newbie in denial? Advice please | Arthritis Information

 

Hi, I am a 39 y/o woman who was diagnosed with RA this summer. I've had knee problems/osteoarthritis for about 2 years (I am a former runner...but still I think i'm too young for all this arthritis). My orthopedic doc referred me to a rheumatologist for chronic pain and stiffness in my shoulders, wrists and hands. The rheumatologist did all the blood work which came back NEGATIVE. He still felt I had RA and put me on plaquenil, which actually helped quite a lot. (I've been on strong anti inflams for years).
Now he tells me that I need to stop my cortisone injections (alternating shoulders and knees every 2 months) which help me enormously...including the stiffness and pain in other joints...because he feels they are masking the symptoms of my RA. He wants to put me on mexo something or other, which I understand is an immune suppressant. I have 7 children, I cannot afford to be suppressed!
He told me that I need to be more 'honest' about my disease. I really like this guy and I think he's a good doctor, but how do I know I have RA? My blood work was negative. I know there is something going on because I used to roll out of bed at 5:30am to run a few miles before I started my day, and now its all I can do to roll out of bed into the shower. But RA?
Thanks for any input you guys have.
LeilaWelcome to the forum. I will bump up a few post from yesterday that may help you understand. Many people with RA do not test positive. I belive Metheltrexate is what your doctor wants to put you on. Hate to break the news to you. Plaqunil is also an immune suppressant. Thats why it is helpful for you. I am afraid this disease will not leave you in denial for to long of a period of time. Glad you found this forum.

Well, why does he think you have RA?  I mean, many people test negative for RF (rheumatoid factor) and still have RA.  It's called  sero-negative.  I think if you're uncomfortable with his diagnosis, especially when he wants to put you on methotrexate, it'd be worthwhile to get a second opinion.  That's what I did.  I mean, I practically ran from the office when they suggested I take a drug like that.  In the end I did plus one more, Enbrel.  I'm glad I did too.  It was the difference between walking and living in a reclining chair.  Even if it turns out you do have RA...it's not the end of the world.   Now that I'm on meds, my life really isn't much different from before RA.  And I was /am pretty active.

Linda Linncn2008-12-08 16:32:37Welcome Leila. RA is not diagnosed on blood values alone. There are other criteria that you must meet to get to that diagnosis. Did you RD do xrays? This is taken from one of many sites you can visit about diagnosing RA.


Revised American Rheumatism Association Criteria for the Classification of Rheumatoid Arthritis (RA)

For classification purposes, a patient is said to have RA if he or she has satisfied at least 4 of the following 7 criteria. Criteria 1 through 4 must have been present for at least 6 weeks. Patients with 2 clinical diagnoses are not excluded. Designation as classic, definite, or probable RA is not to be made.



•     Morning stiffness: Morning stiffness in and around the joints, lasting at least 1 hour before maximal improvement.

•     Arthritis of 3 or more joint areas: At least 3 joint areas simultaneously have had soft tissue swelling or fluid (not bony overgrowth alone) observed by a physician; the 14 possible joint areas are right or left proximal interphalangeal (PIP) joints, metacarpophalangeal (MCP) joints, wrist, elbow, knee, ankle, and metatarsophalangeal (MPT) joints.

•     Arthritis of hand joints: At least I area swollen (as defined above) in a wrist, MCP or PIP joint.

•     Symmetric arthritis: Simultaneous involvement of the same joint areas (see 2 above) on both sides of the body (bilateral involvement of PIPs, MCPs, or MTPs is acceptable without absolute symmetry).

•     Rheumatoid nodules: Subcutaneous nodules, over bony prominences, or extensor surfaces, or in juxta-articular regions, observed by a physician.

•     Serum rheumatoid factor: Demonstration of abnormal amounts of serum rheumatoid factor by any method for which the result has been positive in <5% of normal control subjects.

•     Radiographic changes: Radiographic changes typical of RA on posteroanterior hand and wrist radiographs, which must include erosions or unequivocal bony decalcification localized to or most marked adjacent to the involved joints (osteoarthritis changes alone do not qualify).


Hi,

i am also 39 and was diagnosed last year with "probable" or "evolving" RA.  I also have little kids and cannot stand being sick.

My symptoms were joint pain and fatigue,  the joint pain was not  symmetrical, no morning stiffness, no swollen joints.  Went to see 4 rheumatologists and was told a) I did not have RA to b) I had aggressive RA with significant joint damage.  I've had x-rays, MRI etc.  I chose a Rheumatologist who seemed the most sensible and who gave me the "evolving RA" dx.

My RF is aroud 37 (the RF factor is basically on a scale of 1 to 1000), my sed rate is low, usually under 10 (also on a scale of 1 to 1000-ish), anti-CCP was negative, CRP moderately elevated. 

My Vit D was horribly low, so am working on that.  I'm sure you've read lately that low Vit D can cause all sorts of weird symptoms.  Strange that it was low as I'm a sun worshipper and don't always wear sunscreen...

I chose to go on Minocycline, I do 150mg on Mon, Wed and Friday. 

I also take Turmeric (highly anti-inflammatory) and Fish Oil, as well as Probiotics.  I have to add in Diflucan and Nystatin to control the yeast from the Minocin.  I've always been somewhat prone to yeast. 

Interestingly enough, I notice that when I get yeasty, I get sore.  Very sore.  I now know, I notice the soreness before my tongue gets white!  I actually think that with me that candidasis is part of my problem.  My Rheum does not agree, but I'm convinced there's a link.

I went to see a doctor today, he's a chiropractor, accupuncturist and Chinese Medicine doctor.  He looked at me and told me that I had a uterine deformity (which i do)  - he could tell just by looking at my face.  Anyhow, he was impressed and pleased I was on Turmeric and Fish Oil, and also impressed that I was on Minocin instead of an immune-supressant-Heavy-Hitter.  He immediately wanted to know who my progressive and impressive MD was!

He did a full exam today, including some chinese stuff and his comment was "I don't think you have RA - the body is like a pendulum - there's a safe zone that the pedulum can swing within, and once you get outside of the safe zone, all sorts of strange stuff start up - auto-immune stuff is the first".  He went on to add that modern western medicine has NO clue when it comes to auto-immune, they are still in the dark.  The new heavy hitters only mask problems....

So, I encourage you to trust your intuition - you know your body.  I personally believe that RA symptoms are symptoms and not a disease, BUT it's been labelled as RA - it may as well as been labelled "pork chops" - they really do not know much about RA - even my Rheumy told me that Rheumatology is a bit of voodoo...

Anyway, trust yourself, if you don't want to take a heavy hitter, don't... once you compromise your immune system there's no turning back.  It may be what some people choose, and more power to them, we're each entitled to make decisions that work for us.  Go with your gut.  And get MANY opinions.  I went to see 4 Rheumys at one of the best teaching hospitals in the country as well as one in private practice.  You'll learn a lot.


I have morning stiffness lasting more than 1 hour. Bilateral pain in hands, wrists, shoulders,knees, and lately elbows. I have decreased range of motion in my knees and hands. Before plaquenil I had bilateral swelling in my knuckles and knees. I've not really had much swelling since. That's why my RD diagnosed me with RA. He says he's 99% sure of my diagnosis. I guess I would feel more sure of the diagnosis if I had positive blood work. Maybe I'm just being ridiculous
Thanks for all your input
Leila

You aren't ridiculous.  Not at all.  Leila. It does not matter if you have positive blood work. It sounds like you RD is on target and is being aggressive and by starting you an another DMARD, it will ensure that you will hopefully be in remission sooner. The important thing is that you take the meds and live a healthy lifestyle which includes meds, diet, exercise, stress reduction and anything else that may help you manage this disease. It is not going away so we all have to find ways to live the best we can with it. Good luck and keep us posted on your progress. Your doctor is treating YOU, not you because of blood values. That is a good thing. Yeah...you guys are right. My friend, who has fibromyalgia, told me I was lucky to get a diagnosis. She was in pain for a long time before she got one. I guess I was just trying my "magical thinking"....no positive blood test..no disease...no problem! But then I'd get no plaquenil, no cortisone, no norco, and I wouldn't be functional.
I guess I always pictured myself as such a healthy, capable person. This is kinda hard to accept. Really hard. I know I'm preaching to the choir here. Thanks for your help.
LeilaI remember someone posted the stages of grief for someone newly diagnosed.  I haven't seen it for awhile.  Maybe I can find it.Welcome Leila!
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