Is there such a thing as "sort of" having RA? | Arthritis Information

 

Hi Again,

FOR GOD'S SAKE - START PROBIOTICS! You could easily have another type of arthritis as well.  Just because you have RA, doesn't mean it will be visible.  Not everyone has large viewable swellings. bubbagump2008-03-18 11:37:59That is how I was after I had my daughter. I did not have what I have now. It slowly got worse and after having my son it really got worse. I had the BIGGEST BADEST flare, I ever had in my whole life of having this disease, after I had my son. lol, my hubby is also my hands and legs. And hes so happy about it! he does a good job, and I am good to him back! Good luck!You sound like you may have what I have...undifferentiated connective tissue disease.  I don't know enough about blood work to comment on your numbers, but I can tell you my blood work suggested RA and lupus in one set, but other tests were less conclusive or negative.  I also don't have any inflammation but had joint pain that wasn't always the same on both sides and I was missing other classic RA/lupus signs.  In short, there was no clear indication of what it is but it's definitely a connective tissue illness.   My RD said something similar in that he wanted to keep it from becoming full-blown anything and because I was having neuropathy issues, he started an aggressive treatment program.  He didn't even ask me, just said it was what we should do.  If you're having a lot of joint pain and have a nodule already, I'm a little disturbed that your doctor isn't treating it before you sustain damage.  That comment about the prednisone bothers me too.  If she didn't think it was a good idea, why did she offer it?  And shouldn't she be giving you more guidance?  It seems to me she's letting you make the decision when she's the one who has the medical knowledge to make the best call.  Now, I'm just going by what you've told us about "jumping off a cliff."  Since you're having joint pain and aches, it seems you're more likely to go full blown than not.  I agree that prednisone would not be the way to start, but it sounds like you need to be treated with something to make sure you don't fall off that cliff.  Please get a second opinion.  [QUOTE=bubbagump]My doctors still don't like probiotics due to side effects of TB etc.[/QUOTE]

Wow...I mean WOW. PLEASE provide more information on this bombshell. I am a proponent of probiotics and recommend them to everyone, but in light of this bolt-out-of-the-blue I am left floundering in the ozone of what-the-hey.

I am unaware on any connection between probiotics and TB. Please provide the sources that make this connection as well as the details behind the connection.

This takes my breath away...literally and figuratively. I, along with every other member, NEED to know more!
what are probiotics? How do they help?I think predisone in your earliest days is a good way to determine if it's an inflammatory illness or not. Predisone can give the doctor a lot of insight into what's going on. It doesn't mean you have to stay on it long term at all. I agree with Jess in the fact that your doctor should give a little more guidance than she is. You don't have much experience with this stuff and therefore I don't feel you're qualified to choice at this point what medications are in your long term best interest. Hmm, your symptoms sound just like mine.
Bubbagump said : [QUOTE] [/QUOTE]

Bubba, I'm a little confused by this. I've never heard of any connection between probiotics and TB. Can you clarify? Or maybe you're confusing probiotics with biologics? Probiotics are helpful bacteria that are found naturally in our guts. Biologics are tumor necrosis factor inhibiting medications we inject into our bodies.

CNDdream, your bloodwork is really close to what mine was at diagnosis. I also had a swollen knee. My RD knew right away I had RA. It's better to not fool around and hit it really hard while it's still in a weak state. That could be high doses of MTX, MTX mixed with Remicade (which some studies have shown can actually reverse the disease process in a very early state) or 16 months of Minocin at 200mg a day (that's 100mg twice a day). I wish someone had told me that when I was first diagnosed, so I would not be stuck with this craptastic chronic medical condition.

I also agree with Pip! that probiotics are very beneficial, although even as early progressed as you are it might be too late for the probiotics to reverse the disease.I think probiotics can only really work if you are pre-RA. I also wish I had known more when I first started having bowel issues, and had not just ignored them.

Early diagnosis with aggressive treatment is the number one thing you can do to improve your long term prognosis with RA.

None of us likes taking any of the RA meds but in the long run you will be better off meeting it head on instead of letting it get a better foothold.

Good luck.I'm so sorry. I feel like a moron right now... from most of your answers it seems like "duh, get on meds, you have RA" is the common thread....  whereas I thought there was a pretty good chance that I did not have RA - from the way my RD was, it seemed like I did not have RA.  I guess I need to call and talk to her more, as I'm VERY confused.  Keep in mind that we might be misunderstanding you....not the other way around. We don't know anything about you, your symptoms, your history or even half the information your doctor knows. Yep, yep on what Lovie said. [QUOTE=ShaDucky]what are probiotics? How do they help?[/QUOTE]

Check >>THIS<< as well as using the Search function for a plethora of information on what probiotics are and how they can help...
Hi, just to clarify, I'm not "upset", not at all. i'm here b/c i want answers and insight... as i'm so confused.

is there a definite way to diagnose RA? it seems like some doctors will dx early and some will not. Is the reason my RD has not said "yes you have RA" because I don't, or because I might, or because she is that type of doctor- I guess I just want someone to tell me.

I don't want to start on meds if I don't have it.... but if i don't have it, why all the joint pain???

This is my confusion --- do i have it? I guess my MRI on tuesday will help?

I feel like an idiot for being so uneducated. [QUOTE=bubbagump]I'm so sorry. Thanks, I have never hear of them before with RA.CDNdream, I think a lot of Dr's are reluctant to diagnose RA because it's hard to treat (talk about denial issues!) and for some reason the average time it takes to DX a woman is 9 years. Men are usually DXed on their first visit. This is gender inequity at its finest.

Also, Dr.s are VERY literal, so even if it's as plain as a nose on a face to a layman that you have RA, a Dr. won't say so unless you have 4 of the 7 DX criteria.

"These criteria were developed by the American College of Rheumatology in 1988 and are still used to diagnose rheumatoid arthritis. Of these seven criteria, four are needed for a diagnosis. Criteria 1 through 4 must have been present for at least 6 weeks.

1. Morning stiffness lasting at least 1 hour before major improvement

2. Arthritis in three or more of the following joint areas on either side of the body: middle joint of the fingers, the knuckles (the largest joint that connects each finger to the rest of the hand), wrist, elbow, knee, or ankle or the joint between the toes and the foot (the joint at the base of the toe, closest to the foot)

3. Arthritis in the hand joints: specifically in the wrist, the knuckles, or the middle joint of the fingers

4. Joint swelling of the same joint on both sides of the body (symmetrical) or joint swelling on both sides of the body (but not necessarily the same joint) affecting the middle joint of the fingers, the knuckles, and/or the joint between the toes and the foot

5. Bumps (nodules) that develop under the skin over pressure points or areas where bones protrude

6. Positive RF (rheumatoid factor) test

7. X-ray changes that show decalcified (more porous) bone or uneven patches of bone erosion (osteoporosis) around only the joints affected by rheumatoid arthritis. Thinning bones throughout the body (osteoporosis) unrelated to rheumatoid joints do not qualify."


That said, Lovie has showered us with words of wisdom in her last post. Your Dr probably knows more about your consition than we do (and I certainly hope it's NOT RA, but if it is that needs to be speddily addressed). With RA the first year is the worst, but it sounds like you have pretty early detection of whatever your problem is so I am sure it will be all worked out to your best advantage.

Gimpy-a-gogo2008-03-18 12:06:03PS....great link HappThe lady at the store said she was developing RA. I wondered what that meant? Tell him you do not want to go the wrong way over the cliff. Sounds to me like he is trying to push you off the wrong direction if he does not give you treatment soon. I am going back to my RD tomorrow. Which i was there ten days ago. And i am bad swelled. Pitty is i am thrilled about it. Thrilled about showing him not about being sick. Anyway so i am able to show two symetrical badly swollen knees and i showed him two symetrical swollen ankles ten days ago but the swelling was not extremly impressive ten days ago as i was coming off of high dose pred. I feel for you big time, that does not do you any good. I hope these other test help prove yor point. With a new RD and i have an anti-ccp of 100. They still want to run there own test if you are not swollen big time when they see you. So if you see a new RD right away you may still end up waiting on test. I was in your boat years ago and tried sticking it out with a lady RD. It was a six hour drive it took four months to get an appointment. And my gp at the time was in my opinion, well i will not say, of no help. So while you are waiting on test if you swell up and can get back to the RD go show him. Thats the first thing i can suggest. But if he will not help after the test come back then see another doctor. You do not want to get sicker i promise you that. For me it is especially hard because i have fibro so bad. And i have so many joints that swell the docs thing i am nuts. So last Monday i went in and said my ankles have been doing this for ten years. I did not even much try to bring up everything except the Raynauds of course. The sjorgrens is well documented in my medical records. In January  RD tryed to tell me i might not have RA yet. I straightened him out pretty quickly. I swelled from september to jan and had quit swelling 10 days before RD appiontment. So do not give up hope on your films they may help you. But the deal is you could get very sick if someone does not help you soon. I for one am a mess.I'm not sure an MRI will prove anything unless you actually have joint damage and sometimes that take a while to occur. I guess of course if they suspect a different problem maybe it could find that. Lovie2008-03-18 12:12:48Lovie, in Canada MRI's and X-rays cost us the same....nothing. But you have to wait a LOT longer for the MRI.Gimpy-a-gogo2008-03-18 12:11:32Here's a good one: http://www.rxed.org/umce/TNFtable1.htm

OMG...Lovie, that's about what we would pay for a skip-the-lineup private MRI, too.

It just occurred to me I had only 3 of the 4 criteria when I was DXed (and my RF was only a little above normal). I definately have RA, though
I had 5 and positive blood work was not one of them! 37 is pretty high, but it's possible to have a positive RF and not have RA. 

true; I have heard that.

[QUOTE=Gimpy-a-gogo]37 is pretty high, but it's possible to have a positive RF and not have RA.  [/QUOTE]

My understanding is that is depends on what methods are being used by labs. For instance, according to Medline Plus normal values are:

• Less than 60 u/mL (with the nephelometric method)
• Less than 1:80 titer (with the agglutination method)

Many people test "positive" as the aftermath of viral infections or mono.

FWIW.

Edited in an attempt to make link hot...
Happ2008-03-18 13:21:24Joonie - I am not breastfeeding anymore, I did from June - December.    Today is a bad day. lots o' pain in hands and elbows.

I don't know anything about RA other than what i have googled and all the information is so overwhelming. I want someone to say i have it or i don't...

When you say "it's not that you kinda have RA - it's that you have to catch it..." that confuses me. If I don't have it... i don't need to catch it before it gets worse. How do I know if I have it or not.


If I trust my instincts, my instincts say yes. but i'm no doctor.

ARGH. Modern medicine is so confusing.

And, what are PROBIOTICS? Like active cultures - or does one mean the modern RA meds?I can certainly understand how you'd be confused. Hearing it like that I think I'm confused! I would go with my instinct and push for a diagnosis. Your doctor has more medical training than you but only YOU have the experience of living in YOUR body.

Probiotics are the hundreds of strains of beneficial bacteria that live in your gut. You need to have a certain amount in you for digestive health (which many people are coming to believe is more connected to RA than previously realised). Some foods you eat have probiotic qualities, such a cultured yoghurt (actually, all yoghurt starts off probiotics, but many commercial brands all the probiotics have been killed off and then some brands like Activia add in chemically made starins. Use plain preferably organic yoghurt such as Liberty brand).

You can also buy probiotics in over-the-counter pill form or powders. Look for enteric coated pills that have a good range of bacteria. I usually switch brands frequently to ensure a wide range. I have looked into probiotioc food sources extensively and believe you are better off getting your probiotics from foods but that said, I still use OTC pill forms as well.

I'm looking for a thread where I discussed probiotic foods at length with Joonie, but I'm having trouble finding it, so I will have to look when I get home later (I have to leave the house now). Also, try searching "probiotic" in the search feature and tons of threads should come up.




Swelling after child birth a very good indicater for RA or AI. I do not believe  that happens with other things that make your RF go up like a virus or mono. You do not have to convince me anyway. If it hurts bad and swells go show the RD and then you have your proof.PS...take pictures of any swelling to show your RD in case you don't have any swelling at the time of the appointment. What is AI that Milly referenced? Arthritis Inflammation? Just guessing.p.s. i have never had visibly swollen joints, nor are they sore to the touch. just sore from the inside-out. almost makes it feel better to touch them.AI is Auto Imunne

Dream, I still think the best way to get to the bottom of this quickly is to get a second opinion.  Hopefully that doctor can be more specific in his/her diagnosis or be better able to answer your questions.   Of course you don't want to take meds if you don't have to, but it's really important that you find out for sure if you need them or not.  You have a window of opportunity here to nip this in the bud.  You have nothing to lose by talking to another doctor, even a PCP if you can't see anyone else.  Have that doctor do more blood work and see what comes up.  Then go from there.  You've asked some really good questions.  Take a list with you and ask those same questions of the new doctor. But, by all means, see another RD if you can for that second opinion.  We really didn't mean to scare you and you certainly aren't silly or dumb or anything by asking these questions.  You have a right to be confused and now you need to take the next step and find out what exactly is going on.  We're rooting for you that it turns out to be something other than RA, something more benign.  Please keep us posted, OK?

Well, isn't this funny.  I had 1 criteria when diagnosed and that was a nodule on my elbow.  Sheesh.  And to think I was in HELL and they finally figured it out. ok..you want to get to the bottom of this and start the appropriate treatment.  But you want the correct diagnosis and the proper treatment.  You show some signs of RA but not enough at this time for a definitive diagnosis.  Have other things such as hypothyroidism been ruled out. I don't quite know what I've got, but I do know something is clearly wrong and that's the whole point isn't it? Persistence is the key. While I don't particularly want RA, I'd much rather know that I do have it and start dealing with it. Or whatever it turns out to be and deal with it.


Here is more info:

Thyroid was normal in bloodwork.
Hep B and Hep C screens were negative
Vitamin D was low (26) - range was 30+

C-Reactive Protein was 8 (elevated)
CCP was 15.6 which they said was in range

My RF was 37 in November. Do not know what it was this time (March)

The only change in my bloodwork was in November 2007 my sed rate was 4, now it's 12.

I wish I had a rheumatology degree.Although your sed rate has increased it's still in the normal range isn't it? I think it has to be over 20 or so before it's considered high. Mine runs about 25 and never causes a panic.....just signals active inflammation. I agree that anything to improve gut function could have had a huge effect on the course of my rhumatoid arthritis.  
Only wish I know then (10 years ago) what I know now.    Get those probiotics down you!!!   Cut out inflammatory foods (i.e. gluten, dairy, red meat, preferably go vegan) and never, ever eat anything with additives.
anna
I would go and get a second opinoin if possible.  Ive never heard of "sort of"having RA....but weirder things have happend i guess. your inflammation markers aren't elevated, ccp is negative and a low postive rheuamtoid factor.  If its RA it hasn't really taken hold which is a good thing but it also makes coming up with a diagnosis difficult.  Keep a symptom diary and see if some pattern emerges there.  write down everything even if it seems unrelated in rheumatology even the smallest things may lead to a diagnosis I have this jar opener that mounts under the kitchen cabinet. I got it from The Pamered Chef. Their really inexpensive and they are really handy for opening all kids of jars and bottles with twist top lids. Yes, my DIL sent me an opener from the Pampered Chef.  It's white but doesn't mount.  It's wonderful.  You just grab the lip of the lid a little and it releases the vacuum.   The jar is super easy to open after that vacuum seal is gone.  And it's cheap!  It sounds like you are in a similar situation:  My rd calls it "undifferentiated polyarthritis" even though I have (1) stiffness that lasts for an hour + in AM and following rest periods--actually it continues to some degree all day, (2) more than 3 typical joints involved symmetrically --fingers, wrists, elbows, knees, ankles and feet,(3) positive RF at 35 (anti-CCP negative at only 3) -- but, I am 65, and he says older folks are frequently positive, so doesn't mean much, (5) dull joint achiness has lasted way over 6 months, (4) history of intermittent finger and ankle swelling sometimes years apart, carpel tunnel surgery on both wrist years ago, and recently 5-6 wks of good improvement in pain level with low dose intermuscular injection of predisone which rd gave me himself.  He has yet to do any xrays or suggest any other imaging, although I am sure there is some OA involvement.  I have "significant osteoporosis" according to my PCP's tests. The clincher is that I do not have swelling that the rd has felt or seen.   Therefore, he is not calling it RA.  But after doing research on the internet, I am convienced that it is probably mild RA since I don't have any other symptoms specific to other common symmetrical diseases.  Then, the question becomes, do I really need an DMARD?  Curently, he is in a wait and see mode.   I sure can understand your frustration to not have and answer.  [QUOTE=Jesse88] You sound like you may have what I have...undifferentiated connective tissue disease.  I don't know enough about blood work to comment on your numbers, but I can tell you my blood work suggested RA and lupus in one set, but other tests were less conclusive or negative.  I also don't have any inflammation but had joint pain that wasn't always the same on both sides and I was missing other classic RA/lupus signs.  In short, there was no clear indication of what it is but it's definitely a connective tissue illness.   My RD said something similar in that he wanted to keep it from becoming full-blown anything and because I was having neuropathy issues, he started an aggressive treatment program.  He didn't even ask me, just said it was what we should do.  If you're having a lot of joint pain and have a nodule already, I'm a little disturbed that your doctor isn't treating it before you sustain damage.  That comment about the prednisone bothers me too.  If she didn't think it was a good idea, why did she offer it?  And shouldn't she be giving you more guidance?  It seems to me she's letting you make the decision when she's the one who has the medical knowledge to make the best call.  Now, I'm just going by what you've told us about "jumping off a cliff."  Since you're having joint pain and aches, it seems you're more likely to go full blown than not.  I agree that prednisone would not be the way to start, but it sounds like you need to be treated with something to make sure you don't fall off that cliff.  Please get a second opinion.  [/QUOTE]

I am in your same situation. My bloodwork is inconclusive, so I am labeled as inflammatory polyarthritis. My RD used predisone as a diagnostic tool also. Although getting off was difficult, it provided much needed relief at the time.My RD prescibed mtx for me today. Will give me a biologic if i decide i want that. He never actually said the word RA yet. He really isn't finished running all of the test. Well everything but the bone density test. So i will not have my offical dx till next month. Doctors can be confusing. 10 days ago he said well that could be bla, bla, bla. LOL I said ok then treat me for that. He did a complete turn around when i said that. Then he was trying to convince me it was probably RA that he just wanted to run more test. The whole matter is just confusing. I believe to some extent we are all confused. Surely you have noticed.Hi Icarter-- Hi CdnDream,

I'm not sure what province you're in, but you might want to check out your local office of the Arthritis Society of Canada (http://www.arthritis.ca/splash/default.asp?s=1).  In Ontario they provide free physiotherapy, counseling with an occupational health therapist, courses, discounted braces, and more.  The physios are experienced in assessing for RA and may be able to give you some more insight.  I was referred to my rheumatologist by my physio and fast-tracked in for my first appointment based on my physio's assessment.

I hope you find the answers you need soon.

All the best,
Joy

I haven't read all of this thread.. I think I read that you're having an MRI soon, that should solve things for you. It maed the difference in my diagnosis because I have sero-negative RA. Don't beat yourself up for being confused, I've been diagnosed for over a year and still have a hard time getting my head around this diagnosis. I'm sure your doctor will be in touch with you after the MRI, write down any questions you'd like answered. If you're like me there's always something I forget to ask if I don't write it down.
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