Every experience is different, but when I first had symptoms I woke up that day and every day since then with stiff, painful finger joints and overall stiffness. For me, there was not 'some joint pain' but really bad, stiff joints all over my body every day and even during the day when I sat still for more than 20 minutes. For me, it came on suddenly like night and day.

Have you seen a rheumatologist with all these sub specialists? Who ordered the CCP? If your PCM ordered it, he/she should be prepared to interpret or send you to someone who can.

Call your PCM again and request a referral to a rheumatologist.

Lab results can be helpful but are not always positive. Everyone has a different way they have presented -- you will see many stories on this forum. I have seronegative RA (neg RF and anti-CCP but I have classic symmetrical small joint pain and edema). Fatigue was not a big problem for me, though it is for many people.

The rheum will put together the pieces of the puzzle with all your symptoms. Keep a detailed diary of symptoms - which joints are involved, how long are you having morning stiffness, timing and duration of pain, etc. It's best to keep a diary because for some people the pain/stiffness varies with each day even. It's hard to keep all that straight when in an appointment.

Good luck, welcome to the group, and keep us all informed of your progress.

If you have symptoms and the first doctor is not paying attention, get a second or third opinion. I had to seek 4 doctors, because all my blood tests were normal, despite terrible flares and being unable to care for myself. After that, I was undermedicated for another 5 years. It was a long 7 years, and because the disease was not hit hard in the beginning, I now have ultra severe RA. My rheumatologist says my body just destroys the various drugs, and finding a combo that works has been a two year process.

Here is a good article to read on the subject of the importance of early treatment.

https://www.rheumatoidarthritis.org/ra/symptoms/progression/

Also ask about sero-negative RA. It means your blood work will basically be negative. They used to think that meant mild RA, but that is totally untrue. I always tell people to push for early and aggressive treatment, so they don't end up like me!

when is your next scheduled visit with your rheum? I assume there is a follow up to discuss in person? Maybe he or she will proceed in additional manner. I had MRI's of my wrists at diagnosis of RA (erosions) and I also had a huge big burst of prednisone which "cured me."

Maybe patient and doctor have just not hit your stride yet? - when you say "doctor" you mean rheumtologist and not primary care?

depotblue

Hello Everyone,

Thank you all for such wonderful information. I'm new at this and all of this information is so great.

So I went to the rheumatologist is what I meant by "doctor".

I spoke to the nurse practitioner today and she said that since it was only mildly elevated that maybe it's not RA. Also she said usually with RA, the doc can't tell the difference between the wrists and the hands. Since my joints didn't have a lot of swelling then she wasn't concerned.

However, I've had a low grade fever for more than 4 months and I've been to so many specialists and still no clear answers.

So, I insisted they do more testing. So she said we can do X-rays on your hands and feet.

Again, my RF was negative but my CCP ANTIBODY was 29 which is a weak positive and I have a little joint pain, wasn't in my fingers and morning stiffness in my feet.

She ordered an X-RAY, is this the imaging of choice for RA??

I had to push for her to order imaging. Otherwise she kept telling me your CCP was only mildly elevated. Please advice me

Has anyone ever started of with a low grade fever or had a low grade fever during a flare?

Swelling of the small joints (like the fingers, wrist or toes) can be difficult. Sometimes they do not "look" swollen, but a rheumatologist knows how to palpate the joints and feel a boggy-ness. Ultrasound of the joints can also show some signs of synovitis in these joints.

Plain x-rays are sometimes done to look for other changes that may explain the pain...like narrow joint space seen in osteoarthritis. Or also can see later RA changes like bone deterioration/destruction. But MRI is better at showing RA changes, even some very early signs before there are obvious signs of damage, which of course is preferable.

Have you had other labs? ESR or CRP? Those are not always elevated. But they are often checked as part of the work-up and sometimes periodically through treatment.

My CCP is normal. My RF is normal. I have not had fever.

I thinking having X-ray done is vital in the beginning, simply because it gives you a baseline to look at. My feet deteriorated rapidly at first. I actually have one of the earlier X-rays, and it makes me sad to think that my doctor didn't treat me more aggressively looking at those X-rays. Besides severe deformities in my right foot, the feet and hands were covered with what looked like shiny ball bearings. I asked the orthopaedic surgeon what they were, and he said "RA nodules." The goal is to get rid of those in treatment and yet my rheumatologist let that continue for 5 years till I complained.

And yes, X-rays are just fine. You don't need an MRI for this non-specific view of your joints and possible erosions. If they come back negative for erosions, I would still see if you can get a copy, as it might reveal a lot in a future comparison to where you are at.

I would not worry about that number, if your symptoms are not bad. My sister had a much higher CRP that me for years, when I was bed bound. She gardening about 8 hours a day, then spent the remaining 2 hours of free time playing competitive tennis. Totally out of my league. She just saw a rheumatologist, and it was determined she has Sjogren's syndrome. She is very worried about that. I told I have had it for as long as I have RA, and other than keeping eye drops in your eyes, and keeping your teeth clean, there is not much you can do about it. There is a pill you can take, but as it increases the amount you perspire, I was not going to go that route, especially after a 2 year bout of serious prednisone sweating. LOL

Hi.
Marlenej

Wow thanks for that info. I'm so sorry you went on for 5 years before your rheumatologist did anything about it.

Wishing you and your sister relief and strong health!!

Did you ever have a fever? I'm wondering if there's any association with fever and RA.

I sill ask for a copy of the X-rays.

Hi, doodlebug25

I did have so many other labs. It the ones pertaining to RA, ESR AND CRP were in range but the highest number in the range

How were you diagnosed when your Labs were normal?

Did anyone have a low grade fever with their flares?

it will be good when you get into your MD to discuss in person with the physician.

depot

yazzy23

I have not had fever, but it is sometimes reported in RA patients. And some of those people do have it with flares.

I was diagnosed based on symptoms -- it started rather suddenly with bilateral pain, swelling, and redness of the proximal joints (the PIP joints) of my middle fingers. (LOL - my husband says there is some reason for that). Because I have a fair understanding of arthritis, I knew this was not normal and "classic" RA. Bilateral/symmetrical small joint involvement. My ESR was mildly increased but the CRP and RF (and ANA) were normal. I made an appt with my PCM, and by the time I saw him about 2 weeks later, I had more finger joints and MCP joints (where the fingers meet the hand) involved. I had stiffness in my fingers lasting for hours. I got in to a rheum about a month later, he palpated my finger joints and agreed it was some symmetrical small joint arthritis...and most likely RA since I had no psoriasis or Sjogrens symptoms (I probably did but did not realize excessive tearing is a sign of dry eyes -- I do have the official diagnosis of dry eyes). Psoriatic arthritis can present before the psoriasis, so he always asks about any rash, since that would be the other likely diagnosis. Both are treated essentially the same, but it seems some meds work better for PsA.
He ordered labs at the first visit, and had me try high dose naprosyn for about a month. That did nothing, so (despite a normal anti-CCP), I agreed to try low dose prednisone, with some improvement. Over a period of a few months, I was then on MTX and humira.

My symptoms are very mild compared to many others here. I mainly have pain in fingers, hands, wrists, and shoulders. Nothing else. And though all films and labs normal (or mildly elevated ESR), my goal with my rheum is to prevent damage, and hopefully preserve my hands. In addition to my real job (where I do use my hands a lot), my hobbies involve a lot of use of my hands and fingers.

So my rheum diagnosed me based on symptoms...which is what they should do. IF you have abnormal labs then labs can be helpful (especially when looking at the official diagnostic criteria).

Over

Doodlebug25

I was recently diagnosed with celiac disease. I don't know if there's any correlation with RA.

My main pains are in my wrists, fingers, Knees and elbows. I hope and pray to God it doesn't get worst.

What did the rheumatologist recommend to you? If it's not to personal to ask.

My rheumatologist wants X-rays first. Then I have to go back for a follow up. Is there anything I can do in the mean time.? Which will probably take about a month.

Celiac and RA are similar in that they are both autoimmune disorders, but they also share some genetic markers. It is pretty common for people with one autoimmune disease to get additional diagnoses. You will see that many people on this forum have a list of diagnoses.

The hallmark joints involved in RA are the "small joints" - fingers (particularly the closest of the finger joints - PIP) and the joint where the fingers meet the hand (MCP), and the wrists. The larger joints (hips, shoulders, elbows, knees, and ankles) are not part of the official diagnostic criteria but a lot of people do have involvement. And most patients have symmetrical involvement. Yes, some people have other joints involved.

The course of the disease (IF you have RA) is different for everyone just like the symptoms. Some people here can tell you about many years of the disease, and some with good response to meds and some without. I was only diagnosed just under 3 years ago, so I don't have that much experience . I have had some progression with more joints involved and some decrease in function (like opening jars), but I cannot complain.

Other than the medication plan I outlined in my earlier response, the only other things I had to do were a few things before starting meds (Tb test, extra immunizations - pneumonia vaccine and shingles vaccine), and labs every 3 months (to monitor for side effects). I cannot drink alcohol on MTX (which is no big deal for me). My rheum gave me no other limitations - I think he expects me to be responsible in listening to how I feel but he also trusts my opinion about my joint symptoms. I use my hands a lot and self-limit if I am hurting. I wear compression gloves sometimes (and they sometimes help relieve the pain). I used to be an avid runner, but no longer (that is not from RA), but I still walk regularly and hope my feet don't join the RA party. I limit certain activities that really strain my hands. Other than folate and vitamin D, I don't do any other supplementation or special diet changes. That is my personal preference. I think diet changes may make a lot of people feel better, but I do not feel they should be a substitute for good RA drugs. I get regular massages - but that is for stress mostly - and my massage therapist is more like a physical therapist and very knowledgeable in RA. Many people mention working with an occupational or physical therapist.

While waiting...
Keep a detailed diary of your symptoms -- duration of morning stiffness (in RA is longer than 30 min), which joints are painful/swollen/red/warm. A rheum exam is interesting -- there is a special way they feel the small joints in your fingers to feel for boggy feeling.

Hopefully he will listen to you and explain your labs. If he doesn't, I would look for a second opinion.