Positive Rheumatoid Factor

janyj
  • By janyj · September 19, 2012 at 10:21 pm · 14 replies
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Hey everyone! I've never been officially diagnosed with sarc. Currently my doctors say that I definitely have Chronic Fatigue Syndrome, but today I found out that my rheumatoid factor was positive. It was on the low end of the scale but positive none the less.

I have neuropathy, sed rate consistently between 40-60, three slightly elevated ACE tests, swollen glands in my neck, chest and groin, headaches and fatigue. I get chest x-rays and CTs but they never confirm sarc, although they are abnormal with "old lesions", just not in the sarc fashion so I'm told.

Nothing definitive.....now this elevated rheumatoid factor. Any ideas?

Thanks friends!
Janis

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14 replies   

dinny51

Hi Janis,
I found out from my sarcoid doc in Detroit that about 85% of her patients have had mononucleosis and/or fibromyalgia prior to being diagnosed with sarcoidosis. All of these diseases, including rheumatoid arthritis, are auto immune. If "old" lymph nodes are noted, are there any close enough to biopsy? This is a major procedure - I had one, but worth it to have a positive diagnosis. Have they ruled out lupus? There are several tests, including the sed rate, that now make lupus easier to diagnose (one is the anti-antigen DNA). And finally, has anyone considered lymphoma? One other thing - are you diabetic?

There is an excellent article on sarcoidosis at www.stopsarcoidosis.com In the years of research that I have done, this article was one of the best. It almost sounds like you have mild cases of both.

Look, do extensive research on all of these disease processes, take notes in with you and questions for your doctors.
be gentle but firm with your physicians in your need to be involved in your case. Not knowing is obviously bothering you, and
get them moving to turn everything over to find out what is wrong. It's scary but will bring you piece of mind.

I"m a retired nurse and have worked diligently on managing my own disease, which is quite complicated. I look at each day as new with a new adventure around the corner! Best prayers for you!
Dinny

I wish you good luck and lots of prayers
let me know

janyj

Dinny,

Thank you so much. I've sort of been going along in limbo land accepting the Chronic Fatigue diagnosis until this positive RF result. With this lab, a positive is 14 or greater and I was 14. A year ago, same lab, the RF was 10. I don't know what this means. ANA & other antibody tests are negative. Gland swelling continues to get worse, especially in my chest, under my arms and above each breast. Several years ago my parotid was biopsied to look for sarc but it showed nothing. I've also had a salivary biopsy for sjogrens and it was negative. Should I insist on a biopsy of these glands that are currently swelling?

Here is my current status:
Slightly elevated RF
Autonomic neuropathy (ruled out all causes such as diabetes, HIV, etc)
Consistently elevated sed rate (between 40-60)
Swollen lymph glands(painful, can't lift arms at times)
Fatigue
White matter brain lesions (neurologist says it is not MS)
Elevated ACE (only slightly elevated)
Positive Epstein Barr
CRP consistently normal
Negative antibody tests including ANA
Mild sob but no cough
X-rays negative for RA (I do have swelling & arthralgia)
CXR shows splattered lesions (old histoplasmosis although blood test negative for evidence of histoplasmosis)
Negative TB
Negative Lyme
No fever or weight loss ever

That's about it in a nutshell. I will read that article. Appreciate any further thoughts/advice!
JJ

Tawney

I've had low elevated ANA results before. My personal guess in making sense of things is that low level ACE, RF, ANA and such are just inflammatory markers indicating something is in play. ACE can elevate in connective tissue disease, and ANA and RF can sometimes elevate now and then in sarc.

Can anything be biopsied from the swollen glands you have?

janyj

Thanks, Tawney. I've had the parotid gland biopsied but it showed nothing. There is a knot on the back of my neck that has been viewed on scans as being related to "autoimmune phenomenon" and I think it should be biopsied. Im told the problem is that it's deep, and on a muscle and would be difficult to reach. All of my migraine headaches start at that knot. It's painful and hard. But no one has ever suggested any of the other glands for biopsy. I might have to insist.

Thank you for your reply. I hope you are doing well.

dinny51

Hi to both of you, Janyj and Tawney,
Well, I totally agree with you Tawney. Those lymph nodes are suggestive of something going on - and what about the glands under your arm - one arm or both? Are they hard too?
Ok, couple of suggestions - have you seen an endocronologist, a neurologist, even an ENT? Perhaps a rheumatologist? I was lucky enough to have my family practitioner with me with original specialists (I was in the hospital). They're all saying I had lymphoma, but my doc said he thought it was sarcoidosis and he was correct
How 'bout bloodwork - a monospot for mononucleosis? How about Epstein-Barr virus (there are several titers in blood tests related to this. Is it possible that this is a muscle? Have you tried having several sessions of massage? Are these true migraines or perhaps another type?
I sure don't mean to ask so many questions, but I've heard so many horror stories about the troubles of getting diagnosed and I was so fortunate, well, just trying to help.

janyj

I have a high Epstein-Barr titer. Yes, I have seen two ENTs, one did the salivary biopsy, the other the parotid biopsy. Those biopsies showed nothing. The glands under my arms and above my breasts are more like masses. They flare up for a few weeks at a time and then I don't notice them for a week or so.
I have seen three different rheumatologists. They all had totally different opinions. The first one told me I had lupus but none of my antibody tests were positive. I went for a second opinion and he said I have urticaria/arthralgia syndrome (whatever that is) because I have rashes. Went for a third opinion and she sort of empathized with all my symptoms and sent me on my way. Her last statement to me was, "I know it's not normal to have all these symptoms like swollen glands, swollen joints, difficultly breathing. I wish there was something I could do for you." It has been crazy!
My neurologist confirmed the autonomic neuropathy and white matter lesions but assures me it is not MS.

I have never seen an endocrinologist.

It's been difficult. I can sum it up this way....I have something autoimmune. My symptoms fit a number of diseases together and individually. My positive tests do not confirm or rule out anything. The cause is unknown. Treatment isn't an option because the disease can't be identified. Eeeeeek going on six years without a diagnosis.

Thank you so much for your thoughts!!! I really appreciate it. Let me know if you think of anything else. I take everything to heart and value what I learn from others on this site.

janyj

Oh, and I meant to add that the swollen glands in my chest were confirmed by a radiologist and ultrasound. It's definitely swollen glands. And the swollen glands (submandibular and parotid) are visible. I look like I have the mumps. They also get rashes on them. It's weird.

dinny51

Hi Janyj,
If I come across anything in my research travels, I'll let you know. Keep in touch and I will too!
Dinny

janyj

Awe thank you Dinny! I sure appreciate it.

COalmostNative

Sarcoidosis is not an autoimmune disease, but is an inflammatory disease. Most autoimmune diseases have markers found through blood tests; chronic fatigue and firomyalgia do not as they are also inflammatory in nature.

There is a good, informative pamphlet on this site- a good place to start. Sarc is definitively diagnosed through a biopsy, and lymph nodes are the easiest. A PT/CT scan will show abnormal cell activity, identifying nodes to biopsy. I had one below my sternum remoed in 2002, and it was full of granulomas- classic sarc. My ACE and other related blood tests have always been normal...

Although the list is a little dated, you might check the doctor list on this site and see if any are close to you. Many of us see rheumies-

Best wishes-

janyj

Thank you. I thought sarc was AI. It sounds like you are saying a high RF would indicate AI rather than sarc or CFS/Fibromyalgia?

plainTRUUS

Although sarcoidosis is in itself not an autoimmune disorder it is known to frequently accompany other AI's.

Sarcoidosis is a protean disorder and it is only diagnosed by exclusion. So it is entirely possible that you may have the misfortune to have diverse AI's AND sarcoidosis.

Knowing whether or not you actually have sarcoidosis gives a certain degree of psychological relief (not knowing what you have is the worst) but the treatment for it, if needed, will be the same as for the AI's you may have. Suppression of the immune system.

Good luck and strength be with you.

janyj

Great explanation and makes complete sense. Thank you so much.

Flofly

Hi,
I have systemic sarc but mostly sinus, parotid glands - severe beyond mumps! I came across these two interesting articles this morning.
Not technically able to give you direct links.
Sarcoidosis (Heerfordt syndrome): A case report Tiia Tamme (parotid gland involvement).
Dermatologic Manifestations of Sarcoidosis Karen Polipsky Gould ( self explanatory but not nice pictures - I have Lupus pernio but thank god nothing like the illustration)
I hope you find these useful.
Flo

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