Home Forums General Discussion Advice Please – ANA Titre 1:2560 Centromere Pattern with Isolated Raynauds

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  • #466280
    Karli
    Participant

    Hi Everyone,
    Just want to start by saying I’ve been reading this informative and supportive website for a couple of years now but never posted. I’m hoping that perhaps people with knowledge of scleroderma can help me with what I should do next…
    I realise people on here have far worse symptoms than I do but I feel I’m early in and I just need some advice please.
    I was extremely stressed when I first found out about this pathology result of 1:2560 centromere pattern (anit-centromere antibodies). I have isolated raynauds with no other symptoms.
    I saw a rheumatologist who also sees scleroderma patients and the rheumy is not too worried about it, unless I ever develop more symptoms. Baseline testing with PFT and bloods were normal. I didn’t get an echo and my rheumy said I didn’t need to worry about a nailfold capillaroscopy because my fingers look very healthy. She offered me nifidipine or nitro glycerine cream for raynauds, which I didn’t want to start taking at my age. I’m 38 years old, fairly fit and on a healthy diet (gluten, dairy free, low sugar, whole food and veggie juicing).
    I’ve had raynauds for over 6 years and I decided to investigate further with ANA testing and full blood tests, which is when I found out a couple of years ago.
    The raynauds is painful, every time I get an attack, it usually occurs in all fingers and toes and also causes me to shiver. It can happen several times a day, with any slight drop in temp. I’ve tried a lot of natural things to help the raynauds but nothing seems to work. The only thing that helps is warm weather or red wine! I live in Australia but where I live is quite cold and always windy. Have no idea how people cope with the snowy, freezing weather overseas!
    Do you think it’s worth trying AP at this early stage? I’m very interested in trying it. Could it reverse the raynauds?
    Apologies for my post being so long!
    Thanks,
    Karli

    #466282
    Linda L
    Participant

    If red winę helps it must be blood circulation…..

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, vitamins and minerals.
    MTHFR heterozygous

    #466283
    Karli
    Participant

    Thanks Linda,
    It’s definitely a circulation issue (microcirculation) that I’ve never experienced before. From everything I’ve read on this website, as well as various medical journals, plus Choclits website, it’s pointing to the beginning of limited scleroderma. Plus the pathology result also stated that the ANA reading is highly suggestive of the CREST (limited scleroderma) variant, with isolated raynauds and other manifestations may occur in the future. That’s what made me initially panic!
    I feel I should give AP a go to see if it can bring down the ACA titre and reverse the raynauds. I’ve seen the Australian AP Doctors list but would also appreciate advice from anyone in Australia who has had great results from someone who’s treated patients with scleroderma…maybe someone can PM or email me as I don’t think we can name doctors here.

    #466284
    Linda L
    Participant

    I’ve read that this pattern occurs in SLE and other connective tissue disorders like RA, Lupus. How do your doctors know that it is raynauds?

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, vitamins and minerals.
    MTHFR heterozygous

    #466285
    Karli
    Participant

    The doctor directly witnessed the raynauds attack in all of my fingers, when I came in for an appointment one cold afternoon (warm car to cold).
    I told her that was the reason I initially had the ANA tests done, in the hope that is was only primary raynauds, not secondary. She thought it was best to see a specialist. My fingers (and usually toes) always go white (numb and sting) at any drop in temp or when they’re exposed to cold wind, or the fridge. My body is initially warm but fingers react so quickly to cold and then sometimes I get shivery goose bumps too. It’s painful and once I warm them again, some light purple patches sometimes occur and then the blood returns and they go pink/red and it stings and then it’s normal again…until the next cold attack. It can take anywhere from a few minutes to 20 minutes to completely warm them again.
    But you’re right Linda, the pathology result also stated those connective tissue disorders, as well as primary biliary cirrhosis but mentioned they’re more rare with this pattern. All other bloods for those disorders came up normal, as did a thyroid, iron and various other tests too. But I guess they’re not completely out of the question, as you say. And my rheumatologist wasn’t too concerned with things, unless I show other symptoms down the track. I guess I’m just being extra cautious. Thanks again!

    #466286
    Maz
    Keymaster

    Hi Karli,

    Sounds like you have already selected your 3 Aussie doc lists? Where are you located in Aus? Did you request the most experienced AP doc list on the automated system?

    Another question for you (sorry!) – have you had a chance to read the 2 Henry Scammell books yet? While every person’s treatment path is unique, Dr. Brown discussed the upsides of early treatment, because this can offset the potential for tissue damage. It’s worth reading the books to really understand the rationale for the treatment as it can take a degree of self advocacy and self investment. You sound very much like someone who is doing their best to live a healthy life, so this is great, too, and will have laid a good foundation if you ultimately decide to pursue treatment.

    Minocycline has some incredible properties, quite aside from its anti-microbial effects. One of these is it’s chelative properties, which works very well to bind to minerals, like calcium, which is implicated in the calcinosis deposits under the skin of those with CREST. There are studies regarding this if you’re interested in research.

    Scleroderma – minocycline

    Some folks find Minocycline helps with circulation because it also has some blood-thinning effects. Patient experience that has been shared here also points to systemic enzymes bought over-the-counter to help with breaking up fibrosis and blood-thinning that can help reduce the effects of Raynaud’s. People have remarked here that their symptoms regress in the order in which they arrived after being on AP for a while. As Raynaud’s is often the first overt symptom of various rheumatic diseases, it can be the last to go.

    It’s worth running searches on the sorts of topics you’re interested in on this forum as things are quiet here at the moment and you should find lots of helpful info that way from past discussions.

    A warm welcome to you!

    #466287
    Karli
    Participant

    Hi Maz,
    Thanks so much for that great information on minocycline. Yes, I’ve read a digital copy on one of the Henry Scamell books a while ago but I’ll have to order a hard copy of those texts too. I’ve also read quite a bit of information on the threads here, over the past couple of years, especially the ones regarding systemic enzymes and I used them (nattokinase) for 4 months (at decent doses) during winter but unfortunately didn’t see any improvement in my raynauds.
    If you have some time, it would be great to chat further with you in a private message or email, as my story is a little longer and slightly complex and I’m just looking for some advice on my next steps. But if you’re a bit busy at the moment, I completely understand. Or even if you could put me in touch with someone who may be able to assist further, that would be great, Maz. Appreciate your time, support and all of the energy that you and the other, wonderful volunteers contribute to this forum!

    #466288
    Maz
    Keymaster

    Hi Karli,

    Yes, it’s fine to PM me, although worth noting I’m just a fellow patient so unable to offer medical advice, per se, just share possible pointers from personal experience or to recall that of others.

    Chat soon.

    #466289
    Lynne G.SD
    Participant

    Hi Karli;
    I am glad to see that you have read Ed’s(a.k.a. Choclit’s) site as he has the absolute best SD information.Do you understand the part where he talks of rouleaux and hyper goagulation?If so you have seen how TPE breaks up the clumps of red blood cells that plug the tiny capillaries.I have found a solution for that also and it’s as cheap as can be.Google …benefits of nattokinase…Natto is made from fermented soy and just about got rid of my Raynaud’s in one month.I live in Canada,can shovel snow and even sit in a snow bank for hours with absolutelly no Raynaud’s showing up.The only time it hits me is on a hot summer day when a breeze,even a warm one hits me on the neck or the small of my back.Very strange and I still have not figured it out after 25 years.

    #466290
    Karli
    Participant

    Thanks again Maz and Lynne G,
    I appreciate the support and I’ve just messaged you, Maz.
    Yes Lynne, I did read all of your posts on past threads. They have been very helpful. Glad nattokinase worked for you.
    I did try Neprinol for a good 4-5 months but it didn’t do anything for the raynauds unfortunately.
    I’ll keep researching. Thanks!

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