I have RA but sometimes I think I may have LUPUS

Hey my name is BabZ

 

Ive been battling Ra for quite some time, to give you guys & gals the skinny, its took me a million Drs, to get a Diagnosis...LOL and basically it was a crossed between Lupus & Ra, My ANA is Negative, But my blood work always has a positive Rhumatoid Factor

 

when my Rhuemy first diagnosed me with Ra, I baiscally had all the symptoms that a person with Ra had, but as time went by, and even with all the meds I take...Ive developed new symptoms, and my fatique sometimes feels as though its getting worse

 

The past 8-10 months or soo, Ive notice hair loss, and thinning....My Cheeks, ears and sometimes my chest gets burning hot, and red...and I also notice that when I get a Flare up, I get red lines in between my knuckles of my hands, which could be the RA...but is it possible that I may have Lupus too... besides RA, I also have Raynauds Phenomon, & ereythema Nodosum on my lower leg chin area...& also have Gerds....

 

Ive told my Rhuemy, that ive notice that Im losing hair, and lately the ends of my hair dry out alot quickly...but he just nods his head, documents it on my chart and tells me to take my meds, and its all part of the Ra...Dont get me wrong, he is a wonderful doctor, and out of all the drs, I have seen, he was the only one to find out there was something wrong with me, and he was the only dr that knew i wasnt crazy, but sometimes I get the feeling that i may have something else wrong with me....

 

sorry for venting I guess im venting beucase im starting up another Flare up....and im really dreaded taking any meds right now, so on that note let me go take my meds and get some rest....

 

hope you all have a good night

Best regards,

BabZ

Babz...
Frustrated is how you feel when you have all these symptoms. Not to talk about the fact that your whole body is probably screaming and telling you that there is something more going on. And you know what? I bet there is. It's just that it isn't showing on your bloodtests yet or the right tests haven't been done. All you can do is make sure they take the right ones and that you read up on what your body is telling you. If you find another solution, then you get a the bloodwork done.

Keep your chin up, and vent when you need to. Next time I might need a vent and maybe you might listen :)

Hugs and good luck!

Hi Babz,

 

I noticed your post and thought I should put in my 2 cents!  I'm from the lupus forum.  You can definitely have lupus with a negative ANA.  More and more now, people are being diagnosed with lupus who have a negative ANA.  It isn't the end all be all of criteria anymore.  I'd definitely get a second or even a third opinion about this.  If it is lupus the sooner you can get treatment the better.

 

The fact that you have Raynaud's is a big red flag for lupus.  What meds are you on right now for your RA?  Prednisone?  Immune suppressants?

 

Be proactive about this.  Pop into the lupus room any time if you have questions okay!

 

Ginny

hey its babz, I just wanted to thank everyone for there helpful advice and support...its nice to know that your not alone in all this....

I am going to get a second opionion, im just going to have to put more effort on my part to research a dr in my local area...

The Meds i take are,
Sulfasalizine 500mg 2x a day
Diflinsal 500mg 2x a day
Plaquelnil 2x a day
Colchicine twice a day
Enbrel injections once to twice a week, but now its only once a week becuase it compromises my immune system so much that i get sick & fevers and all that wonderful stuff that goes along with it...LOL

Vicondins 750mg when all above fails
and last but not least Celebrex when I dont want to take vicodins, beucase Vicondins are soo darn addicting

and to balance out all this crap, I take Prevacid to neutralize the acid

in addition I am supposed to take Folic acid, Vitamin B complex, Childrens Tylenol, which i dont beucase I just cant take all these pills on a daily basis...

as far as blood work an all I do blood & urine anaylis on a monlthy basis, which reminds me im actually do for another series of test...lol

today I actually overslept, I woke up at 230pm....I guess I needed the sleep...

I will keep everyone posted once I find a new reumy to get my 2nd opinion....

hope everyone has a great night and thanks again for all the support...

ttyl
BabZ

Hi.  I have a similar situation as  you.  I've always tested positive for rheumatoid factor, but negative for ANA.  I have an official dx of RA, not SLE.  And I will NOT be dx with SLE unless my ANA shows positive, along with the antibodies that are specific for SLE.   My rheumy simply refers to it as my possibly developing rhupus ( a crossover between RA and Lupus, or  possibly the beginning of MCTD--with MCTD, you never test positive for the specific lupus antibodies, but will eventually develop RNP antibodies--something like that).  It simply requires monitoring; tx is similar for both, but there are certain RA drugs that may work better for SLE and vice versa.  For example, plaquenil is the mainstay of tx for SLE, but it is also used for RA.  I do take plaquenil  in addition to some other DMARDs.  I may never fully develop SLE, but I'm "on notice" for it, and I'm kind of being treated for it anyway.  My rheumy often reminds me that it is more important to be treated for the actual sx, than to have a diagnostic label.  He's fully aware of my past reactions to certain drugs (i.e., sulfasalazine), which can be indicative of SLE, so he simply avoids prescribing anything that can potentially aggravate SLE type sx. 

Elcamino

To Elcamino, just curious Does the UltraCets help you at all....because in the past, I did take ultrcets for the pain, and they worked at first, then i got sick from them, then after a while i was able to take them, until i started to increase the ultracets, to the point they were like taking candy...do you find that taking ultracets help you better than taking Vicodins....?

Hi Babz,

The ultracet is better than nothing.  I didn't want to move on to a narcotic, like vicodin, although I've had days where it's been tempting.  Rheumy has never offered a narcotic, and I don't think he would unless I brought it up first.  I simpy stayed with the ultracet and prayed that the enbrel and mtx would kick in.  If I have a day that's really bad, I just deal with it.  I haven't had debilitating pain for a long time.  Now that the enbrel and mtx have kicked in, my bad days are getting less and less, although when the enbrel injection wears off towards the end of the week, I feel like I could take a few more ultracet.  My insurance gives me a hard time about taking the few ultracet I currently take (I only take 4/day--rheumy prescribed 6/day).  I choose not to push the envelope.

Lori,

Both the RF and ANA are implicated in several different autoimmune diseases, and both can be found with RA.  You only need to be positive for  RF to get a dx of RA (in addition to the overall clinical picture), and many normal and healthy people have a positive ANA--especially low positive.  Many healthy people also have a positive RF, but usually they are elderly people.  My rheumy told me he doesn't typically test for the more specific ANA antibodies, like RNP, the DSNA, etc.... unless the overall ANA is positive.  He did test me for anti-jo antibodies without a positive ANA, but predicted it would be negative.  He was right.  In any case, I wouldn't hang your hat on any specific labs--labs come back positive and then negative later all of the time.  It is very confusing.  Any rheumy worth his/her salary is not going to depend on just labs, but will take into account the whole picture.  It sounds like your rheumy is doing that--he's aware of the pleurisy, pericarditis, and vasculitis. 

What was your issue with the mtx?  If it was nausea, I understand that it is available in injection form so it will bypass your stomach.  I've noticed that I have no appetite for a few days after taking the mtx, and I'm only taking the starting dose right now--7.5 mg/week.  I'm sure rheumy  is going to increase it.  If i start getting terribly nauseous, I'll ask about the injections.  I've been sick a lot since on the enbrel as well.  I suppose if infections turn into chronic conditions I will probably have to stop taking it.  So far, though, my infections have been self-limiting (except for my current sinus infection) and have resolved with antibiotics.  You definitely don't want to take any of the biologics with a heart condition.  Are you seeing a cardiologist for that?  It's possible that you could be developing SLE, but it could be a case where you never fully develop it.  These diseases often take a long time to fully evolve.  I still think it's more important to take care of the sx and get your pain under control.  Can you take NSAIDS at all?   i suppose many of us cannot tolerate them.  Perhaps you should consider getting a bit more assertive with your rheumy and ask for something more.  Narcotics, though, will not help you in the long run; they do nothing for inflammation.

I hope you feel better soon,

Elcamino

Thanks Elcamino,
With the mtx I was having, Swollen glands, Sore dry throat, Burning in the esophagous, Sores in my mouth and nose, Very nausious, Severe constipation, burning skin.. . Yes the Enbrel is where and when I really started to get sick..with those nose infections...they were actually on the skin inside my nose but they got so big and infected. So if I start to get infections again then we know where it's coming from. See that's the hole thing I have been having so many issues that are keeping me from being able to get treatment even started...It's very frustrating, but I do need to be careful too..I don't want to die from these meds. He won't start me on the enbrel until he knows what is really happening to my heart..as far as we know and the only thing is my heart is sluggish..I have to wait until Monday to get those results. I am seeing a cardiologist and she told me that a very big part of the heart muscle is not able to move at all...so to me that's scary. I'm thinking OK. heart failure???? She actually gave me a booklet on it and it was about heart failure. But I'm sure if it was very serious they would have not let me go home last wednesday after the coronary cath. I am taking Mobic 15mg once a day..I guess I'm tolerating it, but I sure have been so constipated, swollen stomach on my right side..that's a whole other issue I need to bring up. As far as the pain meds they do help me. I also have Fibro and my muscles ache so bad and I have some damage to my neck from two car accidents..so I'm in constant pain in my neck, shoulders and upper back. 24/7. He's tapering me off the steroids. I have been on them for a year now. Tomorrow I will be down to my regular 15mg a day. Then every two weeks I'll cut down another 1/2 until my next visit. I think he wants to see whats going to happen. Gosh I really appreciate your input. It's nice to know that your not the only one out there..and I think I have it bad..I read some of these other people's post's and I cry. And realize how fortunate I really am.

Erin,
I'm am so sorry that that happened to you. That's what scares me. How did they treat your RA with your heart problems? See I had the vasculitis in the arterie, they thought they were going to have to put in a stent, but thankfully it went away. Now I'm dealing with this heart thing. It's been a few months. I have this cough that doesn't want to leave. And there's phlem. (spelling)I think I better let my Rheumy know..Im calling him tomorrow. I'll feel you in on monday....
thanks,
Lori

Thanks Downupside,

its funny the other day, i was looking at pics of me when i was younger and i was like wow, I use to have alot of hair...LOL

Thank god my hair is wavy/curly, soo I guess in that sense it doesnt look as bad, but i know what i used to have on my head..LOL

maybe the next rhuemy I see, should be a female, only becuase I think females have a tendency to care more about hair....LOL

anyhoot....thanks 4 replying & listening

ttyl
BabZ

Hi everyone,

 

I thought I'd chime in here again. Seems like a popular subject that we're on.  Vasculitis, Pleurisy, pericarditis screams lupus.  Your ANA of 1:80 is a low positive, but there have been many people diagnosed with lupus who have a negative ANA or a positive 1:40.  It does take time to accumulate all the necessary symptoms to warrant a lupus diagnosis.  but the fact that you have RA, you had vasculitis, pleurisy, pericarditis, and you just feel poopy all the time really makes me think that you need more input from your rheumy and another opinion. 

 

Also, a basic CBC blood test to see what your hemoglobin, lymphocytes, neutrophils, liver and kidney functions are doing right now.  Those can tell a big story.

 

I have Libman Sach's Endocarditis.  Which is inflammation of the mitral heart valve.  Quite common in lupus.  I get an echocardiogram done every year.  That is another indicator of lupus. 

 

Get all the tests done.  All of them...Ask for a full lupus blood pannel.  And like the others have said, make sure you're getting treatment for the symptoms, not necessarily the disease or lack of one!  If you need to be on prednisone full time to combat any future vasculitis or pleurisy or damage to your joints and organs, then DON'T taper off of the prednisone.   If you do start a taper, make sure you keep track of how you feel from day to day.  Keeping a detailed diary of your daily symptoms, even the small ones, is major.  It will help your rheumy to come to a conclusion on what you are dealing with.

 

That is advice that I highly recommend.  It helped to save my life.... Lupus is dangerous if not treated properly and quickly.  Also, do your own research on lupus.  And, pop into the forum to talk to us.  We are a great bunch with a lot to share!

 

God bless,

 

Ginny

You're welcome Lori,  I wish I could help more!

 

Well, as long as your doctor does this taper down carefully. I'm sure you're in great hands and all will be fine.  You're probably right about him wanting to see you without the prednisone covering anything up. I hope it all goes well for you!

 

I'm glad you're keeping a diary!  That will help you out sooo much!

 

God bless,

Ginny