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cocobean
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Date Joined Apr 2005
Total Posts : 538
   Posted 2/11/2006 9:04 PM (GMT -7)   
 I haven't been diagnosed with RA but I did have the blood test and the norm was 0-13 and my level was 10.1 so that was considered normal.  My question is "is that kind of on the high side"  and I have also heard that if early on in the disease the test can come up normal only later to be positive.  I have seen a rhuematologist and he believes I have a mild case of fibro.  I am concerned right now because I have had horrible awful pain in both of my hips.  Sometimes it feels like my butt has been punched really hard in both cheeks :-) and if I move certain way my joints in my hip/groin area are like 'OUCH".......So it is hard to tell if this is just normal pain of fibro or if I have some kind of arthritis....I have also been struggling with jaw clenching and all that good stuff...I can't really say that I have any swelling of my joints at all anywhere and it really only seems to be my hips that bother me (as far as joints)  Anyone think the RA is on the high side and should I ask the rhuematologist to run another RA test...the last time it was done was in September....

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 2/12/2006 4:50 PM (GMT -7)   
Hi Jen,

My doctor does blood tests on me about every six months. Your tests are coming up within the normal range, but if you are having new or persistantly worsening symptoms it's best to make your doctor aware and see if he wants to run the tests again or maybe adjust your meds.

Lots of hugs,
Kimber
 
Yesterday is but a dream and tomorrow only a vision, but today well lived makes every yesterday a dream of happiness and every tomorrow and vision of hope!


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 2/12/2006 4:56 PM (GMT -7)   
I don't have much to add. My rheumatoid factor is borderline, so it's a wait and see type of thing. I've heard that it is best to go in when you are feeling your worst. My cousin has RA and although she had symptoms for years, her test didn't show up positive until she had a really bad flare up. Unfortunately a lot of us have to play the waiting game.
Dx:  Suspected Lupus 2004, CFS 1991, Secondary Raynaud's 2006
Meds:  Plaquenil 400mg, Tramadol 100 mg 3x day, Amitriptyline 10mg, Neurontin 100mg


cocobean
Veteran Member


Date Joined Apr 2005
Total Posts : 538
   Posted 2/12/2006 6:03 PM (GMT -7)   
That is kind of what I thought...thankyou for replying. I see the rhuematologist again in March so I will ask him about being tested again since that will make 6 months from the last time...

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/13/2006 12:52 PM (GMT -7)   
Dear Jenstubb,
Hey there, how are you doing today? :-)
 
Just want to give a little run-down on RA Factor tests.  We've a few people lately with question on it, about it, etc...
The "norms" vary by lab to lab too!  I know one pathology lab's normal reference for RF is 0-20.
Yours is 10.  So that is within normal limits.
The RA factor test is a tricky little booger!  tongue The blood of many persons with RA does contain a macroglobulin antibody RF....BUT people with other diseases can also have a positive RF and not have clinincal RA.
The test is a good & useful tool  in diagnosing rheumatoid arthritis.
 
Ok, when a RF test shows "positive" (meaning HIGH, over or near at least 20 or above.  but if you show a 28 or 32 or something it is more worth looking into if you also present symptoms.)...it can support a tentative diagnosis of early onset of RA.
 
If you have the RF antibody in your blood and have blood work again and are tested again...it's most likely it will be there!  confused  Why?  As many rheummies have told me, "Once a person shows RF titers, they'll always show titers."  
 
10 is low, but even people with low RF DO INDEED HAVE RA!  They can test for your  sed rate, ANA, CRP, joint xrays, range of motion, fatigue, & family history...to further evaluate.   But every person is an individual & docs sometimes tend to          nono FORGET THAT!  nono   Not every person presents in the same manner or is a perfect "textbook patient". (which really ticks me off!)
 
RF in bloodwork can show up also if a person has: lupus, TB, endocarditis, Lymes, syphilis, cancer, viral infections & sarcoidosis.
 
For you to become a little bit more aware of your body & RA, think about the folowing: cool
 
*morning stiffness lasting more than 6 weeks.
*pain on motion in the joints (typically on both sides of the body) or one set of joints. (your hips) Take notice of your knees, hands, elbows too.
*swelling (although not all people produce a lot of fluid in the joints)
*low grade fevers (like 98.9 to 99.9)
*unusual fatigue redface
 
Some folks have a RF that's always broderline, and sometimes it's completely normal for that person, and it never evolves into anything.  But...clinical and objective symptoms are very important. 
So keep a little diary of how the days are till you see the rheummy.  Especially about pain!   devil In the morning? How long does it last?  Does it get better with rest?  Worse at night?  Worse with activity?  Can you bend? etc....
 
When you mentioned "jaw clenching"...do you mean lock-jaw or teeth grinding or painful jaw joints?
I wish you the best.
If I can be of any help just let me know!
Take care,
Erin VIEW IMAGE 
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avanza 30mg & too many others.


cocobean
Veteran Member


Date Joined Apr 2005
Total Posts : 538
   Posted 2/13/2006 3:42 PM (GMT -7)   
Erin by jaw clenching I mean teeth clenching and sore jaw muscles...I had the CBC sed rate c-reactive all that blood work done at same time as RA test and ESR it was all normal.  Sed rate was low....So according to the docotor no eveidence of inflamation.  I had ALL the blood work for Lupus, syhphillis sarcoidois lyme all that done at same time as RA and it was all normal......Could just be the fibro I gues....But I am worried because right now I feel like I am photosensitive....I layed in a sunbed yesterday for 5 min (I am going to visit a friend in texas and it is really sunny where she is and i wanted to get a base so I wouldn'b burn)anyway I felt like I was sunburned all day even though I had no redness or rash anywhere.  And I just felt achy!  ARRGH!  WON"T BE DOING THAT AGAIN...but it gets me concerned about the up coming summer.  i was looking forward to warm sunny days..... 

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/13/2006 4:05 PM (GMT -7)   
hey there! :-)
 
a-hah!...you're on top of things!  at least you're covering all bases here so that's good.
i think it's just a matter of really keeping a daily record of the hip pain and other joint pains and rashes, etc...
what neds for Fibro are you taking?  lots of them can cause photosensitivity.
                                                 cool SUNBLOCK BABY! cool
there's mouth guards OTC that are available for jaw clenching.  is this @ nightime mostly?
 
awe, don't worry about the summer.  perhaps this will pass.  most likely a medication.  this summer was actually MY FIRST SUMMER IN 6 YEARS where i was able to be outside at the pool and all!  it was wonderful.  for years i was on so many medications (a lot of NSAIDs, antibiotics and anticonvulsants) and being in the sun was IMPOSSIBLE.
 
enjoy Texas!  that's great! scool
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avanza 30mg & too many others.


cocobean
Veteran Member


Date Joined Apr 2005
Total Posts : 538
   Posted 2/13/2006 4:37 PM (GMT -7)   
I am taking ambien for sleep and I was taking xnanax but haven't taken it for a couple of weeks and ibuprofen almost everyday..but that is it for meds.........So not sure what would be making me photosensitive...but here is a question for you..the only test I have had that has come back abnormal is an ASO titer test back in oct. level was 899! Yes very high..I had strep in Jan of 05 was treated with antibiotics and it seemed to clear up...anyway things steam rolled with the pain etc...and the aso titer was run under an arthritis blood panel and that was the only test that was abnormal..I was again treated with antibiotics and check 2 weeks later it dropped a 100 points then tested a month later it dropped 60 points and just tested a week ago and it is 700 so it is still high. I did some research online and it said that this titer can be high for quite sometime...I have been on antibiotics four times since I caught the strep back in 05, in october 05 in november 05 for an infection in my foot from wart removal, in dec 05 for ear infection....I think this level should be dropping much more quickly...My General practioner spoke with a pathologist who said that this just a test to indicate a past strep infection...and can remain high.. I asked my internist about it back jan this year and she said the same but didn't seem concerned...What is your experience with this test? Sorry for the lengthy post

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/13/2006 8:26 PM (GMT -7)   
Hey!
I sent you an email about the strep.

The photosensitivity? I know that NSAIDs can definitely do it, even as innocent as an Advil. Zanax as well. But I would say if it is indeed any of the meds, I'de bet on the NSAID.

Let me know if you recieved my letter!
Ciao!
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avanza 30mg & too many others.


cocobean
Veteran Member


Date Joined Apr 2005
Total Posts : 538
   Posted 2/14/2006 12:56 AM (GMT -7)   
Thanks Erin and I did get your letter!

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/14/2006 12:59 PM (GMT -7)   
hey Jenn,
i just want to get back to the Fibro topic and your hip pain problem.  you mentioned that you rheummy said he thinks it's a "mild case" of fibro. 
do you think it is mild?  when you said the pain is awful....to me that sounds NOT MILD!
 
i was reading again on the criteria on fibro diagnosis.  this feeling you described earlier: "someone's punched me in the butt cheecks"...what that is, is the gluteal trigger point for fibro.  and yeah, feels like what you described!  also, with fibro, the insertion points of ligaments into the hip cavity can cause IMMENSE hip pain, so the hip pain you feel can be FMS related.  Fibro effects not only muscles, but the surrounding soft tissues as well. 
Fibro is painful, and many times docs down-play it  nono ...so when the rheummy assesses you for fribro again (when he presses on the trigger points)  if you say "tender" , by the Board of Rheumatics it is not the same as saying "painful".  you have to say "painful" or else the definitive diagnoses of FMS won't be made, and he might go on treating you as a "mild" case when you could be recieving better fibro treatment.  :-) Good info eh?   :-)   Yeah, they don't consider "tender" to be "painful".
did you ever get steroid injections into the painful areas?
antidepressants are also VERY successful as an adjunct treatment to fibro.
how does the fibro pain effect your life and how bad is it on a daily basis?
take good care!  Viva la Mexico!
erin.           HAPPY VALENTINE!
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avanza 30mg & too many others.


cocobean
Veteran Member


Date Joined Apr 2005
Total Posts : 538
   Posted 2/14/2006 1:43 PM (GMT -7)   
Happy Valentines to you! I have not received any injections...the pain in this area comes and goes...I did see the chiropractor yesterday and she wants me to get x-rays done of low back and hip bones to check for arthritis and anything else...
When I go to the rhuematologist my tender points move around quite often...but when I see him in march I will be sure to say OUCH! He did put me on effexor for a little bit but I couldn't handle the side effects...made me feel like I wanted to crawl out of my skin and then five minutes later I would feel like I just didn't care about anything...I know there are other ones out there to try and my general practioner has prescribed lexapr but i am waiting till my husband gets home to try it because I hate taking new medication and being alone with my son. My husband works away from home and is gone 2 weeks then home 2 weeks..... This fibro thing is so weird...Some days are just awful and the pain moves around and then other days i feel ok...It is always worse before my period(I am 3 days from starting) So right now I am feeling more dizzy and vision is off a lot...and unfortunately I swear I started to feel worse after laying in the sunbed for five minutes. So ibuprofen can make you photosensitive??Weird I had never known that....I had taken the zithromax the 3rd week in Jan...so I guess that would probably still be active in my system..Anyway. Thanks again for your info! Your like an open book! Full of Knowledge!

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/14/2006 4:02 PM (GMT -7)   

with the sunburnny kinda feeling, NSAIDs & just getting off Zithromax could be making you feel the effects of a tanning bed moreso...also, with antibiotics you're really suppose to avoid the sun. cool

fibromyalgia is weird, my neighbor has it (among a lot of other problems) & she too says that her skin feels "HOT", but she's cold all the time....like a wind burn feeling.  so many different feelings can come with FMS.  hormones definitely play a certain role in FMS as to when it flares up and also when a certain hormome dips....you feel less pain!  whacky. eyes

i've heard many patients describe FMS like this..."It hurts to touch my body, even to run your hand across my skin"...so even having your SKIN hurt is a part of it.

i remember there was about a good 4 years where it actually hurt to touch my body anywhere.  i went for a massage....forget it!  clothes hurt to have on...couldn't even wear a bra!  and to take a shower? whoa!  well, it still hurts to take a shower...so i definitely can empathize with FMS sufferers who have all over pain.

the main thing with treating fibro is to essentially manage it by eliminating contributing factors which make it worse, meds for sleep disturbance, and NSAIDs & analgesias.  i wish there was a way to eliminate it for people. {heck who knows...maybe i'll find a cure once i get back to work! hee hee! } some things though we cannot control...like our mad menstral cycle devil ..darnit! mad   i wish there was an "on-off button" for that!

good idea with the XRAYS! :-)

lots of folks REALLY get GREAT results for fibro with a combo of acupuncture, Reiki, chiropractics and analgesics (nsaids) & pain meds.

at your next rheummy appointment, inquire about injections of a steroid...for times when the fibro is really killer!  prednisone really gets ya out of a bad flare of anything! fibro, RA, Crohns.  it's kinda like an "instant cure all", but only when absolutely needed.

i wouldn't be surprised if your FMS follows cycles!  many people, especially females, it does! so weird.  it's a hassle & such an interference in ones life.

scool erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avanza 30mg & too many others.


cocobean
Veteran Member


Date Joined Apr 2005
Total Posts : 538
   Posted 2/14/2006 5:49 PM (GMT -7)   
Sometimes it hurts for me to wear a bra! I can tolerate it but it is very uncomfortable. Not right where the bra strap is but just above and below.....ARRGH! And my skin has felt hot to the touch the last couple of days....I have been taking about 3 or 4 ibuprofen in the morning because that is when I feel the worse....Have lots of questions for Rhuemy now in March. Thankyou again Erin. I hope you have a great day and I really appreciate all your thoughts and advice...There are such great people at healingwell!

hunybun
Regular Member


Date Joined Dec 2005
Total Posts : 38
   Posted 2/15/2006 7:02 AM (GMT -7)   
Hello all Fibro and chronic hives girl here .... and just found out i have the starts of arthritis in my upper back and lower and my knees and hands...woo hoo!  To Jen you really sound like a fibro person with what you have written so far......fibro is a very weird thing.....the pain moves around and is from mild to just shoot me feeling...i have all pressure points and am pretty much tender to touch everywhere...i do feel that if you don't tell the doc's that you are in a great deal of pain they are more than happy to write you off of having fibro because they don't seem to like to deal with us fibro people that much.  Please do find another way to control the pain besides advil aleve or the over the counter meds.....I am allergic to all med and had to take aleve i got up to now don't faint when i say this 16 aleeve  pills a day for 3 months then became i got use to them then stay off for 3 months.  Yes my doctor new this and it is what i had to do until we found a way to control the pain.  The pain was bad...i have very thick hair and the weight of it caused headache and the top i couldn't touch so washing the hair was painful, so i cut it all off short. I don't take many meds now which i have found the pain(on the pain scale always 8 and above) is better and hair has grown back.  I was very lucky that the aleve did not damage anything that we know of yet.  During that time i was also on heavy doses of Steriod and that induced my fibro (had hive before other problems)  If you find that it is fibro please do something that i have learned over the last 8 years of hell and might make your life better.  Keep a diary...how you feel in the morning what you eat and when you take your meds how long before they work and how well....you might find you have to break your doses in different way, cause most doctors say take one in the morning and one at night....or 3 times a day.  write down what activities you do and how you feel right after 1 hour later 2 hours later blah blah blah...i know this sounds like a lot but fibro is very aware of your body and what you do to it and what you put into it....I have changed my diet because many foods make it worse.....Tomatoe sauce and carb loaded foods hate me.....so i eat like a rabbit salads and bananas and drink a lot of water, i have found since fibro i am more dehydrated.  Foods really play a big part so you have to write it all down and see how you are.  Fibro is funny in a way i will do something i feel i can do at that time and a week later i feel like a mack truck has hit me.....i also am light and sound and cold sensitive and heat...don't have problems in tanning bed but none of my meds cause that.  Well i really could go on with the fibro since there are so many different things fibro people have.....please go check out the fibro area and chronic pain might give you some answers and might give you some questions to ask your doctor...also i would find a doc that knows about fibro and arthritis so that know the differenc between the two.....cause they really would rather deal with the arthritis part more......good luck and hope i helped some I have found a mild pain med robaxin but can only take for 3 months as before and off 3 month because i get use to it and don't want to have to double than triple and so on.  For fog that comes with fibro i take concerta so i don't have to leave bread crumbs to remember all the time...and last but not least.....remove stress...fibro's main food source is stress!!!!!! and i can not stress this enough!  Well good luch in the war with pain for whatever the cause maybe.... 
 COURAGE 
Doesn't always roar. 
Sometimes courage is
the quiet voice at
the end of the day
saying, 
"I will try again
tomorrow."
Cats seem to go on the principle that it never does any harm to ask for what you want.


RedHotMomma
New Member


Date Joined Jul 2013
Total Posts : 1
   Posted 7/5/2013 1:33 AM (GMT -7)   
Ok Question.. I have lots of symptoms of having RA plus it is rampid in my family my RA factor tests was positive and my RA with Titers was normal Im waiting for the Ruemy to see me ,  HAs anyone else on here that is Diag. with RA have the same type of test results ? with symptoms?
 
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