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Q Regarding Ana With Centromere Pattern


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#1 tintin

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Posted 26 July 2007 - 02:16 AM

Hi,

This is my first post and I am in the undiagnosed phase, trying to figure out what is going on with me. I had a mildly positive ANA with a centromere pattern 1:160. So far my symptoms are arthritic and numb fingers, Raynaud's, achy hands, feet and joints; and some burning sensations.

I went to the Rheumatologist yesterday who said she thought I might have lupus. This surprised me since I had read that only 1.9% of people with a centromere pattern had lupus. She said she did not think it was lSSc because my fingers were not all puffed up and my skin was not leathery.

So my question is what would someone with early lSSc expect? I don't really see any change in my skin other then a fine tan,red,white speckling on my forearms that looks fairly normal. Is her approach reasonable? How can I get a diagnose that I can feel confident is correct, and does it make any difference in the early stages of lSSc or Lupus?
keep on smiling

crawler

#2 Shelley Ensz

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Posted 26 July 2007 - 06:04 AM

Hi Crawler,

Welcome to Sclero Forums, we are glad you joined us. It's very hard to get a diagnosis of any sort in the early stages of connective tissue disease. There is a lot of overlap of symptoms between lupus and scleroderma, and it is quite common for scleroderma to be initially diagnosed as lupus (although I'm not sure how often the reverse happens.) But lupus is far more common than scleroderma, so by default it is the more likely suspect.

We have a section about Difficult Diagnosis on our main site, which you may find helpful.


Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 tintin

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Posted 26 July 2007 - 09:48 AM

Thanks for the reply Shelly, I am starting to be OK with no not knowing exactly what is going on (something I am not used to). My rummy is leaning towards trying me on Plaquenil, which sounds like what she would do if she was sure I had lSSc anyway. I hope it helps with the aches, pains and fatigue.
keep on smiling

crawler

#4 WestCoast1

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Posted 26 July 2007 - 12:23 PM

Hi there Crawler,
I am glad you posted. I think that the Plaquenil should help with the aches, pains and some of the fatigue. My rheumatologist feels that it tends to do good things for several different autoimmune illnesses. I didn't have any side effects that I can think of when I first started Plaq., but every body is different so it is a good idea to journal your symptoms and discuss them with your doctor.

Let us know how things work out.
*WestCoast*

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#5 jefa

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Posted 26 July 2007 - 01:35 PM

Hi, Crawler and welcome to the ISN Sclero Forums. I tried to answer your post earlier today, but after typing it all out, my system froze and I lost it. What I meant to say has been touched on by Shelley and Erin already. Additionally, here are two other links for you. The first is our page on Autoantibodies in Scleroderma and the second is our page on Systemic Sclerosis: Limited Scleroderma. They should provide you with some of your answers. Keep in mind that ANA results do not necessarily confirm or rule out any particular illness. My own diagnosis is still evolving, but like you, I figure as long as my symptoms are being treated and care is taken to watch for further complications, I don't really care what they call it. We are glad to have you - feel free to add a post to our Getting to Know You thread above.


Warm wishes,
Jefa

Carrie Maddoux
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#6 Sweet

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Posted 31 July 2007 - 02:21 PM

Hi Crawler,

Looks like you have received some good answers thus far. So I just wanted to give you a big ole welcome!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 tintin

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Posted 09 August 2007 - 04:28 PM

Just an update, I saw my reuhmy yesterday, and started on Plaquenil today. As, no antibodies other then the centromere and the thyroid ones came up positive, she is leaning towards a diagnosis of CREST. For the time being I am happy, I have a diagnosis and am taking something that might help. Does anyone know if the Plaquenil can help with a high platelet count?
keep on smiling

crawler

#8 eah

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Posted 12 August 2007 - 06:16 AM

I had ana with centromere and no skin involvement. I had mild raynouds, acid reflux, joint pain and fatigue. Do you have reflux and raynouds? I was initially diagnosed as underdifferentiated connective tissue disease and then changed to sine scleroderma. My ana has since changed back from positive to negative. I have a lot of other symptoms now, but still no skin involvement. It is difficult at first for doctors to figure out what is going on. I would recommend trying to find a rheumatologist who specializes with scleroderma. Plaquinil did help me with the pain and some of the fatigue.
ANN

#9 Sweet

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Posted 13 August 2007 - 04:37 PM

Hi Crawler,

Oh I am so glad you've started on plaquenil. It will take a month or two to kick in, but it will help with your pain and fatigue. As far as I know it won't do anything for you platelets.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 WestCoast1

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Posted 13 August 2007 - 05:24 PM

Hi again,
I agree with Sweet, Plaquenil probably won't make the numbers change. Time however might. Over a period of 3 or 4 years, (I have lost all track of time), my anti-thyroid antibodies have droped.
*WestCoast*

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#11 tintin

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Posted 14 August 2007 - 03:34 AM

Thanks so much for the responses. Eah, I have raynounds, joint pain, fatigue, constipation, some changes in skin pigmentation, and finger numbness and arthritis. My second centromere level was a little higher then my first, additionally my RBC and MPV were low, and my platelet count and monocytes were high. I think the blood abnormalities just indicate general inflammation.

I thought I had arthritis, and asked for the antibody tests since all of my joints seemed to be effected not just one or two as I would have expected with osteoarthritis.
keep on smiling

crawler

#12 Clementine

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Posted 15 August 2007 - 08:32 PM

Hi Crawler,
It is my understanding that positive anti centromere antibodies (that you have) are mostly found in limited scleroderma, along with a CREST variant.

The antibody slc 70 is most often found in diffuse scleroderma. doctors can also do a nailfold cappilary test to help determine it it's sclero. So, if your Dr is leaning toward CREST, perhaps she's on the right track. What to watch for in limited sclero is you have a greater chance for PH, although rare, than the diffuse group. The diffuse group has a higher chance of ILD. I got this information from a presentation my Dr. gave, by the way.

If you do not have skin thickening, you could be like me and have sine scleroderma. I have diffuse sine scleroderma (CREST and ILD).

Good luck!!!
Jennifer

#13 tintin

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Posted 16 August 2007 - 04:46 AM

Hi Jennifer,

I do have a few small patches of skin that look like callus on my face and hands. They don't look like much and don't bother me. Holding a pen or closing my hand hurts and seems to be a combination of skin pulling and joints not moving. As I read the accounts of other patients I get the impression that skin problems are often not the most troublesome symptoms in the beginning.

My Rhuemi has scheduled an echocardiogram and some other lung tests as a baseline, so I think she is doing all the right things.
keep on smiling

crawler