Looking for your thoughts. One of the hardest things about having an autoimmune disease is getting validation for your symptoms because most people donít see what is wrong with you on the inside; so it means a lot to me and I continue to look for it. In 1999 is when things started and by 2001 I had severe problems with my right eye that turned out to be Scleritis. Seven eye doctors for two years and damage to my right eye until I was able to find the right doctor that recognized what was going on. I didnít get a DX of RA until 2009 but I still hear comments from the physician assistant that Iím seronegative and that my blood tests donít show RA. Since 2009 my CRP has continually been high but no RF markers. When I asked why my hips, back, neck and shoulders hurt sooooo bad, she told me that it was bursitis and I believed her. In reading about RA/Immune disease, it says that the immune system attacks the synovial jointsÖ.those joints are in the hips, back, neck and shoulders. Oh wellÖI donít want to get in an argument with her. My fatigue has been just horrible since all of this started in 1999, along with swelling of joints and pain in all of the synovial joints...but for some people, that's just not enough to get diagnosed.
I got a copy of my records from the doctor that I was seeing in 1999-2005 to look over the labs and doctor notes and I was surprised to see that several labs came back with positive ANA, high ESR and c-reactive protein (this was extremely high) rates, along with the notes from the doctor describing my symptoms of constant severe fatigue, joint pain, along with the diagnosis and treatment of the Scleritis.
Before I ask my rheumy (I wonít see the PA) would you agree that the ANA along with the high ESR and C-reactive protein validate my diagnosis as far back as 1999 when the results came back? My doctor at that time never mentioned those results....he concentrated on my liver count which was extremely high too. I think that most of you understand why itís just so important that I hear that from my rheumy but I wanted to see what others had to say before I ask him next week.
Does your rheumy think you have RA? Because your symptoms and blood work don't say RA. It sounds a lot more like AS....ankylosing spondylitis or perhaps even lupus.
But let's get a couple of things straight first....ALL joints have synovial linings and that means all joints are liable to get RA and actually, the least liable are the joints of the spine. That is usually OA or one of the sero-negative spondyloarthropathies such as AS. RA, if it attacks the spine, tends to affect the top 2 vertebrae only.
The Rheumatoid Factor as a test is kind of worthless as 25% of those with RA are negative and 5% of the general population are positive without having RA....and that grows to 20%+ in the elderly population. A high ESR and CRP do show inflammation but are not specific to Ra....that happens in many forms of inflammation. But the ANA is quite specific and not for Ra. A positive ANA usually rules out RA, not confirms it.
Both RA and Lupus are diagnosed on the basis of "criteria". They have a list of 7 symptoms for Ra and I think it's 10 for lupus and you have to have a certain number of the symptoms to qualify for the diagnosis and in both, blood work is only one of the criteria. For Ra, the criteria are a positive RF, morning stiffness for at least an hour, arthritis in 3 or more joints, arthritis of the hand joints, symmetric arthritis, rheumatoid nodules and x-ray or MRI confirmation of synovial changes in the joints along with erosions and bony decalcification.
But you also have scleritis and believe it or not, that can accompany the disorders that hit the spine and large joints in AS and in Reactive Arthritis. RA tends to have uveitis instead.
I think what you need to do is keep working with your rheumy to figure out what it is you have. None of these disorders is diagnosed very fast...takes time to watch it develop and then figure out what it is. But it is so important to know what it is because the new drugs can make a huge difference. These new biologics can be lifesavers but they can also kill. You have to have a good diagnosis.
My rheumy was treating me for severe OA for years and years when some strange things began to happen and over a period of 2 1/2 years, he watched and tested and finally nailed down that I had RA on top of the OA with an MRI of my wrist. That is how they do it...watch and test and put together a picture of what is going on inside of you. And they can do tests to help rule out other disorders....I didn't have a consistently positive ANA so no lupus; I had an MRI of my sarco-iliac joints of my pelvis and that ruled out AS or ReA(no syndesmophytes); and he did many other tests but the one disease he couldn't rule out was RA and eventually, decided that RA was the diagnosis. So they try to rule out and rule in as a way to figuring it out as so many cross over each other.
And just because you have one auto-immune disorder doesn't mean you can't have bad osteoarthritis on top of it affecting the spine, hips and shoulders. I've had 23 orthopedic surgeries to fix joints destroyed by OA.....including 2 major spine surgeries for my neck with a probably 3rd coming soon.....and not a single surgery for RA. My entire lumbar spine is disintegrating due to OA and I'm just biding my time waiting for the entire lumbar to be fixed rather than doing it bit by bit(neurosurgeon's advice). So even though I have an auto-immune disorder, plain old OA is what is destroying my body.
I'd keep working with the doc and the PA. If the PA is skeptical, she has reason to be....and you may have something different but with similar symptoms....but the drugs for the disorder may be different so that is where they need answers. When you have an auto-immune disorder known as "the great pretender"(lupus) then you know how difficult this can be. They can all start to look alike.
Yes, I was diagnosed in 2009 with rheumatoid arthritis and at that time he based it on all of the markers (symmetrical joint inflammation, pain, stiffness and fatigue, morning being much worse lasting for over an hour, ect.) going back to 1999 and accept my RF factor, so Iím seronegative. But seeing the blood tests from 1999 that should have alerted my primary at that time, is just hard to takeÖ.treatment would have been a blessing if it had started back then. My diagnosis of Scleritis just helped my new rheumy to confirm. As with most people that are seronegative, I donít have the joint damage or nodules but I have changes in my hands that are beginning to show some ulnar drift. Itís a good reminder to all that you must always ask for copies of all labs and learn to read them.
Iíve been on MTX since 2009 and added Humira in April of this year; which it has helped a lot to control flares. I was on Plaquenil last year, but it caused a lot of stomach pain. Iím not free of the pain, fatigue and stiffness, but itís improved and I now have more good days than bad. I take Etodolac for the pain from the inflammation and it works really well. Iím also on Restasis for the chronic dry eye and seeing an ophthalmologist who is an ocular immunologist to keep an eye on the Scleritis.
The PA for my rheumy is the one that is always just all over the board and itís hard to understand why she would say that hip pain is not related to RA when it is, but I didnít want to argue that with her. The rheumy confirmed all of that and I would take his word over hers. But again, itís up to us to try and find answers. My flares also involve the spine, neck and lower back but it was intense enough that I had to go to the ER and I saw an orthopedic surgeon that explained that the pain is caused by inflammation of the synovial joints in the spine and they flare the same as the other joints like knees, ankles, hands, etc. He ruled out ankylosing spondylitis. At least Iím on the right medications if it was, but for now Iím just glad that when I have a bad flare that the Etodolac helps.
On their own the ANA, ESR and CRP results are not used to make a diagnosis, but given the rest of the symptoms, it should have been the focus of my primary at that time. I know that there are lots of people out there that are just like me and its taken years and years to find a doctor that takes the time and has the skill to make a proper diagnosis. Thatís what I meant by validation; that we are screaming out for help but with most autoimmune disorders, itís very difficult for many of us to get the help that we need. I guess that the validation is more for me because so many friends and family members just donít understand what is wrong and are so quick to dismiss the disease and it seems like Iím asking for it again.
Itís also a good reminder that we need to always ask for copies of our labs and read them for ourselves and not always rely on the doctor.
I'm glad you're on MTX and Humira. I've been on MTX and Orencia for over 3 years and it has made a huge difference. But I've had my ANA go positive now and then and now have secondary Sjogrens(Restasis and tons of drops) but my doc is actually concerned that I may be developing a third form of an auto-immune disorder with the ANA and some others that will start to go positive and then go back negative. I am also sero-negative Ra but have the high ESR and CRP and white blood cell count and anemia that is resistant to treatment.
I guess that was what I was alluding to....that we are prone to more than one and any blood test that is out of the norm should be a sign that something more may be developing. But I still have more OA than RA. And here is how bizarre RA can be.....I had both knees replaced due to OA and last year ended up in the hospital with red swollen knees that they thought might be infected.....turned out to be Ra in both replaced knees. The surgeon never did a synovectomy when he replaced my knees as I didn't have Ra then. When he does a revision, he'll remove the synovium(but it will grow back). So I have Ra in knees that don't have knee joints.
But I have learned how to tell if it's RA or OA that is flaring....RA has a "heat factor" that OA doesn't. If the pain is hot and feels like something is eating the bones, then it's Ra. If it just hurts and aches, then it's OA. But now there is a 3rd type of pain and my doc thought it might be gout but I don't think so....all tests have come back negative including the crystals. So what is it? Sjogren's arthritis? Or something different? Lupus? No one knows.
Do you find that your RA meds help with your dry eyes and scleritis? Orencia helps the uveitis but not the dry eyes or dry mouth or throat or everywhere else. They flare separately too. But what is #3?
Thanks Jen....this is a very frustrating disease. Getting answers and being heard is just part of the problem, combine that with the meds and it can take years to get on the road to attempting to feel better.
The MTX did help a little with the dry eyes, but I continued to have problems even when it started to help with the inflammation and pain. But the Ristasis has been very helpful.
In my case the Humira is working because I stopped taking it a couple of months ago and I was hit with a non-stop flare which helped to remind me that medications do help and I just had to come to terms with that; given all of the possible side effects.