Raynauds and newly diagnosed with Undifferenated connective tissue disease is it secondary raynauds or primary??

[Emma020884]

Hi I have suffered with raynauds for 9 years and have been to see my rheumatologist and she has said I'm a slight positive on my blood work and has newly diagnosed me with uctd (undifferenated connective tissue disease), does this now mean my raynauds is classed as secondary rather than primary please??

[dianekjs]

Emma, possibly, but it would depend in part on what blood tests were run and what the results are. Do you have that information? Do you have symptoms besides the Raynaud's?

[Emma020884 in reply to dianekjs]

No I'm going back in 3 'onths time for more blood work, they told me my ana bloods was normal but I had a slight raised marker I'm not sure in what test tho, it was my first rheumatologist appointment I came out of there with my head spinning, she has prescribed me with plaquinil twice daily, n yes I've been suffering with just raynauds for 8 years but now am getting new symptoms, head foggyness, numbness in hands, leg cramps/tightening, and bowel problems (I don't no if that's related) I also had a very bad rash over my body after a sun bed, which I've read can be from excessive ultra violet lights x

[dianekjs in reply to Emma020884]

Ok, a few things here - first, you need to call and request copies of your test results to keep for your own medical file. If you don't have one, please start one and get in the habit of always requesting copies of reports - you have a right to your own medical information. You can probably get the name of the positive test over the phone while waiting for the full report to be mailed (or emailed) to you. Second, you need to find out if the ANA test was run by the IFA method, or by ELISA. IFA is the gold standard and by far the most accurate. ELISA ANA testing has a shockingly high rate of false negatives. If your ANA test was negative by the preferred IFA method, a connective tissue disease is far less likely, and your borderline/low positive antibody result is more likely to be a false positive. It gets complicated.

SCL-70 is a scleroderma-associated specific antibody that has a particularly high rate of false positives, which is especially true when ANA by IFA is negative. If your rheumatologist is not a scleroderma specialist (very few are), she may be unaware of some of this information as scleroderma is quite rare and very complex). There are approximately 8 additional antibodies that can also be tested for, but the SCL-70 is the one that most commonly shows up as a false positive in the context of a negative ANA.

So - first you need to verify which method was used for your ANA test. If it was not done by IFA, the chances of it being a false negative are around 40% and it should be re-run by the IFA (immunofluorescent assay) method. If it WAS done by the correct IFA method, then it should be considered accurate and chances of a connective tissue disease drop to less than 5%. Next you need to find out what antibody (marker) the positive result was for and at what level. The digestive tract can often be affected in scleroderma and other connective tissue diseases. Plaquenil is a relatively mild DMARD (disease-modifying anti-rheumatic drug) that is very commonly prescribed for autoimmune diseases. It seems to be particularly helpful in helping with fatigue and joint pain. It has an excellent safety profile as long as you get a baseline eye exam by an ophthalmologist (not an optometrist) and regular interval eye exams (usually 6 months) as long as you're on the drug - which your doctor should have informed you of. There's a very rare but well-documented complication of retinal involvement with Plaquenil. It almost never occurs until after many years of being on the drug, but it is important to monitor in order to catch any changes early.

Hope this helps, and I'm sorry you're having to deal with it. Best of luck to you and feel free to follow up with questions you may have.

[Emma020884 in reply to dianekjs]

Thank you for ur detailed reply, I'm going to ring my rheumatologist secuatary tomorrow and try to get copies of my blood results etc, u seem to no what ur talking about regarding all this, I have no clue what none of it means as I am newly diagnosed n don't no anything about ana etc, do u mind if I message u once I have my blood results etc?

[dianekjs in reply to Emma020884]

Not all. Happy to help if able.

[Emma020884 in reply to dianekjs]

Thank u

[Emma020884 in reply to dianekjs]

I also have a under active thyroid

[Emma020884 in reply to dianekjs]

I've just looked at my next blood test sheet it says testing esr, crp n ferritin, n at bottom it says clinical details u.c.t.d

[dianekjs in reply to Emma020884]

Those are all pretty routine. ESR and CRP measure inflammation and may be elevated in autoimmune disease, but can also be abnormal when an infection or other illness is present. Ferritin has to do with your iron stores, and the notes at the bottom are referencing your diagnosis of an undifferentiated connective tissue disease. I think you should request another ANA test run by the IFA method along with testing for specific antibodies. When is your next appointment?

[Emma020884 in reply to dianekjs]

Thank u, I called the hospital yesterday to ask about my results and they r sending me out a copy in the post, hopefully they don't take to long to arrive. My next appointment should be around 3 months time they said (it's not come yet)

[dianekjs]

Ok, good. Let me know when the records arrive if you'd like help interpreting them. 😊👍

[Emma020884 in reply to dianekjs]

Hi they have come now do u have an email address for me to forward results to u?

[dianekjs in reply to Emma020884]

I sent it to you in a private message, but you can also post the results here if you want. Either/or.