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Telangiectasias and possible scleroderma lung

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Posted 5/13/2008 10:58 PM (GMT 0)
Met new rheumy. he was pretty nice. He suffers from severe aadd. It was kind of cool to be treated by someone who literally couldn't stand still and got up to leave the room a couple of times because he forgot what he was doing. I kow it sounds strange but heck I respect how hard he must have had to work to get where he is today. He seems very knowledgable. but he didn't tell me anything really new.

He said what is on my skin is tangeliatasia. what he thinks I have is possibly scleroderma but it doesn't seem to be at a point where it needs to be watched constantly. I said can I stop taking some of my drugs than? I'm on 24 different ones. He looked at the list and said I could quit taking plaquenil. redface He does suggest I somehow find out for absolutely sure weather my lungs are COPD or scleraderma lung. I have a pcp appt tomorrow and will discuss it with her. I don't know other than I biopsy how to be absolutely sure but I guess I'll find out. anyway it's been a long day so I'm gonna go. I just wanted to let ya know what he had to say.

love ya

carol

Posted 5/13/2008 11:13 PM (GMT 0)
Oh wow!! I wonder how differently that would be treated???? I think sclero shows in some of the bloodwork. Did you order bloods???? I hope this guy gets you turned around sis!! Blessings!
Posted 5/14/2008 12:55 AM (GMT 0)
(((( Carol )))) I sure hope this doctor figures out your problems so that you will start feeling better soon! You've been through so much sis, take it easy and a day at a time. Let us know what your PCP thinks.
Posted 5/14/2008 1:24 AM (GMT 0)
Hi Carol:

Well it sounds like the new Rheumy's not to bad. He had to go through a lot to become a doctor with AADD. I'm sry to hear about the possible scleroderma and the talengiestasias. I wish they'd figure something out that can get you feeling better. Just wanted to wish you good luck with your pcp and I hope this new rheumy figures something out for you. You hang in there Carol please, please don't give up.

Love,
Barb
Posted 5/15/2008 1:47 AM (GMT 0)
Hi Carol--
Hopefully there are some tests they can run besides or instead of doing the biopsy. It would be good for you to find out for sure what is going on there. I'm praying for you. Do you see a pulmonologist? I suppose so. A good one can really help with lung stuff. Hopefully you will have success with the new rheumie. I just found out the other day that the plaquenil is really working well for me, took long enough.
Posted 5/16/2008 1:59 AM (GMT 0)
Carol,

   (((Hugs))) Bless your heart sweetie! I hope they figure out what is going on and get you on the right treatment plan to help you. Please take care and update us when you can. You are in my thoughts and prayers.

                                                         Love, Babs

Posted 5/17/2008 1:07 AM (GMT 0)
Thanks everyone. Rosie, I spoke to my doctor about the scleroderma, She said when my ana came back at 1;2560 with a nucleolar patttern the sl test was one of the first test she ran. It was really low and she said if it was sclero. that it would be in the 1000's. So I am so confused. I don't want a biopsy. It seems like when doctors to exploritory biopsies people get cancer shortly after. Maybe not always but it seem to happen with people I know.
Marji, yeah I have a pulm., but I'm searching for a new one. Not to crazy about the one I got. I'm on some new meds and they don't seem to be working very well.
1 of the meds is brovana and neb treatment for my breathing and it's supposed to work good for headaches. Well it's not I have a splitting headache everyday.
well I just wanted to thank everyone for all their thoughts and prayers
love ya all
carol
Posted 5/17/2008 1:42 AM (GMT 0)
Carol, the new rheumy sounds okay, but I do worry about you stopping the plaquenil. If I remember right, you didn't do so well when you decreased your plaq before. That would really stink if you had scleroderma and it was affecting your lungs. I also wish there was something they could do besides a biopsy. Hang in there Carol. You are in my prayers. Love and hugs, hippi
Posted 5/17/2008 4:12 PM (GMT 0)

Hey Hippi, you're right. I don't do well without plaq. My doctor said I could give it a try. So I am but I'm scared. It's day 3 without it. She also changed my breathing meds. I am really having problems with my breathing now. I left a message with my doctor yesterday that the new meds aren't helping but never got a call back. So I guess I wait until monday. My back hurts sooooo bad! sad

Going back to bed

love ya

carol

Posted 5/18/2008 2:44 AM (GMT 0)
Carol,

I too hope this rheumy gets to the bottom of all this! I've had a bit of a rough week so haven't been on, and am recovering for a migraine but when I read your posts I had to respond and let you know how awful I feel for you. I don't know how scleroderma is treated. Just because your labs were low doesn't mean they still are. Your PCP isn't a reumy, and even though she tested you for it, she doesn't know as much about it as your reumy does. But it sure could explain all the difficulty you have breathing. Keep at it girl, and don't give up till you get the answers you need.

Thinking of you,

(((((Hugs)))))

Pat
Posted 5/19/2008 1:50 AM (GMT 0)
aw, thank you Patty, i'm sorry about the migraines. Boy you sure do have problems with those. I wish the doc would do somthing to help you with them.
You know I was wondering if my lap might have changed. She did the scleraderma lab in 06. I did ask the rheumy if copd could cause a possitive ANA and he said it was a good question but no it can't. So that tells me .....................heck I don't know what it tells me. I've been off the plaq since wenesday and I'm getting a little freaked. out. I'm afraid I'm gonna wake up in the middle of the night and be so sore I can't move.
you take care of yourself my friend
love ya
carol
Posted 7/31/2009 1:34 PM (GMT 0)
Okie, biopsies don't cause cancer! But sometimes biopsies are done when cancer is supected, so of course there are cases when that turns out to be correct.

Biopsies can also confirm or rule out other diagnoses also, such as scleroderma. Just because your test was negative for SCL-70 does not mean you don't have scleroderma. SCL-70 is just one of the antibodies that can contribute to the formation of scleroderma. Anti-centromere antibodies are another. I am negative for SCL-70, but positive for the anticentromere B test, which is supposed to be over 98% specific for CREST scleroderma. And even in CREST, there seem to be two varieties: anticentromere-positive CREST and anticentromere-negative CREST. They say that if you have Anticentromere antibodies, and two of the following, then you have CREST: calcium deposits in the soft tissues, Raynaud's (color changes in the hands or feet with cold temperatures), esophageal dysfunction (food lingering in the lower esophagus, or gastric reflux), sclerodactyly (starts out as ring size changes), or telangiectasias. You have the last one. Do you have any others? If so you have CREST.

I, too, am disturbed at your doc removing you from the plaquenil.
Posted 7/31/2009 1:37 PM (GMT 0)
P.S. Okie, the anti-nucleolar antibodies are highly suggestive of scleroderma. Those showed up in me at least once also. And my ANA test is highly positive like that also.
Posted 7/31/2009 2:27 PM (GMT 0)
okie, I really hope you get some answers.
Posted 7/31/2009 3:23 PM (GMT 0)
Okie, I've done a bit more reading on this, and the SCL-70 antibodies are only positive in 20 to 40% of patients known to have scleroderma. The other antibodies associated with scleroderma include: anticentromere (20-40%), Anti-RNA polymerases (4-20%), anti-B23 (10%), anti-Pm-Scl (2-10%), Anti-U3-RNP (anti-fibrillarin) (8%), anti-U1-RNP (5%), and Anti-Th/To (1-5%). This is from the textbook, "Current Rheumatology Diagnosis & Treatment, by Imboden, Hellmann, and Stone.

If you are positive at all for the SCL-70 antibodies, these are highly specific for scleroderma, so I don't think it requires ultra-high levels for your doc to be taking it seriously. If you are negative for them, my suggestion is to ask for the anticentromere B test. I had to ask for it after many docs had failed to order it. The problem is, it is NOT one of the tests on the ENA panel of tests generally ordered to follow up on a positive ANA test.
Posted 8/6/2009 12:57 AM (GMT 0)
Carol--
I hope you are doing okay. I have had trouble breathing due to COPD when I quit plaq and hopped back on fast, also had sudden fluid retention and heart palpitations. I guess it is doing something. I hope that you are feeling better. I hope all is well with you and your family. I'm rootin' for you!
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