Need to know about the RA Factor blood test. Normal is 0-20 and I scored a 72. Is this super-high?

By Lorrie B. Smith Saturday, January 17, 2009

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Hello, my name is Lorrie and I desperately need some answers. A little background: Healthy as a horse and a gym-rat until age 38. At 39, I got stage 2 invasive breast cancer, due to having the BRCA 1 gene. (No lymph node involvement!!) Subsequently, I had a double mastectomy and a total hysterectomy. The cancer was a breeze, except for a side-effect from my last bag of chemo. It swelled my small intestine shut and the doctor's waited so long that when they finally took action, I had 12 hours to live and a 50/50 chance of surviving surgery. This after 3 weeks. Therefore, I was left with, what I thought, was residual pain.(Denial, I had paratenitis and sepsis, not joint pain) I've also been diagnosed with MS and RLS....every dang doctor has his own opinion. Is it MS? RA? MTV? Most say MS.

A couple of months ago my knee became painful and swollen again, 10 years after its 3rd surgery. Than it very quickly moved into my right hip and ankle. Pain, no swelling. My fingers are swollen like little Jimmy Dean's sausages every morning...and slightly painful. I have to work them in the morning. My back and shoulders are jumping on the band wagon now too.

This is all coupled with occasional muscle pain and weakness. I'm in good shape and this shouldn't be happening. I do, however, drink Genesis and Ultra Vitality, which is has given me a lot more energy than I've had in 6 years. I got it to start my own business, but I'm taking it along with my husband. He has a LOT more energy than he did a month ago. If anyone is interested in more information, just email me at lorrie.bensky@att.net. I think it would be tacky to post the web address in this new blog, However, my doctor is very pleased I'm using it. I'm praying it will slow down the progression, because my symptoms came on fast and hard. Very scary.

I'm sorry this is so long and if you took the time to read it, well God Bless you! Those who didn't, well God bless you too! I will be so grateful to anyone who can shed light on my symptoms, since this is new. I also really need to know if my RA Factor test score of 72 is really that bad, since the normal is 0-20.

Thank you so much for your time.

God Bless~

~Lorrie

Comments (23) | Add comment

shannonlee

1/20/09 7:32pm

I'm no expert but I am getting familier with the good ol' rheumatoid factor. From my personal experience, I rated a 41 a year ago and a few months ago it went up to 81. My primary doctor says every time I do see him, my rheumatoid factor is 'through the roof' so guessing thats high and high is bad. Sorry thats not enlighting words but something you should check out further. As far as your MS situation, spinal taps and MRI are the best bet for finding that answer, I had neurological problems, you know problems speaking, numbness, forgetfulness...all the classic 'symptoms' of MS, I had an MRI-luckily NO nerve damage, instead a pituitary tumor instead. Im learning to search and research, and second opinions dont matter if you can see the bloodwork and xrays. Good Luck!!! You have battled and still contiue on....

Lorrie B. Smith

1/21/09 11:29am

Hi Shannonlee,

Thank you for the info., but MS is the "Great Masquerator" (sp?). Placques on the brain and/or bands in the CFS sometimes do not show up for years. Terri Garr suffers from MS and her proof didn't show up for 26 years. I've had just about every symptom of MS and have had other doctors say, don't worry, this is just "classic MS", meaning I don't have another condiition and it is controlable. This has been going on for 7 1/2 years, when my now ex-husband made the initial diagnosis. Than, no placques, no bands, no MS. These doctors need to ALL know (Some have said definitely) that sometimes it's there, even if you can't see it. Ask Terri.

Anyway, I hope your numbers have dropped "trough the floor!" :-) and I'm going to stop sweating it until my doctor's staff decides to give him the message that I called yesterday. They're terrible. When I braded down a few weeks ago (at home to 46-50) my husband called them and "someone" told him to take me to an URGENT CARE! He said "No way, you're grey and going to the hospital" I don't remember much, but I remember seeing myself at 37 and a nurse shouting that I was brading down. They told me I got to 31 and was thisclose to finding myself in the ICU with external pacemaker. This whole thing is ridiculous and I am soooo sick of doctors and specialists and on and on and on. As I'm sure you are too. We'll have an appointment-limited 2009 and take back our bodies! I'm just glad noone can tell by looking at me that I've shot these things down like clay pidgeons.

Happy New Year and God bless! Lorrie

Lorrie B. Smith

1/21/09 11:29am

Hi Shannonlee,

Happy New Year and God bless! Lorrie

Ellen Galo

3/ 4/09 3:04pm

Hi - just have to ask, how did you deal with the pituitary tumor?

Ellen

P.S. My father had prostate cancer and they were going to remove his pituitary gland as a last resort, so it wouldn't stimulate the testicles to produce male hormone - an operation to remove the prostate had not worked out, and he'd been on female hormone (DES) to counteract the male hormone, but a couple years down the road, the cancer started up again...) They tried to remove his pituitary through his nose (strange), and they ran into a problem there too. I guess his time was up - he's been gone for a long time now.

Lorrie B. Smith

3/ 6/09 10:59pm

Ellen,

I never had a pituitary tumor. What else causes hypo-thyroidism?

Lorrie

P.S. I will pray for your father.

Lorrie B. Smith

3/ 6/09 11:02pm

Ellen~

I am so sorry, I read your note so quickly I didn't realize your father had passed. My deepest apologies and condolences.

~Lorrie

Ellen Galo

3/ 7/09 3:04pm

I think the thyroid is just underactive....

Ellen

Ellen Galo

3/ 9/09 8:19am

it's quite alright! He passed away over 25 years ago...

Ellen

Ellen Galo

3/ 4/09 9:44am

Hi Lorrie,

I'm just checking, but those numbers sound like ESR - Erythrocyte Sedimentation Factor, not RF - Rheumatoid Factor. Rheumatoid factor is normally given as a "titer" ratio, such as 4:1. ESR (or "sed rate") is a measure of general inflammation in the body, from any cause. 0-20 is normal. When I first got tested, mine was 28 and my doctor said, "that's not very high, I think you just have fibromyalgia." A couple of months later when my wrist became very swollen, he said we should do the test again. It was 48. When I'm on Enbrel, it goes down into the 20s again. When I was off for 8 weeks for surgery, it went up into the 60's or 80's. No, that didn't feel good at all! So, yes, 72 is high.

It's good to get a copy of all your test results to try and keep everything straight, and be able to look back and see how the medicine is helping, or not helping. (I even have a spreadsheet...) Your doctor should be able to give you copies - some offices charge, some don't.

You might want to check if you had a test for anti-CCP antibodies. That's a very specific test for RA (even more specific than RF).

Hope this helps. Write back if you like!

Sounds like your body has gone through a lot! Best wishes,

Ellen

57 years old, RA and FM. Enbrel 25 mg twice a week, Celebrex 100 mg (frequency depending on how I'm feeling) and other stuff as needed...Also have reflux and take omeprazole (generic Prilosec). Supplements: B1, B6, B12, Brewer's yeast, OsteoBiflex, Guaifenesin, Ca/Mg/Zn supplement.. Still working.

Lorrie B. Smith

3/ 4/09 2:14pm

Hi Ellen,

Thank you for your thoughtful letter. The blood test my GP took he called an RA test and sent me to a rheumatologist. She confirmed the numbers, but maybe she was talking about a different study. She said between my blood work and my X-rays, I did have RA. This was my 45th B-Day present and I lost the receipt. (dang) I also have had MS for at least 8 years. My ex-husband was the first to diagnose it and it's been bounced around for years. I don't have too many exasperations, however, I'm also just very used to them. (The blurred vision, etc..) The worst one was total leg paralysis for 14 some-odd hours.

My current neurologist has definitely ruled out fibromyalga. (did I spell this correctly?) He said I had "Restless Leg Syndrome, which I found ridiculous.

I haven't been tapped for 2 years and think it's time for another CSF test.

Anyway, you've given me a good number of test names in which I can ask my rheumatologist. I'm going to print your response, because you've given me a lot of useful information and food for thought. I appreciate this. Believe me, when I had cancer and discoved I have the BRCA 1 gene, I studied like crazy. After a day with OSU's genetic team, I did what I had to do to live. This isn't any different. I'm still working out and still very fit and healthy. I'm going to fight this tooth and press-on nail!

Thank you again Ellen.

Lorrie

Lorrie B. Smith

3/ 4/09 2:39pm

P.P.S.

Ellen, I forgot to tell you how sorry I am that you're suffering both RA and FM. You're a warrior! I just go with the flow and do what I must to be comfortable and safe. I'm only taking 3 tabs of 2.5mg Methtrexate, once a week. I don't feel any difference, but she told me to be patient, it sometimes takes awhile and I've only been diagnosed 3-weeks ago. For my MS I take Neurotin (numbness), Amantadine (alledged "crazy legs") and Bethanachol (to empty my bladder).

I've also been on a thyroid tab for 15 years solid from age 30 with 1 year at age 17. I'm 45 BTW. I have hypothyroidism, it's annoying.

Question: My recent intolerance to extreme cold, especially in my fingers. Is that RA?

Thanks again,

Lorrie

Ellen Galo

3/ 4/09 3:00pm

Hi again Lorrie,

ESR is one of the tests, along with RF and Anti-CCP that is given for RA. So it probably was one of your "RA tests" as it was for me. Another one I didn't mention is C-reactive protein (CRP), which is another general blood test for inflammation. A very high CRP can mean a risk of cardiovascular disease or liver disease, but it's usually high in RA as well... I hope I'm not confusing the issue more!

Wow - MS plus breast cancer and RA - and you're a lot younger than I!

I met a woman a few years ago who, in one year, had to deal with diabetes onset, breast cancer, asthma and one other thing I can't remember .... talk about falling apart! And you'd never know it from looking at her - trim, attractive, not looking battle-worn... amazing. I've met or talked with 2 people who have both lupus and RA. I think there is also something called "mixed connective tissue disease" when there are characteristics of more than one disease... and lupus takes a long time to get diagnosed, like MS does sometimes.

Ellen Galo

3/ 7/09 3:08pm

Very cold hands (do they turn blue, red, or white?) are Raynaud's syndrome. I don't know much more about it, you can probably google it. It's not necessarily connected with RA, can be just by itself. It's a reaction of the blood vessels that affects the circulation...

I didn't know there is a drug to empty one's bladder. I'm going to see a GYN person soon, because sometimes #1 seems to block #2 or vice versa, and I'm not sure what's going on - maybe have some prolapse (falling organs) or something! Oh joy...

Ellen

Lorrie B. Smith

3/ 9/09 5:51pm

Well Crud! Hi Ellen! Thank you for giving me more information. Yes, my hands get extremely cold very fast these days, however, I dodn't pay attention when it happens. Also weird, I had, for no known reason, a probable seizure in my sleep and almost bit my tongue off. It didn't wake me up. The dentist sent me to the oral surgeon who said it was going to heal on its own. I woke up and looked for the horse's head! I don't remember a lot of pain. Anyway, my point is now after three years, my toothpaste burns from the scar to the tip. About and inch up. Can't explain it, I just keep sticking under water.

Now, tell me why my skin.....all my skin is totally mottled? Except my face, thank God. Enough to where friends and acquaintances are startled when they see my arms. It show up if I'm cold, but when I'm cold, watch out!

I don't feel sick, I just bought an iPod to help me workout and run, so what on earth is happening to me?

Sorry so long, you're very kind Ellen. Thank you

Lorrie

Ellen Galo

3/10/09 10:57am

Hi Lorrie!

I recently talked with an old friend with RA & FM. She started having seizures too - some kind of focal epilepsy, not exactly like you. She's now on a drug for it. It helps, even though she wishes she didn't have to take it.... I also knew someone with very bad multiple conditions - he would go into "pain shock" and would kind of freeze up and not be able to unclench his hands. He had to take a lot of drugs (literally, a page-ful) for the multiple conditions - previous kidney cancer, COPD, FM, fungus infection in his lungs they couldn't get rid of, they just scraped it out periodically (how bad can it get? whew!)

If you want, I could ask my friend what treatment she is getting, or who her doctor is, if that would be helpful. She does not live around here anymore... I think she's in Missouri, near a medical center, but if it would be helpful, maybe one doctor could speak to another.... unless you've already got some kind of diagnoses with the seizure.

Sorry to hear you are having such difficulties! Did you check out Raynaud's? It is also possible to be 'allergic' to cold... a friend's husband's throat was reacting to cold (we have bad winters up here in the North Country!) and was told it was a kind of allergy. Our bodies are so amazing - and so frustrating at times!

Ellen

Lorrie B. Smith

3/10/09 11:15am

Hi Ellen~

I'm going to look into this Raynaud's, but I don't want to start getting caught up in the differentials of varying possible other diseases and tests. I have a great rheumatiod doctor and if I disagree with her or want more tests, I'll tell her.

I spent too much time researching my cancer and my MS. I don't care anymore. I'm tired and don't wish to study RA, unless she determines I have an agressive form. Your advice is sound and I appreciate it, I'm just tired and don't want to think about it that much.

Ellen, you've been so kind and helpful and I'm printing everything off, but I just don't want to get technical again. The MS study just drained me. When I learn more on the 23rd, I'll tell you what's going on and where I am.

God Bless you,

Lorrie

Ellen Galo

3/10/09 11:30am

That's fine, I understand. Definitely do what's best for you!

Cheers,

Ellen

Grandmatxs

5/ 6/09 3:37am

Some labs do report the RF in general numbers. To me 72 isn't that high since mylast RA factor was 225. I was first diagnosed in 1976 just 5 mos before my 30th birthday. In 1977 I was told that I'd be completely crippled within 2 yrs if we didn't find something that worked.

I can't take the NSAIDs because of my stomach's sensitivity to them. So, I was put on DMARDs within a yr of being diagnosed. Now I get 6 vials of Remicade every 6 wks in an IV. I also take 20mg of Arava daily and 200 mg of placqunil twice a day.

I can't take methotrexate because it makes me sick. Because of all the swelling in the feet and knees and legs I ended up with pheriphal neuropathy. At one point I was taking 3600 mg of Neurotin. My neurologist switched me over to 60 mg of Cymbalta once a day and 100 mg of Lyrica 4 times a day. I also have Fibro and Sjoren's.

I've recently developed type 2 diabetes but so far I've made liars out of the doctors that predicted I'ds be completly crippled with in 2 years because so far I'm still getting around under my own power but I will admit with the blown disc, degenerative joint disease etc I'm hurting like all get out. I try to stay busy. My RA is doing really well

right now and all that could change tomorrow.

Ellen Galo

5/ 6/09 9:05am

Hi Grandmatxs - let's see, is that short for Grandma in Texas?

You sound like quite a survivor, congratulations on beating the doctor's predictions! Yes, I have realized from what others are saying that the RF (rheumatoid factor) is reported in different ways. I only knew before what I saw on my own report, which was positive (barely) but very low, something like 4. But if I only hear someone say 64, that could also be ESR, so just wanted to double-check. From what I have read, the RF number is actually the number of times they have to dilute it (double the solution liquid) before the RF doesn't show up !

Thanks for sharing your story - I'd love to hear more about how you have coped with this all!

Anonymous

5/ 7/09 5:41pm

Lety me try this again.
Yes, one of my grand daughters gave me the title of GrandmaTxs in order to keep it straight in her mind which grandma was which especially since both of us were named Mary.

As far as getting by I do it one day at a time. Some days I feel great-thats when I have to be careful not to overdo. Which I have this last few days and I'm paying for it right now.

Other days like now I hurt like he**. Usually I try not to give into the pain unless it's been bad for a couple of days and then I know I need to give my body a rest.

I try not to let the RA interfer with my life. It's been there since I was 29 yrs old and I'm 62 now so I've lived with it for 33 years. Part of the time I've been in remission and then when I went back to work in 91 it started coming back the longer I worked.

I ended up being forced to retire in '03 It took me 2 yrs to get my SSDI but it was backdated to my last day of work.

So now I enjoy just puttering around my house playing with our 4 legged children

and traveling when I can.

I'm willing to answer just about any question about the RA If I can help anyone I'm more than happy to.

Lorrie B. Smith

5/ 8/09 1:26pm

You just did. God bless you and your tail-wagging kids!

Jean07

2/22/10 11:42am

I have always wondered how my RH factor compared to others mine was 2310 and my Sed rate usually fluctuates between 86 and 106. My ra also has caused Pulmonary Fibrosis which got worse last Sept. My doctors put me on Menthalpredosolene(a Steroid). I don't remember ever feeling so good no pains at all and no problems breathing. I have been lowering the dose of the steroid since Nov. I got down to 12 mg and all my symptoms started coming back talk about depressing. My dodtors decided to go up to 16mg of the steroid to

see whay happens. I really want to get off the steroids-I am worried about the side effects.

Jean

Jean07

2/22/10 11:43am

see whay happens. I really want to get off the steroids-I am worried about the side effects.

Jean

Need to know about the RA Factor blood test. Normal is 0-20 and I scored a 72. Is this super-high?

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