Advice needed yet again - thanks in advance :-)

Hi everyone,

I'm apologising for the long winded post but I really need some fellow sufferers advice if possible please

Ok so I was diagnosed 2 year ago with Hughes and Sjorgrens (excuse the spelling) after blood clots were discovered in my leg, shortly started on warfarin

About 6 months later some more extensive blood tests diagnosed me positive for connective tissue disease, which from my understanding is lupus and rheumatoid arthritis

Anyway after fighting tooth and nail I got to see a specialist named on the Hughes website and they done lots more tests yesterday I seen one of her registrars who informed me that the connective tissue disease and morphed itself into hughes and sjorgrens (again excuse the spelling) which I already had before my diagnosis of connective tissue disease, then asked me how my raynauds is?!! I didn't even know I had raynauds!! And theres never been anything on any hospital letters about this!!

My question really is can connective tissue disease evolve and you not have it anymore or does it just keep vanishing from blood tests and reappear from time to time? I feel very confused right now I am going to ring the specialist up tomorrow just thought if I could do that armed with a little bit more information then I would sound less neurotic

Thank you lotsly

Bev x

11 Replies

  • Raynauds is a symptom of lupus and connective tissue diseases. It means that your fingers turn white or purple in cold. So it would make your diagnosis of connective tissue disease more solid. I have the diagnosis of undifferentiated connective tissue disease, which seems to mean I don't have the one thing in my blood they are looking for called ANAs and I don't have quite enough symptoms to make a solid lupus diagnosis.

    Don't get upset. This is just the way these autoimmune diseases go. Sometimes your antibodies may disappear. It never seemed to mean much as to how I felt. Sometimes I had ANAs and I felt pretty good and sometimes I didn't have ANAs and felt awful. And yes, your disease can evolve. You can have some symptoms for a while and then later you may have other symptoms. It is definitely weird and it can be very frustrating.

    I hope this helps you a bit. Hopefully, when you call tomorrow you will get more clarity.

  • I had ana in the blood test that diagnosed me with connective tissue disease and 7/11 symptoms for the diagnosis of lupus - but i was firstly diagnosed with Hughes and Sjorgrens and they've been present at every blood test but the doctor seems to think the connective tissue disease has evolved into something i already had (hughes etc) I dunno whether I'm coming or going with the illnesses and what I have or don't have

    Thanks for your reply I appreciate it

  • Yes, that does seem strange. Maybe your phone call will help you understand what is going on. Just try to stay calm. It's complicated, so it's easier to understand things if you don't get upset, which isn't always that easy.

    Have you had purple or white fingers? They will usually ask you about that when they are wondering about lupus or CTD.

  • Hi there,

    When you call the Doctor tomorrow you shall absolutely not feel "neurotic" (as you say). Try to feel confident. It is an APS-Specialist so he/she must understand that you are confused. No wonder!

    I know that MS and APS can be mixed up sometimes. Sjögrens and APS and also Thyroid-issues have much in common, like Lupus. Connective tissue disease and Raynaulds is perhaps cousins to the others.

    As it is so late and you are calling the Doctor early tomorrow morning perhaps I felt I just wanted to give you some sort of answer but I am not an expert.

    You put your questions and also ask for copies of the results!

    Good Luck tomorrow!

    Kerstin in Stockholm

  • I've always suffered from tingling of the hands feet and lips and the soles of my feet and fingers are always bright red sometimes going darker - I understood that sometimes connective tissue disease can go into remission but the way the doctor was going on was as if they had vanished completely (I didn't think that could happen) and congratulations heres a new edition raynauds - I'm not upset per say just extremely confused because every letter I've had from the hospital has had differences in diagnosis it's just rather bewildering - I'd like to know exactly what it is I'm dealing with so when I get tingling of the arms and hands and lips I'm not concerned it's a heart attack instead I'll know its a symptom of raynauds and filling forms in when asked about my illness will be filled in properly knowing what illnesses I have

    Sorry for the rant just feel a bit like a rabbit in the headlights at the minute

    Thank you both

  • I've been going through this for almost 40 years and can't get a diagnosis that everyone agrees with!

    I hope it will be better for you.

  • Good morning,

    If it is the heart i think only one arm hurts and I also wonder what sort of anticoagulation you are on for APS? Have you had positive antibodies? 1 or 2 or 3?


  • It's very hard when new diagnoses are sprung on you - I'm collecting them like trophies at the moment! Try to write your questions down before calling, then you won't forget anything. Don't worry about Reynaulds, I find it an inconvenience more than anything else. I understand blood tests can often produce differentr results, but I'm sure they'llc continue to monitor you. Good luck xcc

  • Good morning Kerstin

    I'm currently taking warfarin with a inr range of 2-3 the closer to 3 the better, and my last recorded blood tests i was

    Ana positive

    Hep 2 staining speckled pattern

    Ro positive

    La positive

    Rheumatoid factor positive

    DRVVT ratio positive

    And I have no idea what any of that means haha

    Bev x

  • Hi,

    If your APS-Specialist (hope you have one) could let you have a bit higher INR perhaps you should feel better.

    We have found most of us that we need an INR over 3.5 (and we have to stay on that range also) to have our blood thinned enough and that we are prevented from further clots or DVTs or embolies etc etc.

    I see from your schema that you are LA positive. That probably means (you have to ask your Doctor) that you have Lupus Anticoagulant. I have that also plus the two other antibodies that are for APS.


  • My Rheumatologist says if we have one AUtoimmune Disorder it is common

    to discover more....I was initially diagnosed with "sticky blood" factor

    was below 10 when I began taking 320mg Aspirin/day....a few months passed and I began to experience malaise and 'flu-like symptoms'....tests revealed I had Unspecified Mixed Connective Tissue DIsorder....treated with Plaquenil(generc) ..I have been feeling

    well..gratefully for 5 yrs...but my inflammation factors and my APS marker fluctuate

    but only in the "mild" state

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