My doctor just told me I should see a rheumatologist ASAP. The reason is because my antinuclear antibody test was positive, which is apparently Bad, but my Rheumatoid factor was negative, which is Good. But all this is non-specific enough to not be much help, and she wants me to a) do more blood tests, and b) call around for a rheumatologist, who are apparently difficult to get an appointment with, so she also gave me five doctors to call, and to take the results of both blood tests to that doctor promptly.
What prompted all this is I started having very bad muscle pain this past week, along with some nagging joint pain for quite some time. I take Lipitor, so when the muscle pain started and kept up, I called the doc, and we both thought the Lipitor was the problem, so she told me to stop taking Lipitor right away, and go get that first blood test I mentioned above. I do not know what tests were actually done, I will get a copy of the tests on Monday. I also do not yet know what tests will be done on Monday.
Since it’s Friday evening where I am, I can’t find out more until Monday, or probably until I see that rheumatologist. So I’m going to try not to fret, but jeez… a possible autoimmune disorder in my body, which could be one of several things, many of them debilitating to some degree. Goddammit, I play guitar; there are not many arthritic guitar players! And I have to fret if I play guitar [/pun].
I’ve got gout, so yeah, I’ve got a rheumatologist. He’s the “bad cop” who always rags on me for my unhealthy lifestyle. He’s one of those completely healthy freaks who probably runs marathons. He actually dispenses extremely sensible advice. My primary care doctor is the “good cop” who tries to gently push me into living healthier.
A positive ANA by itself isn’t a sign of much of anything. So don’t panic.
Did your blood tests include a CPK level? That’s an easy way to see if the muscles are truly inflamed, as they would be if the pain was caused by lipitor or similar agents.
That’s good to know. My doctor said as much: it just meant I need more tests to determine what this means. I’m surprised she sent me immediately to a Rheumatologist, but I suppose anything outside “it may be some autoimmune thing” is outside her expertise. ?
I will find out on Monday; my doctor ordered the first test basically because of suspicion of Lipitor being the cause my muscle pain, so I expect that she included this, but I didn’t know enough to ask that specific question. My muscles sure as heck feel inflamed, mostly from shoulder to wrist, and my hands have been swelling up as well. All of which is consistent with Lipitor issues AFAIK, but I guess we’ll see.
I was diagnosed with rheumatoid arthritis in 1987. Fortunately, I was diagnosed early and responded well to the medications of the day, but I still had problems. My current doc is very aggressive in treatment because he believes in quality of life, and he got me in as a guinea pig for the Humira studies. I’ve been on Humira since and it is an absolute wonder drug as far as I am concerned.
I’ve been seeing a rheumatologist regularly since I was diagnosed with Ankylosing Spondylitis two years ago. Of all the doctors I see for different things, he is easily the most responsive and the easiest to work with…If I think I need anything, or am having any kind of problem, I call his office and almost always get a response within two hours, by the end of the day at most. And he trusts my judgment most of the time of what I need.
I’m on Remicade and have to watch out for potential infections. Quite recently, I had very good reason to think I had an abscessed tooth. His office called in an Augmentin prescription for me so quickly it would make your head spin - when I couldn’t even get through to my dentist to get an appointment until the weekend was over.
A good rheumatologist is well worth the money if you do have a rheumatic problem.
At the time I was diagnosed, I was working on Kwajalein in the Republic of the Marshall Islands. When I came back, I was living in Angleton but working in Houston. I didn’t physically move back to Houston until 1993, and I started seeing my guy around that time.
Over the years I have been seeing a rheumatologist*…for EYE problems!
Auto-immune disorders come in all shapes and body parts: I thank my rheumatologist (and ophthalmologists) for the fact I can see this computer screen (albeit a little fuzzy in the left eye).
I have the lab results from the first test. Is “Creatine Kinase, Total, Serum” the CPK level ? It was at 252, normal == 24-204.
I just went to Blood Tests R Us (well, LabCorp, but you get the idea) for the new tests, and it was packed, I counted maybe 20 people ahead of me, and nothing to read in the waiting room. I’ll go back mid-morning when its not busy.
I have seen a rheumatologist for psoriatic arthritis (another immune disorder that attacks the joints and tendons) – something that has become more and more problematic for me lately, bordering on disabling. She had me on methotrexate but that was making me nauseous. I stopped taking it, but now I’m stiffening up so much I have a hard time getting out of bed in the morning or bending over to pick up my kids. I need to try something else.
Been seeing one for thirteen years now. I have rheumatoid arthritis, although my “factor test” or whatever has always been negative. I have fibromyalgia, too. Vicodin is my friend, and although I have given up mega-marathons of cross-stitching, I can do anything else pretty well.
I had been having nagging pain in my feet for a few years that went undiagnosed by my GP despite several attempts and visits to non-rheumatologist specialists. When the pain got into my knees, back, shoulders, and neck my GP sent me to a rheumatologist.
I was diagnosed with psoriatic arthitis. So I feel your pain, Dio. I’m on methotrexate and Enbrel. You should talk to your doc about Enbrel or Humira but be warned: without good insurance you’re going to paying a buttload of money for the meds. They’re self-injected bio-engineered proteins that block your immune system’s attack on your joints. Methotrexate was some help, but the Enbrel has made life much more livable, along with diet and exercise.
And keep taking your meds. When my dad died last year I had a number of estate issues to manage and stopped treatment. Big mistake. I’m back in the fold now but I’m not happy and my doc’s not happy with the swelling in my right knee.
I’ve been to a rheumatologist for elevated ANA test plus a low white blood cell count.
I am completely without symptoms of any kind so the various doctors (I’ve been to a hematologist too) can’t figure out why I have a low white blood cell count and a sometimes elevated ANA. They always want to see me back in a year or so. This has been going on for me for 5+ years so I’m not all that concerned. Funny thing is, I rarely get sick, not even the common cold. You’d think with a lowered white blood cell count I’d be picking up every bug around.
Last doc I went to said I could have Lupus that just hasn’t produced symptoms yet. Good times.
Best of luck to you squeegee. Here’s hoping that it was the lipitor all along and not something else. May your guitar playing days be many and fretless.
Those CPK results are consistent with side-effects from lipitor. Not that it proves lipitor actually did it, you understand.
But if I had a patient who had those results and got better after stopping lipitor, I’d blame the lipitor (unless other things were also going on). I probably wouldn’t chase down the ANA further (I rarely order ANAs unless I know what I’m looking for).
Here’s my summary from a paper I presented on ANA testing to about 50 physicians and other health professionals in my state organization a couple years back:
BTW: Lipitor-induced lupus is a theoretically possible, but less-likely diagnosis than the diagnosis of having muscle pains from lipitor and a co-incidentally positive ANA which is positive for no meaningful reason.
Okay, that’s good to know. Thank you. And FYI, the muscle pain is dramatically better since I stopped taking Lipitor on the 23rd. OTOH, my joints and hands etc are still really sore (but in the way they have been for many weeks, where the muscle pain manifested about 10 days ago), so maybe we’re looking at more than one thing, shrug.
FWIW, I have here the lab sheet my family doctor filled out for the next tests. She didn’t mark any of the check-list items, but hand wrote “272ry.” (I think, it’s almost illegible) and “*CK *AST *ALT”. CK is pretty obvious, I wonder what the others are.
