Suspected for early RA

[Shila36]

Hi all,

I haven't been around for about 9 months, since the doctors said I don't have RA and my symptoms of severe joints pain will never come back.

Well, surprise surprise, they were wrong and it started coming back a few weeks ago. And I'm now facing the same MRI, x-rays and blood tests as before and will probably hear at the end, again, that I don't have RA or any other chronic disease and it's only low levels of information induced by stress.

Although there's still a small part of me hopping that they're right, I mostly believe this is early RA. I just don't see any other logical explanation from all the possible diagnoses out there.

I was wondering if for any of you the RA started in the same low levels, with a lot of pain, but, no visible inflammation. The pain is also fluctuating a lot, starts in some joints for 2-3 days and then moves to others. I was taking NASDAs for two weeks from the moment the flare started and then been resting a lot for almost two weeks, and I think it's now getting under control and it's close to be over. Does that sound like a very moderate flare of RA? I got pretty quick to the rheumi this time and he did ultrasound to the most painful joint, he found the exact point of pain in a small joint in my shoulder, but, he showed me there was no sign of inflammation there. The pain started only two days before, so I'm not sure what can be seen in ultrasound after 2 days. But, his conclusion was that I have no inflammation in any of my joints and he believes it's something else, hence, all the redo of the tests I did last year.

I would be very interested to know if that sounds familiar to any of you. I'm pretty frustrated from not knowing what I have and be in the same situation again after less than a year...

[Lucy11]

Hi Shila,

Like you I hope they’re right and you don’t have RA now and you wont develop it in the future, but then you’re still left with the angst and worry of what’s happening to you—horrible position to be in. Sorry.

The following cohort may help you understand why they feel you don’t have RA and why they feel it’s unlikely that you will develop it later.

Basically the study says that if they utilize ultra sound and don’t find any synovitis (inflammation) present then there is an 89% chance of not having RA or developing it in the future.

This may or may not be what you’re looking for but perhaps it helps you understand why the doctors rule RA out?

Personally, although I had almost no signs of visual swelling and had no raised inflammatory markers I did have loads of synovitis on my ultrasound.

medpagetoday.com/Rheumatolo...

I hope you get to the bottom of what’s going on soon.

Lucy.

[Shila36 in reply to Lucy11]

Thanks Lucy,

That's very helpful. I hope they will find what I do have soon...

[BubbleMonkey]

Hi. I've been getting pretty mild aches and pains for a few months now. They aren't too intrusive most of the time, but I was worried it was the start of something or a sign of something more significant happening out of sight so I nagged my GP for a rheumy referral (I already have one AI issue and some other odd symptoms so I suspected AI involvement).

I was really worried I'd be told I was fine and to stop whining since it's pretty much what happens most of the time when I bring up issues with my GP and I don't have any swelling or stiffness with my pains.

Well lucky me my rheumy did believe me and had an answer for it too. I apparently have palindromic rheumatism which is a bit like RA (it is technically a form of inflammatory arthritis), but the pains are more random and there is no damage and it's very difficult to test for. It's also apparently common to not have any inflammation or stiffness with it.

basically it's phantom pains that people probably won't believe you have- me to a T.

So yeah it's totally possible to have something on the RA spectrum without a lot of the tell tale signs. Might be worth looking into and asking about regarding your issues.

[Seenie]

Shila do you have any skin issues? If not, are there any close relatives with skin issues?

[Shila36 in reply to Seenie]

Hi,

No, no known skin issues... it would have made the diagnosis much easier, of course.

I have an appointment with the rheumatologist again on Tuesday, then I'll hear all the test results and maybe he'll have a good idea what it is...

[Seenie in reply to Shila36]

Darn. Shila, crazy isn't it, to want a disease so that you can start feeling better. Well no, not the disease, but the diagnosis.

Fingers crossed for you!

[Jules13]

Mine was all inflammation and pain in my wrists. What about blood tests? Have they done your ESR AND CRP? That's the first RA blood test they do.

[Shila36]

Well, most blood tests results came back today. All normal, except the anti-CCP, it's 25, slight increase than last year. My vitamin D is still low, crossing my fingers that might be the problem, as some of the doctors have mentioned. But, if that's the case, I'm wondering why the pain focuses only in my joints...

[ieva406]

Hi, Shila! I am in a very similar situation as yours. Your posts are pretty old, has anything changed regarding your health condition/diagnosis?

[Shila36]

Hi Ieva,

I was diagnosed with fibromyalgia about a year ago. With more targeted treatment to muscles instead of joints I was able to return to full functionality in the last year. No one knows if I might develop other conditions in the future, so as part of my treatment I’m exercising 3 times a week (very moderately), and hopefully it will help prevent or delay any potential joints related disease in the future.

Hope this helps you.

For me the pain always focused in the joints, until one rheumatologist thought about examine my muscles and he was very right.

[ieva406]

Happy to hear that you were able to get back to full functionality! All the best for your health!

[Shila36 in reply to ieva406]

Updating, thought you might be interested. I was diagnosed yesterday with seronegative RA

Started treatment with Methotrexate. It took 3 years for the doctors to get to diagnosis. I recommend finding a doctor that specializes in early detection of RA.

Fortunately my x-rays still look normal, so no real harm was done by the late diagnosis. Except for the years of pain and frustration...

[ieva406 in reply to Shila36]

Hi Shila! Was wondering how you have been doing lately after your RA diagnosis?

[Shila36 in reply to ieva406]

Hi,

I’m doing better, thanks!

I’m still trying to find the right medication, switched to Arava a few weeks ago and it’s much better for me than MTX.

[dembonesDAMNBONES]

OA, RA, FM, Lupus, eerie the way the symptoms cross over, leaving so much room for error, so we end up, initially, misdiagnosed.

I'm pretty much a newbie here, but welcome back, in a sort of nice way!

I'm sure you'd have been much happier with just the FM complicating your life.

[Shila36]

Thanks

Yes, I was “happy” with my FM diagnosis, except of course for the pain that had no treatment. I hope at least now I’ll have the chance of getting my life back once I’ll find the right treatment.

I’ve started yesterday with 10mg MTX, so far it’s not as bad as I’ve expected, but I did take a strong anti-nausea pill in order to be able to sleep. So that probably helped. This morning I just feel very hungover like others described. I hope it won’t be like that every time.