newbie with questions

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Regular Member

Date Joined Jan 2010
Total Posts : 40
   Posted 1/25/2010 10:59 AM (GMT -6)   
Hey everyone!  I just wanna share some history with you so you might be able to know how to help me or offer your opinion :)  Within the past year I have been diagnosed with RA.  My RA factor is negative.  My ANA is negative.  Most all other tests are negative except an elevated sed rate and CRP and low vitamin D.  I have joint pain and fatigue like something awful.  I'm questioning the RA diagnosis now because I really don't have the classical symptoms of RA like others I have read about.  I have never had a knuckle to swell or have a joint just swell all of the sudden.  I have had a little swelling of my wrists and ankles but its more like fluid.  This all started in 2006 and I felt like I had the flu without the fever.  At that time...the docs thought I had fibromyalgia and treated me as such.  The following year I started having joint I went back to see the doc and my sed rate and CRP were elevated at that time.  He still said fibro and I got a second opinion from the only rheumy here in town and he said fibro too!  Meanwhile what they were giving me was not helping.  I saw another rheumy out of town and he said polyinflammatory arthritis, that is could be RA, lupus, PA, etc.  Prednisone helped immediately.  I felt so great on them!  He also put me on Lodine and that helped too.  I followed up with him every couple of months......then I got the redness on my face.  Its on my nose and spreads on my cheeks.  It doesn't necessary swoop up like a butterfly but it is on my cheekbones and goes down on my face some.  It is not under my nose or chin or forehead.  I was concerned and made a sooner appointment with the rheumy thinking I was developing the malar rash of lupus.  I went there without makeup and he said it was rosacea.  I figure he knew what he was saying so I just left it at that and went on about the RA diagnosis and treatment.   Then a few months later my insurance changed at work and my rheumy doesn't accept the kind of insurance that it changed to.  I was forced to switch to another rheumy which I really did not wanna do.  So, I've seen the new one a couple of times and his NP.  I had an MRI this past Thursday of my wrist and foot.  I have an appointment today and I'm gonna go there without makeup so they can look at the redness of my face.  I have read that rosacea and the malar rash are so similar that even docs are wrong about it sometimes.    My ANA has always been negative and I have had it checked lots of times!  Reading here and on other boards it seems that there are quite of few people who have lupus with a negative ANA.  I guess I will go today and talk to them to see what they say.  My other rheumy had started me on methotrexate saying that it is used to treat both lupus and RA so which ever one I had then it would help....but I'm thinking it would be great to know what I do have and the methotrexate is not helping with my joint pain and fatigure.   My new rheumy believes seronegative RA but I didnt even bring up the rash to him cause I was thinking rosacea like my other rheumy had said.  He had all the records too.    I've looked at the criteria for lupus and list of 11 things.  I have joint pain, fatigue, and this redness but not much else.  I've always had headaches and migraines.   I also have swollen lymph nodes for about 18 years and had one biopsied showing reactive.  BTW, my redness looks almost identical to the pic of the lady on the mayoclinic website.  So, I'm gonna go there today without makeup (yikes) and see what they say and get my MRI results.  Any thoughts you guys have would be appreciated!  :)

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 1/25/2010 4:12 PM (GMT -6)   
I have ana negative lupus and sero negative RA. As long as you are getting treated for the symptoms a dx doesn't matter. Trust me a dx can be bad when it comes to insurance. So until and unless you file for disability worry less about a dx and more about effective treatment. That is not to say that having the correct dx would not be nice but I am just saying sometimes knowing isn't all it's cracked up to be. I would ask about the mtx not helping to see if you could try a different treatment. Are you on plaquenil? it is usually one of the first treatments tried with lupus but takes 6 weeks to 6 months or more for full benifits to show up and because it happens so slowly we often don't realize how much it has been helping until we give up on it. I ask about plaquenil because it can help with fatigue. I also suggest asking about provigil and nuvigil which are both medications to help with fatigue. I really hope your doctor gives you more answers today.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Regular Member

Date Joined Jan 2010
Total Posts : 40
   Posted 1/25/2010 8:10 PM (GMT -6)   
Hey thanks Redrose! I did see the NP today in my rheumy's office and she believes the rash is rosacea and recommends I see a dermatologist. She said since I said spicy foods don't make it worse was one of the reasons? Also, I do have a few little vessels in it like rosacea has. They did run another ANA with the lab they drew we will see what is this time. I guess I will be making an appt with derm now (sigh).....always seems to be one thing or another! THey did add Arava to the mtx....they really believe I have seronegative RA and not lupus. Hopefullly, this will make a difference! If I get anymore news towards lupus I will post here again! Thanks for your reply :)

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 1/25/2010 8:18 PM (GMT -6)   
Just wanted to say welcome to the forum. I hope you get some definitive answers soon. Judy

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 1/29/2010 7:50 PM (GMT -6)   
Hi star, the good thing about seeing a derm is they can do a biopsy and I think it might make ruling things in and out a little easier. Yes it is true that some people never have a possitive ANA it is also true that only 33% of people with lupus ever get the rash on their face. I have small red spots on my cheeks and nose that are always there. for years now. but just this passed month they have shown up on my forehead as well. It's almost just like skin pigmentation. just flush with my skin no rising bumps or anything. The 11 criteria you mentioned is actually considered 4 of 11. but there is no rule that says you will get them all at one time. You could have 3 for 20 years and then get a 4th one just out of the blue. I think the best thing you got going right now is to get a biopsy on your skin. Yes this is one of those diseases that make you want to pull your hair out but if you do you'll just go bauld!
please let us know how you are doing and welcome to the group

systemic sclerosis,scleroderma,sleep apnea, anemia, COPD

 But those who wait on the LORD will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint.

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