The doctor says I have lupus- and I don't argue that point considering the following - achy joints, low grade fevers for no reason, High AnA High ESR. sometimes random rashes. constant headaches. heh achy joints ALOT. (no butterfly rash though) . fingers feel swollen at times. . .
anyway I got a hard copy of my llabs which- I shouldn't of done All my :autoantibodies were negative: BUT my SSA was an 8 , according to my lab reference 0-29 is negative 30-39 is equivlical and 40+ is positive..... and my
SCL-70 (for scleroderma) was a 3 again reference is 0-29 negative 30-39 equivlical and 40+ is positive. So both of those are negative too ... the rest of the antibodies were 0
I am concerned . does even having SOME antibodies mean I am more at risk? The fact that I could possibly have Scleroderma (that's what the SCL-70 is for) freaks me out and I cant get it out of my mind- I already have so much anxiety regarding the issue.
Also a couple of symptoms that I see on me I Don't see on other Lupus patients...
my hands- they will get HOT and BLOTCHY RED, sometimes completely red but usually blotchy . sometimes they itch...same with my feet.. is this lupus? I really have no idea and again due to my anxiety about scleroderma I get a little scared about it. also right below my cuticle of my fingers they can get red too ...they don't hurt its like blood pooling or something (I also have POTS which is called "Postural orthostatic Tachycardia syndrome" - its really hard to explain but my blood pools from that so I don't know if that's it or not
also pressure headaches CONSTANTLY , ive had one now for 2 weeks . I went to the ER for it because I never got headaches CT brain and Lumbar normal- they sent me home with NARCS that I refuse to use
question 3- I have had MAJOR irritable bowel issues since Lupus...never before is this once again another lupus thing?
4th question- how long does Plaquinil take to kick in - I know its different for everyone- im going on 2 months and don't notice a difference.
sorry for the so many questions im trying to put my mind at ease and trust my doctor... I never had so much anxiety mood changes and depression since I got this.
2 weeks after the premature death of my baby- I got BOTH . P.O.T.S and Lupus- both diagnosed very close together (apparently those with autoimmune can get POTS) POTS is a dysfunction of the automatic nervous system
As for lab values, if they're that low, I don't think you have anything to worry about unless it falls in that borderline category. I don't think your values would indicate a risk for developing anything since they're low, but you can always ask your doctor to be sure. Everyone's body is different and can give off wacky labs. I have an elevated d-Dimer which is supposed to indicate that I have a blood clot, but none has been found and I've been through the ringer of tests. I'm also hypoglycemia (low blood sugar), but when I do a fasting lab, my sugar spikes over 100 (70-100 is norm.). It's weird. I wouldn't worry, but I definitely would keep my own copies of lab work like Ann said. You never know when you will need to reference them or if you go to a different doctor or something, they come in handy.
My rheumy said that Plaquenil depends on the dosage. The higher the dose, the sooner it kicks in. Some people take 6-8 weeks to notice any change on 400mg a day. I was put on a kick start dose for a month of 800mg to make it start up faster. I didn't listen because 800mg is a LOT for someone who is 100lbs so I took 400mg. I'm non-compliant. :) I noticed a difference in my fatigue after about 2-3 weeks on the 400mg though. My dad is on 400mg and he doesn't notice a difference, but it does keep his flares down to a minimum.
I'm not sure about the irritable bowel stuff, but it certainly is a possibility that it's lupus related. It could also be a side effect of medication as well.
I too am so sorry on the loss of your child. I always think of the one I lost as my little angel now.
Re: scleroderma...25 years ago I had a blood test that indicated I COULD develop scleroderma. I worried for several months about this and decided worrying wasn't going to help anything and I have never gotten it. My attitude is there are real things for me to worry about if I need to worry instead of about something that might happen.
IBS you can most certainly have without lupus. Right now I am having issues with it and I don't know if it is because I was in the sun too long last week or not.
I have been on 400mg of plaquenil since the beginning of being re-diagnosed which is 2 years now. I am also on 5mg of prednisone. I am still tired but not sleeping all the time anymore. I can't tell you how many years it has been since I haven't ached or hurt most everywhere. I don't know either what is lupus or what is fibro. I am going to ask my new rheumy tomorrow if I will ever have a day that I feel really good and no pain. Best of luck at your appointment!
I’ve had Ibs my entire life. Don’t know any other life, and it comes with Fibromyalgia, which many of us also have. I also have a neurocardiogenic condition/dysautonomia, but the cardiologist didn’t want to put me through a tilt table test to determine whether it is POTS or one of the related conditions. At any rate, I do have orthostatic hypotension - in spite of having primary hypertension. Having both is a pain in the ass to treat, but fortunately the hypotensive reaction is manageable enough that the mutual decision was NOT to add more meds. I’m already on a beta blocker. We reduced my Losartan and that helped a little. Other than that, I just don’t sprint when I first stand up. It’s not really your blood pooling. It’s a problem with the neurological signals when you change position to get your cardiovascular system to respond appropriately. So not enough blood is reaching your brain fast enough (causing dizziness, even syncope - fainting). Tensing the lower extremities, or leaning over with your hands on your knees for a few seconds can help. Some people cross their legs after they stand and clench muscles, if they get dizzy. Be aware it can hit you as much as 12 minutes after you stand. You will need to learn to adapt your habits for this. Do exercise and condition your cardiovascular system for health. The IBS can also be caused by the dysautonomia, by the way. I suspect mine is because it comes with cold sweats and sudden fatigue.
Re the ANA, ESR etc, they are inflammatory marker tests not Lupus specific, and any of them can come up negative. Some people are seronegative in spite of definitely have Lupus, in fact. So autoantibodies are fickle on labs, just so you know. They’re no guarantee one way or another. The predisposition could be there your whole life without being triggered too. No one can know.
Your Dr should have already told you that Plaquenil takes time. Generally the earliest you will see some results is 3 months, so you’re not there yet. I was put on Medrol during that time frame for quicker relief… but then you have to taper off. If you’re okay waiting without it, it’s less risks for you anyway. It can take longer. It seems to go in 3 month incriments for improvement, and it did for me… 3, 6, 9 and then 1 year. The med is cumulative, and the changes may not be noticable as they happen gradually. It is proven to give protection from organ damage for us though, so as long as you’re not having a negative reaction to it, be patient and give it some time. My pain levels are nothing compared to 3 yrs ago. At 2 years I hit my first remission. All my labs dropped, including my ANA. Plaquenil can be an excellent med. It’s worth giving it a chance to work.
My sincere sympathy on the loss of your baby. I can't even imagine how you must be feeling. Lupus is so triggered by stress and from what you have just been through I would imagine it is hard processing anything without it upsetting you.
I have had lupus for about 15 plus years and it has taken its toll on me in so many ways. I have found I am never going to get any quick answers with my disease. This is a fact in my case and the more anxious I get about it the more symptoms start popping up. If you have so many questions I think the best thing is make an appointment with your doctor and go over all your concerns. It really might put you at ease about some of these labs.
I so wish you all the best and please stay in touch to let us know how you are doing.
hay!!!! Relax!!! Like you said everyone is different , yes somethings are from LUPUS , but when things happen try to keep a journal about it and pace yourself .....Beverly L.
NO STRESSING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!