new diagnosis

Hi all! I have just been diagnosed with Lupus . I've had APS for about 15 years and am doing pretty well. Well this Lupus thing has really thrown me for a loop .The meds are calming everything down . Ever since I told my family about the Lupus diagnosis they all treat me like I'm dying. No one really made a big deal about the APS and the hospital stays. Granted, I don't really talk about my medical stuff but am I missing something? Is this Lupus worse than I think? I have been working with the Rheumatologist and have a plan. I was just assuming , if I kept on top of it like I have for the APS it would just be another new normal to get used to. Thoughts?

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  • My dad has lupus. Like APS, it is autoimmune. In my opinion, its worse than having APS of you haven't anything really major happen with APS happen to your before finding out you have APS and get it under control. If you've done research, you've read lupus attacks all different parts of your body including your organs. My dad's kidneys are not too far off from needing dialysis. He's on strong steroids hoping for the lupus to go into remission so that it doesn't cause any more damage.

    I guess it's all a matter of what the disease, whether APS or lupus, attacks.

  • Make sure you get a second opinion on the Lupus. It seems easily diagnosed. I've been mis-diagnosed with it three different times.

  • I have had Lupus for decades just only managed to pass the tests recently same for Hughes Syndrome, plus other conditions, in terms of myself it is business as usual, although of course I keep an eye on myself as I did before anyway. It does mean however that it is taken into account should I go to GP or into Hospital. MaryF

  • I do hope its business as usual for me also. I was taken back by the reaction of people about my dx. Just need to get some information and put myself on a plan so I can get on with it ! Thx so much Deb

  • Hi,

    We talked one year ago about your eye-symptoms and too low therapeutic range. Then you had a Hematologist and we suggested a Specialist. I wonder if this Rheumatologist is a Specialist of APS and Lupus? Can he answer your questions and has he raised the therapeutic level which was quite too low before. Do they now take vein-test?

    Best wishes to you from Kerstin in Stockholm

  • Thanks for the replies. My Inr has been super low since the summer. The nurse keeps raising my coumadin every couple of days. I asked for lovenox shots and she said not necessary. To be honest, I have no confidence in this recent group of coumadin nurses. All they do is punch in numbers to the computer program. My hematologist retired to New Mexico , My medical group has just merged with a big company and I seem to be just a number. Sorry to sound negative., long day yesterday and I'm achy and cranky this morning lol. This is the first time that I have seen a rheumatologist being followed only by my GP ( learning curve for both of us! ) It has worked for the last decade but in the last year I've going " downhill" I attributed it to age and being caretaker to my poor mother in law with cancer , my niece with health problems and my dear husband's mental health issues also. I guess the answer is I have to be more vocal in my treatment. Its hard as it isn't in my nature to make waves. I see the Rheumatologist for more tests in two weeks. Any suggestions as to what to ask her? Sometimes, If I list my " symptoms" , I feel like I'm being overly dramatic. I know I know, sounds nutty when I see this in print ! I know I am going to ask for a higher inr. I feel so much better when its closer to 3.0 ( been 1.5 to 2.0 for months) May I ask , what do you mean by vein test? Also , I have some cardiac issues recently. I've always had a low bp and good numbers for cholesterol etc. It was the same at my last check up with GP 6 months ago. Now, My blood pressure is high and my numbers are abysmal. Is this something you see with Lupus or just a coincidence? Sorry for the long post.

    I "lost " this group for a while and am so glad to have found you again! I promise not to be so whiney in the future! Thx again Deb

  • Read up on it. One theory I've encountered is that there are 3 sub-categories of lupus. my Father had lupus and excepting for sun rashes, it did not seem to slow him down. At all. I had lupus like issues when I was in my 20s which included sun rashes, swollen lymph nodes with spleen and kidney problems. I as not diagnosed, despite having a positive ANA. finally on my 7th case of " mono," a doctor treated my " mono" with steroids and I was well. for the first time in years!

  • Can I ask what the sub-categories are? I want to be able to ask my new Rheumatologist some questions when I see her next. Its curious that you mentioned Mono. I had a very severe case of Mono when I was in High School. I missed almost a whole year. When I was first diagnosed with APS the doctor mentioned the mono and the fact that I always have swollen glands and enlarged spleen. When I went to the doctor recently when I started feeling so bad, I described it as feeling like I have mono and arthritis at the same time . Interesting. . . thx again Deb

  • So frustrating! I tried to copy and paste the url, but my tablet computer doesn't approve of my taking such short cuts. goofle '" types of lupus" and one of the sites that should come up is through Johnx Hopkins MedicL Center. Basically, 3 types: cutaneous, or " skin based" lupus, drug induced lupus, and sLE, aka Lupus erythematosis ( sp?)

  • Hi Deb,

    We learn a lot from long posts! It is easier to understand APS that way.

    I still wonder if your Rheumatologist is specialized in APS? She should know that a finger-prick test is not reliable. It should be a veintest for the INR. If I take a finger-prick test in my finger (I selftest every second day) and 2 hours later a veintest at the lab at the hospital, the veintest will be 3.2 in INR and the fingerprick test 4.2 (this is an example) but I have also Lupus Anticoagulant positive like Beta2Glycoprotein1 and Cardiolipin IgG and IgM. I wonder if it is Lupus Anticoagulant you have tested positive for and not Lupus? Lupus is the illness and Lupus Anticoagulant is an antibody they test in the blood for APS

    I also had very high bloodpressure before I started Warfarin and was properly anticoagulated. I have always had very low bloodpressure. High Bloodpressure can go with APS also. I have Pulmonary Hypertension and leaking Heartvalves. That also go with APS.

    If she knows APS she knows that you should not have high bloodpressure (especially as you are on Warfarin also). Ask her to send you for an Echocardiography with doppler.

    " There is a close association between valvar heart disease and central nervous system manifestations in the antiphospholipid syndrome". (www.annrheumdis.com) 2005.

    An INR of 1.5 to 2.0 for months is quite too low. You are practically not anticoagulated with that range. I understand that you feel better with an INR of 3.0. Tell her that.

    Hope you understand that I just want to help you as we have similar symptoms. If she is an APS-Specialist she will understand these things and also know about Lupus.

    Kerstin

  • Hi Thanks for the reply. I just began seeing a reumatologist so really don't know much about her background but I will find out. New year's resolution to be more proactive in my health care ! The coumadin clinic at my gp's office handles my coumadin. I sent a note to my GP about having a blood draw for inr levels. They used to do it that way years ago. For the Lupus diagnosis I was high on the ESR, CRP. CH50 , DNA ( ds ) Cardiolipin antibody IgG,, ANA screen , (titre 1:160 Homogeneous ) increased levels of Plasminogen Activator inhibitor. also RBC , crystals. epithelial cells etc in urine, All this along with the DVTS fevers.fatigue and joint pain . Whoa ! That was a mouthful lol ! I don't see anything that says Lupus antibody test. Is it called by a different name or is it listed above? I am definitely going to ask about the heart Echo. I recall when I was first diagnosed with APS years ago they took a baseline Echo and also bone density. I also had a test where they put the wires on your head ( sorry I don't remember what it was called ) I so appreciate ALL the info you guys give me ! I'm not good at talking to the docs so this gives me a push in the right direction with questions to ask and clarifications . I only wish I could return the favor lol! thx Deb

  • On one of the Patient Days held by HSF Prof Hughes actually said that it was unusual for people to have both APS and Lupus, its usually one or the other. Of course its not unheard of! Many of us have "Lupus like" symptoms and have that written in our notes including myself, because thats a good description, however Im not sure we actually have actual "Lupus"! APS is a cousin of Lupus and can have many of the symptoms.

    As Kirsten says also many people get confused with the Lupus Anticoagulant test when they are tested positive and assume they have the disease (including some ignorant Doctors)! The LA test is an antibody test for APS/Hughes and has NOTHING to do with Lupus the disease.

    1.5 is too low and you need to be injecting at that point as your warfarin is not doing anything so hardly surprising you have symptoms.

    Also are you on Plaquenil? Lupus and APS, this is standard treatment so please ask for that too.

    "vein test" is when they draw blood from your arm to test it, not a finger prick test.

  • Thanks for the reply. I just started on Plaquinil . They say it may take up to 3 months to get up to level ? They also have me gong to an opthamologist for a "base line" . Do you know what they are looking for ? I just had an appointment for new eye glasses recently and they didn't say anything to me about any negatives with my eye health ) I don't have my records from my initial dx of APS as my hematologist retired to New Mexico. I have a request in to the hospital where I had the tests done but they say it will take a couple weeks because they are old and stored at a different facility. ( another New Years resolution - get copies of all my records to have on hand ) The new Reumatologist is wanting to see them also. Thx so much for your help. It is much appreciated! thx Deb

  • When we have these "curious" different sort of eye-issues they never find anything wrong with the eyes. It is too thick blood and we need to be properly and stable anticoagulated. I did the same examinations as you have done. Nothing wrong with the eyes.

    I am sure you will get just fine when you get to that Specialist who knows what to look for re symptoms and also how to treat you. APS will never go away (the antibodies can be there for a while or disappear) but it is treatable by an APS-Specialist.

    Have you read "Sticky Blood Explained" by Kay Thackray. It is not the newest book but she has APS and the symptoms are the same today! I had the same Eye-symptoms as she had and when I read that book I knew at once that I had to start Warfarin, as the doctors had suggested some time, but which I did not want to myself.

    For me it was like a miracle. I could read again and the Vertigo also disappeared like the other neurological symptoms. Still have Tinnitus but less after Warfarin.

    At least some of us have mini-clots and micro-embolies that are not seen on an ordinary Scan of today. They are too tinyl but there are a lot of them and they do damage to our organs. When we are properly anticoagulated they stop their journey.

    Let us hear how it goes for you and Good Luck when you see your Rheumatologist!

    Kerstin

  • Hi there.

    I haven't really got much to add apart from the baseline eye tests are probably due to the hydroxy you take.

    Most doctors will run these tests when you start taking it and then you may have eye tests yearly. The reason being is that there is a very rare side effect of hydroxy (plaquenil) which is it can cause damage to the retina. I've been taking it for a while as well as many others and suffer no side effects.

  • Thank you all so much. I learn so much from you ! Thanks for the recommendation for books and links. Knowledge is Power ! : )

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