Again, I'm just a dumb patient, but for what it's worth, your swollen fingers do not sound like the typical swelling in limited ssc, nor does the shiny skin, but you should def have the wrinkles around your mouth looked at as even they, in a certain pattern, can point in one direction or another. In sclero, the swelling is always bilateral and never goes down. Yes, VeeJ, Raynaud's can appear in a myriad of autoimmune diseases and also as a stand alone. Boxermama, was a nailfold capillaroscopy done when you were diagnosed with Raynaud's? If not, I'd want that done too, as that one simple test can help rule things in or out or point in a particular direction. Umm, as far as ANA patterns go, and because I do have limited systemic sclero, I read a lot of medical journals and abstracts, plus I have acquaintences in the sclero community who also keep up on that sort of thing. Sorry for the randomness, but I keep wanting to address things . I had early menopuse at age 38, so I got the sweating and hot flushes without suspecting I was going through perimenopause at all, until I was all the way thru meno. And if you DO have a lot of telangiastias, by all means, let the Dr. see them. My chest is permanently red from them all and I even have them on my lips. And yes, UCTD is different than MCTD which I also gather requires anti-RNP. UCTD is more like an undeveloped cross between lupus and sclero. I also know that antibody panels very specific to the various types of systemic sclero can be run now. I have to admit that I was very lucky in that my rheumatologist is great and treated me with respect and compassion right from the start and I have never had to switch Dr's or anything. GP's on the other hand, not so much in the beginning. Any way, I was thinking of you and Angelaaljr and hope you both are doing as well as can be expected.
The Following User Says Thank You to luca689 For This Useful Post: Boxermama (12-05-2012)
Boxermama, re: your colonoscopy findings, did your doctors say what's causing the "fairly large patch" of inflamed lining that's expanding? Isn't that of significance? Bye, Vee
Back from Rheumy and repeat blood work has same ana and pattern but white count is back to normal range so she said that is a good sign. The only things out of line were low C3 and alkaline phosphate, which she said she is not concerned with.
She said facial flushing sometimes happens as does the telangesticas. So she is calling UMCTD for now. She said there may be something "cooking". We discussed placquenil but I am thinking to not take any medication unless things get worse; right now I'm tired and achey but it's bearable. I know the fatigue could be from the pain but I just have a feeling about not taking medication.
Interestingly, my SIL works for an internist and asked him to take a look at my bloodwork. He did and he said his thought would be MCTD family but that I am very anemic and that may be why I feel so exhausted. My iron counts are always out of the normal range(low) because I have thallassemia trait and most doctors don't know where it should be so they just ignore all that shows up in the out of range there. This may be another reason to check with Rheumies from teaching hospital, I thing they may pursue to see where normal for me should be - I think.
Vee - gastro issue was thought to be worse because I was not careful with food or stress. I am a crazy coffee drinker, not black anymore but I can't find any substitute so I really lighted it up. I know, still not good though. Also on that stress note, do you feel that stress makes your AI issues worse?
Do you see a therapist? Just something that my mom thought might help. My old pcp always told me I had anxiety issues and that was the shortness of breath and chest tightening, I'm really not convinced, but I am a control freak!
Boxermama, even if you don't want Plaquenil now, I hope you'll do yourself a small favor: look into it, write down its many benefits, get your arms around the eye concern (which is extremely low-odds, btw), and keep your notes in a file you could consult. I found the most comprehensive (and reassuring) info on Plaquenil in a lupus hardcover. (The lupus board has a "sticky post" on reading resources.) Plaquenil is considered a safe drug, and it's steroid-sparing. I consider myself very fortunate not to have needed stronger meds (steroids and immune suppressants).
About your colonscopy findings, those patches of inflammation worry me because inflammation can cause permanent damage to organ tissue. This is why the more serious GI AI's, like ulcerative colitis & Crohn's, are called INFLAMMATORY bowel disease: the word "inflammatory" distinguishes them from more "benign" GI conditions. I hope you double-check your findings.
My GI tests didn't find inflammation, but even without inflammation, I was miserable for 20+ yrs. Just a few days ago in an article, I saw two forms of colitis described that are common in AI's: Collagenous colitis and Lymphocytic colitis. Nearly fell off my chair! This AI-GI connection may explain why Plaquenil quelled my longstanding GI problem (among other things). i.e., if your problem is AI-driven, if you quell AI activity, you may quell the problem.
STRESS. No, I never bought the theory my doctors peddled. Yes, I was stressed, but I see that as the effect of my health issues, not the cause. Years into my problems, I tried a therapist. Laughably, I paid a whole lot of money for a year, becoming enraged when she went all Freudian on me, and finally one day bellowed, "My #1 problem is DOCTORS!" I'd never articulated that, so it was rather funny, I suppose...? I resumed working on my problems, and 3.5 years later got the help I needed (dx of lupus, treated by Plaquenil, OTC's, vitamin supplements, and sun avoidance).
Yes, I had anxiety attacks and sudden breathing problems (tightness & gasping). These appalled me because I'd been the little kid who rode the roller coaster five times running, etc. Interestingly, anxiety attacks are listed in the "alternative criteria" for lupus (those are in a sticky post on the lupus board.) I also read that lupus can disrupt the autonomic nervous system, causing breathing irregularities, racing heart, etc. My anxiety episodes stopped cold; and I find this meaningful b/c these years were very tough emotionally (lost my parents and two of my closest friends, and my husband had his first serious health hits).
Yep, Luca's immediate focus on UCTD/MCTD was/is pretty shrewd indeed!
I'd love you to do these favors for yourself: read up but include Plaquenil, and double-check your colonscopy findings. I'd REALLY HATE IT if your problems worsened for not weighing carefully the opportunity your doctor just offered. Let us know how you're doing & what you're finding in your studies. We want you to feel your best. Sending hugs, Vee
The Following User Says Thank You to VeeJ For This Useful Post: Boxermama (12-06-2012)
I agree with VeeJ that you should read up and include Plaquenil in that. When I was first diagnosed, I was put on it and it, for me, really helped with the fatigue. It took a while but I am so glad I was prescribed it. It was a few years later that the more toxic drugs were added for me. I never really bought into the "stress" thing either, but then I never got any anxiety attacks, (even when my PCP told me that it was all in my head and that I was anxious - what a jerk!) but they are not associated with sclero, either. Def follow up on those inflammatory patches and get those under control. I had an upper GI immediately on diagnosis because of GERD (which IS part of sclero) and went on preventative medication against further damage. That, too, was a game changer for me. I felt a whole lot better! I had to weigh the side effects (possible osteoporosis) versus the benefits (saving my eosophagus) and carefully consider my Dr's advice. Oh, I did want to point out that you should be carefull when reading up and doing research because often times all you find are worst case scenarios, or mis-information, and down right scams designed to play on your fears. Keep us posted and as always, wishing you the best.
The Following User Says Thank You to luca689 For This Useful Post: Boxermama (12-06-2012)
Boxermama, in post #23, you mentioned alkaline phosphate. Was it high or low, and what might each suggest? You should add to your To Do list.
I know, your list keeps expanding. But that really is the best way to get your arms around this & to sense whether you're getting appropriate medical input. (I didn't ask the right things, I didn't know any better, plus my worst years were mostly pre-internet. You have better avenues now, luckily.)
I've read that the C3 and C4 serum complements can depress in lupus, I'm not sure about MCTD/UCTD, but it kind of feels possible b/c those are "crossover close cousins"? Maybe someone else has insight?
I'm glad you found us. Please keep at it & touch base when you can. Bye, Vee
I can only speak to the sclero side of UCTD, but my understanding is that complement does not drop in sclero, usually but not always. In fact, mine is usually high. I believe that complement levels in lupus are lower than in MCTD. I also think that lupus specific and sclero specific antibodies are absent in MCTD. I don't know about the ANA patterns, but the specific antibodies, like anti-DSDNA and anticentromere and the like. UCTD also can have low complement levels.
. I had early menopuse at age 38, so I got the sweating and hot flushes without suspecting I was going through perimenopause at all, until I was all the way thru meno. And if you DO have a lot of telangiastias, by all means, let the Dr. see them. My chest is permanently red from them all and I even have them on my lips. And yes, UCTD is different than MCTD which I also gather requires anti-RNP. UCTD is more like an undeveloped cross between lupus and sclero. I also know that antibody panels very specific to the various types of systemic sclero can be run now. I have to admit that I was very lucky in that my rheumatologist is great and treated me with respect and compassion right from the start and I have never had to switch Dr's or anything. GP's on the other hand, not so much in the beginning. Any way, I was thinking of you and Angelaaljr and hope you both are doing as well as can be expected.
