Question about Rheumatoid Factor?

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NikiS
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Date Joined Mar 2011
Total Posts : 129
   Posted 4/7/2011 2:23 PM (GMT -6)   
Can anyone tell me what the rheumatoid factor has to do with Lupus? My doctor said mine was pretty elevated and I have swollen lymph nodes all over, a bad rash on  my face and chest, swollen belly (look pregnant), interstitial cystitis, purple spots on different areas of me, my hands and feet (or even arms and legs at times) go completely numb for no reason, have a prickly/tingling feeling in them at times, feel like cold water is running down my arms or legs at times, have some lumps now on top of my head that are oozing some kind of clear fluid (like a knot you might get if you hit your head real hard on something except that I have not had any kind of bump to my head and there are a few knots there), real dizzy at times, vomitting, and sometimes have a ringing in my ears. My toes often look purple and I am extremely tired all the time--I mean severely tired for no reason at all. I can sleep all night and still need to lay down after being up for an hour in the morning! I ache all over real bad in my bones too. My doctor is trying to determine if I have lupus or not but I am wondering if any of you who do have it could help me at all? It is taking so long for this to be diagnosed. He did bloodwork and said I had too high a rheumatoid factor. He did x-rays of all my joints and is seeing arthritic condition in there (I forget what word he used). He said my back is scoliosis. The ultrasounds of all my lymph nodes showed a lot of swollen nodes all around my neck and behind my ears area as well as linginal and groin area and they said there are some in my abdomen where there shouldn't be lymph nodes at all?!  He said it definitely looks like an autoimmune situation but wants to determine exactly what it is (which I am so grateful that he is trying to finally get a true diagnosis on the condition as I have been in extremely severe pain for a long time now), The pelvic pain that is the worst pain is from the interstitial cystitis and I am being treated for that--so although it could take a few months to get relief from that, they said I eventually will. But the other symptoms outside of the bladder symptoms (frequency, etc) that I am having they said are not from the IC and something else is going on. Anyways, he is going to send me to a rheumatologist and supposed to call me this afternoon with the appointment but warned me it could be a few months before I could get in!!!! (which by then I bet a lot of these symptoms will be gone because the last episode I had, by the time I got to the specialist that time they had gone and I felt stupid seeing the doctor and told him I was fine at that point!) But I did not know that I had an episodic condition at that point and just assumed whatever it was had gone away and that I didn't need to see the doctor anymore! But it keeps coming back worse and worse and I just can't deal with it too much longer. I need to know what is wrong so I can figure out what I can do about it. By the way, the only thing that has given me any true relief from the symptoms within just a few hours has been corticosteroids (as long as they were at a high enough dose). I don't know why and the doctors don't either.  Any thoughts anyone? I would be so grateful!!!!

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 4/7/2011 3:02 PM (GMT -6)   
The rheumotolgist is the right Dr to determine if you have RA, Lupus, both, neither, or something else altogether. It sounds like your doctors have waited too long to send you to the rheumy when so many of your symptoms point toward and auto-immune disease which they are not the best qualified to deal with.

As for your question, what does RA have to do with Lupus -- nothing. Of course, some people may have an overlap but I've not yet seen anything (since 2002) indicating that either influences the possibility of the other.

Take note of all your symptoms, when they start, when they stop, and everything in between. Lupus is diagnosed by having 4 of 11 symptoms, there is NOT a single test that confirms or denies Lupus. RA, on the other hand, I'm pretty sure there is a definitive blood test.

I would go ahead and take the cortiosteroids (there is no reason to suffer if you don't have to) but make sure you note all your conditions as they relate to what you are doing with meds, with sleep, with food, with exercise, with sun exposure, in general, note the general circumstances of life when the symptoms arise/exist. The more info you have the better job the rheumy can do.

Dunno where you are, but try to see the rheumy sooner than a few months!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/7/2011 3:32 PM (GMT -6)   
Thank you Lynnwood! I did not realize that I couldn't ask about something in more than one thread--apologies--I am new to this. Is RA the same as a rheumatoid factor? My doctor said it was a nonspecific test that looks for any type of inflammation in the bloodwork which can be indicative of any autoimmune disease...?  Thank you for all your help and tips. I will keep track of it all and I am sure trying to get in to see a rheumatologist sooner if possible! I need some answers and trying to keep up with school and a 15 month old is not easy right now!

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 4/7/2011 4:10 PM (GMT -6)   
Here is the helpful answer direct from labtestsonline - they have pretty good explanations of about any test your drs can dream up!

www.labtestsonline.org/understanding/analytes/rheumatoid/test.html
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

tfofd
Regular Member


Date Joined Apr 2011
Total Posts : 56
   Posted 4/7/2011 4:35 PM (GMT -6)   
I have IC. I've had multiple organ prolapses that caused pressure, pain, hydronephrosis, stress incontinence, burning, frequency (extreme at times, try 30 to over 100 times a day), urgency, all that fun stuff. They blamed it on the IC but my bladder inflammation doesn't flare like that. Surgeries helped but now I am having neuropathic pain in my pelvic area so I have the pressure, frequency, when I lay down in bed, and incontinence from time to time. My bladder has taken an odd shape during filling. I think it might be neurogenic. I took elmiron and overactive bladder medications for a long time, I did not respond to them at all. Hopefully your medication will help you, but if you find after a while it doesn't do anything or the hydrodistension's don't seem to make a difference, I'd have the issue looked into further. The medication they injected me in the office gave me a little relief from the burning and irritation I've felt in the past, but that was as good as it got for me. Hydro's always gave me UTI's.

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/7/2011 5:01 PM (GMT -6)   
Thank you Lynnwood for the link to the lab tests! That answered a lot of my questions because my doctor really didn't explain it at all except to say that it was high. Also, the rheumatologist had said that he wanted bloodwork to be done by my family doctor before he would see me and that he was looking for the RF...so that is why I was wondering what it signified. (He also said he was looking for the ANA test). Mine I believe was negative. If it is negative, does that mean you don't have to worry about SLE at all? I am sorry to ask so many questions!

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 4/7/2011 5:34 PM (GMT -6)   
Lupus is diagnosed by having "4 of 11" symptoms. Unfortunately there is no definitive lab test or symptom that totally says YES or NO to to the SLE question. Check out more about lupus at tinyurl.com/HW-LUPUS.

You can have Lupus with a positive or a negative ANA. You can have a positive ANA and not lupus, but possibly another auto-immune disease of some type. Sounds like for now you just have to get your labs done & wait for the results.

Hope you feel better soon!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Post Edited (Lynnwood) : 4/7/2011 4:50:37 PM (GMT-6)


NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/7/2011 6:06 PM (GMT -6)   
Thank you so much Lynnwood for taking so much time to help me. I am trying to stay positive and this has been going on for almost a year and a half now with test after test and surgeries and procedures and I guess I feel like they are finally close to figuring it all out finally but just wonder how much longer one has to wait before they can start treating whatever it is so I can get better. I know I am not the only one in this boat either. I wish it were not this way for so many of us... one's life seems to slowly come to a crawl after a while and just waiting for resolution...  It really means a lot to me that you answered so many of my questions!!!  Thank you!

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/8/2011 11:11 AM (GMT -6)   
Well... the fam doctor office called today and said the soonest I can see a rheumatologist is November! My insurance won't  cover some other group that could have seen me in July or Aug... either way--both are an eternity away as sick as I have been and I totally give up!!!  I don't know what to do anymore and just can't deal with this. I don't understand why the doctors cannot do more--why they keep sending me from one to another to another and NONE of them takes responsibility to relieve any of the severe symptoms I am having. I am in so much pain and in bed--and I have always been running around, building houses, climbing ladders, in college--extremely active--and I can't get out of bed the past couple days. THIS IS INSANE... I am sorry to be so negative and I don't blame you if you don't want to talk to me anymore... but I am ready to give up. I can't deal with this pain any more.

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 4/8/2011 11:33 AM (GMT -6)   
NikiS,

Are you in the US? Are there other rheumies in the area that your insurance will cover? Usually Drs don't get into the limits of your insurance, and it may not be a rheumy that your Dr recommends -- but that may just mean the Drs haven't met yet!

I'd go straight to the insurance company and see what rheumies are available to you in your area.

And if there aren't any try the public hospital and see if there are any programs for the uninsured that might help? Dunno - I'll post if I think of anything else.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/8/2011 11:50 AM (GMT -6)   
Thank you Lynnwood. I am on an insurance that runs through GA medicaid. So the doctor's office said the issue was that none of them take my insurance. During open enrollment a few weeks ago I changed to one of their other optional insurances through medicaid (there are 3 total to choose from) which more doctors participate in but it won't be useable until May 1st. So they said they are not even going to schedule anything until the insurance changes over because they need the new number for me to schedule it! They said no one will see me before then either way because they are too booked.... My husband said he will take me to another state if he has to if it will help. He has been SO supportive and the only thing keeping me going (and my children!) If it weren't for his belief in me and understanding I think I would go mad from these doctor's uncompassionate and uncaring manners.... I wonder what they would do if I were their sister, mother, wife, or daughter? I don't think doctors look at it that way! Thank you again Lynnwood!!!! You give me a lot of courage when I feel really down!

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 4/8/2011 12:08 PM (GMT -6)   
If your insurance is thru GA medicaid I doubt going to another state will help. But maybe calling and seeing if you can get the new number in advance will help?
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/8/2011 3:32 PM (GMT -6)   
Thank you! I'll try that and let you know. I really appreciate  you!

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 4/8/2011 3:37 PM (GMT -6)   
Thanks, Gina.

Sometimes it feels like I'm posting into an abyss! But I've finally decided that is because many people don't bother to read the whole thread, they just read the first post then say whatever....(pretty weird when they end up posting answers or questions to something that was posted 3 or 4 years ago and the poster has long ago disappeared)...I don't take that kind of thing personally anymore.

But it's always nice to have a pat on the back!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/8/2011 4:46 PM (GMT -6)   
Well, I really appreciate you (this is Nicki by the way)! You have been a tremendous help and comfort to me over the past couple days where I don't know what I would have done if I had not been able to turn to you for help. I know we have not "met" as such, yet I feel like you are a guardian angel out there just making sure that we don't give up hope! I hope you never feel like you are not noticed--because I can't tell you how much you have meant to me although I am very new to all this and to this forum. Thank you again!!!  Nicki
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