Still undiagnosed, lots of questions

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Date Joined Jun 2015
Total Posts : 1
   Posted 6/16/2015 3:43 PM (GMT -6)   
I just joined this forum and have read quite a few posts already. You seem like a very compassionate, helpful group of people who have suffered much and support each other well.

I know that the road to a clear diagnosis can be long, confusing, and frustrating. I am just beginning this process, and I know everyone is different, but I would love some input from those who've been through this.

So here are some questions....

1. My first set of labs came back with a positive ANA of 1:640, speckled pattern, and elevated ESR and CRP. I was able to get in to see a rheumatologist fairly quickly and he repeated the labs. This time the ANA was positive, speckled, titer of 1:320. ESR and CRP came back within normal ranges. I know each lab tests differently, and results can change over time, but could this difference be due to less inflammation when the second set of labs were done? I was definitely feeling worse when the first set of labs were done.

2. The second set of labs included all the specific antibody tests, but they all came back negative. This, along with my long history of fatigue, muscle and joint pain, and headaches, seem to point to UCTD. If my rheumatologist doesn't mention this possibility at my next appointment (in 3 weeks), should I bring it up to him? I don't want him to think I'm self-diagnosing, but I have read quite a bit because I want to be as informed as I can be.

3. He started me on Plaquenil 2 weeks ago. I have read that it could take months for it to take full effect, but I am already starting to see improvement in the rash on my face (not a butterfly rash), joint pain, and in my energy level as well. Is it possible that it's already helping with these things, or could I just be coming out of a flare? How can you tell the difference? For those of you on Plaquenil, how long did it take before you started noticing a difference?

4. He also mentioned that he thinks I may have fibromyalgia in addition to whatever else is going on. Right now I'm just taking 800 mg Ibuprofen 2 times a day for muscle pain and it seems to calm it down a little, but I am nervous about taking it long term. What has worked for you for muscle pain and tension? Mine is widespread and chronic, but neck and back have always been worse.

Any other tips for me as I navigate the diagnostic process? Thanks in advance for your help!

Forum Moderator

Date Joined May 2005
Total Posts : 7674
   Posted 6/16/2015 4:08 PM (GMT -6)   
1. ANA results are NOT a reflection of inflammation, although we do have blood markers that can tell us about inflammation. As far as I've read in over a decade with Lupus, variations in ANA really are not indicative of anything!

2. UCTD is simply a placeholder for auto-immune disease that has not yet shown itself to be lupus, scleroderma, rheumatoid arthritis, Sjögren's syndrome, myositis, and/or vasculitis. Here is a link that talks more about that. There is really no difference in treatment. Sometimes there are symptoms outside these disease; in that case treatment is per-symptom.

Personally I totally avoid mentioning a diagnosis to the Drs unless they mention it first. I want them thinking as broadly as possible, not to narrow in on what my limited exposure and lack of experience might come up with.

3. You are right, Plaquenil could already be helping some, or you could be coming out of a flare. Unfortunately, we can only guess at which it is; or it could be another reason altogether. Welcome to our mysterious, non-linear disease!! Sometimes after a while of watching how our bodies react to different things we can begin to identify cause/effect, but since it's different for each person there is no established literature or pattern to refer to.

4. My Dr also mention I "might have fibromyalgia, too" years and years ago. For me, and for most of us, I think, it was down there in the noise, like, "you might have a hangnail, too". Anything that might have been fibro was so much less bothersome that Lupus - well, it's never mattered that much. One thing that is of note -- if you are put on prednisone, aches/pains that go away with prednisone are generally associated with auto-immune illness. Prednisone has little or no effect on fibromyalgia symptoms.

General tips -- with auto-immune diseases, don't sweat the diagnosis - these illnesses are tricky and take a while to diagnose. Symptom control and treatment is much more important than diagnosis. (Unless you need dx for insurance/disability reasons.)

Treatments in order of general use - Plaquenil, Prednisone, (Imuran, Cellcept, MTX), Benylsta, and IVIG. Plaquenil to slow disease progression, Prednisone to combat & control inflammation, Imuran, Cellcept, MTX for disease control. Then Benylsta & IVIG if nothing else is helpful.

Let us know what other questions you have!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde
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