something systemic going on. I was told it was probably tendonitis or osteoarthritis but I'm not overusing anything and it seemed I was too young to be in that much pain from osteo.

Anyway, the shoulder pain was awful. I had neck spasms, back spasms -- all kinds of muscular stiffness as a result of the painful joints in my shoudlers. This went on for a year or so. Then in October, my hands started bothering me --just a few fingers -- they felt swollen, although only one of my thumbs actually appears swollen. In a matter of weeks, all my fingers were affected. Then, my left wrist started. And strangely enough, my ribs hurt.

By the way, I was amazed at how fast I lost strength in my hands - more on the left than the right. In fact, all the symptoms seem to be worse on my left side.

Finally went to a Rheumatologist and she suspected RA - although blood tests were normal. We tried Prednisone as a diagnostic tool. If I saw results, then we would treat is as seronegative and go from there. I went on Prednisone for 2 weeks and all the pain vanished (except for some achiness in the shoulders). As soon as I tapered to 5mg/day all the symptoms came back.

Saw my rheumy today and I'll be starting Plaquenil. I've been researching it and it seems to have little side effects unless you're on very high does for a long time. Prednisone has some nasty side effects, so its generally not something you want to be on all the time. I'm a Type 1 diabetic; steroidal meds make my blood sugars uncontrollable. Often, even non-diabetics become diabetic after taking pred. for awhile.

The retina issues associated with Plaquenil concern me as a diabetic who's had retinopathy. My doctor said the dosage I will be taking should not cause damage. I'll be monitoring my eyes closely.

Although, you're seronegative (correct me if I'm wrong) the goal is to knock out the inflammation and whatever immune response is causing it. Constant inflammation in the joints not only causes pain but wears away the joint. I have also read that seronegative is often a milder form of RA.

I'm also wondering if there any Type 1 diabetics (for 31 years) out there who have RA issues. I think I'll start a new thread.

star73
Regular Member


Date Joined Jan 2010
Total Posts : 40
   Posted 2/1/2010 3:10 PM (GMT -7)   
I have seronegative RA too. My inflammation blood tests are elevated (sed rate and CRP). My RA factor has always been negative. Anti-CCP is also negative. Some of us just dont produce the antibodies for these tests but that doesnt mean our RA is any different. I hope both of you (moggy and capri) get started on some meds that help!

moggy914
Regular Member


Date Joined Jan 2010
Total Posts : 64
   Posted 2/2/2010 6:27 PM (GMT -7)   
Hi- thanks again for the replies. I see my rheumy in a couple days and I guess I'll be starting Plaquenil. I have been off of Pred. for a couple days just so I can tell her how crappy I feel without it. Yuck, I hate how draggy I feel! I wish Pred. didn't have such nasty side effects!
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