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Hi Marilyn!

First off, thanks for getting back to us about your appointment. I really agree with your Rheumatologist on this one! Your blood work indicates that you do have Lupus and Antiphospholipid Syndrome. I figured that you had those all along :) I will do my best to make sense of all of this for you darling!

Having Lupus and Antiphospholipid Syndrome is very scary at first isn't it? The quest toward a diagnosis is sometimes so long that when we are finally diagnosed then we don't know how to feel about it! My journey took 11 years to diagnosis and after I was diagnosed I still felt scared. The first thing I want you to do is document your appointment with the Rheumatologist. Write down everything you remember them telling you (or your Hemo). Next, we need to figure out the best way to deal with this situation. I suggest that you need treatment immediately before things really get worse! You need to be treated first with something to thin your blood out. I can't remember if you have had a clotting episode before (including miscarriages), but if you have then you need Warfarin soon! Being on Warfarin will bring you so much success! I noticed in 3 days of the heparin shots (they give those often to start for a couple of weeks to get the blood thinner and then switch you onto Warfarin) that I felt SO much better. My brain fog was gone, my headaches were gone etc. I could think more clearly than I had in years!! So if you do go on warfarin then you will feel so great Neurologically. Next, you need Plaquenil. When I say next, I dont mean in a month but immediately at the same time as the Warfarin. Plaquenil will start to chill things down for you in about 6-12 weeks and sometimes longer. Usually they will give a patient prednisone and Plaquenil so that the pred will cover you until the plaquenil kicks in. This is a great idea in someone like you because of your blood work being so out of wack and your ESR is indicating inflammation. A normal ESR is below 20 in women so you are experiencing inflammation in your body! Once you get your medications sorted out you will feel better, this I promise you!

As for your blood work, the white blood cell count appears normal to me but it all depends on the reference range. There are different ways to measure it.. if it is HIGH or has an "H" beside it then your body is kicking its own butt right now. White Blood Cells are the "fighters of infection" basically! The more normal thing for Lupus patients is a LOW value on this test which has puzzled doctors for a very long time. Your platelet count appears high according to my reference range. Platelets are responsible for the blood clotting or bleeding. If your platelet count is high then your blood is too sticky and will clot faster than if the number is lower. The reason why this is happening to you is from the Antiphospholipid Syndrome (Hughes Syndrome). It is common for patients with APS to have a high platelet count. If I was your doctor I would get you on Warfarin to thin your blood quickly.

The most important thing right now is the emotional part. Lupus is a chronic and lifelong disease that can cause organ inflammation etc. A person that is diagnosed always goes through the grieving process, so allow yourself to do that! You can be sad.. its quite normal. I am glad that you are reaching out to others for support because that is vital. When we surround ourselves with people that have been there then we heal. A good support system at home is really good too for this process because they will be there for you no matter what. Family and friends is what I consider your "support system". Sometimes friends and family will say that they do understand what we are going through when really they can't! It's our bodies that are fighting this disease so no one understands it like patients that are going through it like you are. Also, if you are working then you can make your boss aware of your Lupus/APS and they hopefully will be good with that. If they aren't then it is discrimination and you can fight that one big time!! Here are some things to think about at this time:

~ Your not alone. This site is filled with wonderful people to answer your questions and help you along in this journey

~Feel your feelings and try not to make excuses to others about how you are feeling. You are allowed to vent, cry, kick and scream etc. Just be careful that Lupus does not become your WHOLE identity and just a small part of a wonderful Marilyn package!

~ Keep a journal. I always encourage patients to do this on a day to day basis so that you can record exactly how you are feeling. I always say to make a "scale" of your total day. I make mine out of 10. Today for me is a 5/10. This idea is really good because you can take it to your doctors and share what's going on. Keep track of your new symptoms in this journal too!

~ If you have three bad days with symptoms and then one good one don't overdo it! I often do overdo it on my good days and I pay the price! Just take it one day at a time and try to rest.

~Read books and more books about Lupus and APS. I recommend Kay Thackary's book entitled "Sticky Blood" and Dr. Lahita's book called "The Lupus Book". Those are a good starting off point!

~Tell your family/friends how you are feeling if your not feeling well. Tell them your new symptoms if they arise and aren't serious enough to take you to the hospital. If you tell someone then something goes wrong they will remember the symptoms too.

~Get a pet if you don't have one already! Pet's are the best companions. They don't look at our differences or anything like that. They have unconditional love to give.. and they are SO therapeutic!! It's proven in many studies.

~Stay out of the sun as much as possible. If you are in the sun, your SLE will kick up big time! You have the double whammy of both manifestations of Lupus so try not to overdo the sun.

~ Do the best you can. It doesn't matter how you feel or whats going on, make sure that you don't overdo things and just try. Every morning when I get up I pray "Thanks for this day and the ability to get up" That sets the stage for me! And try not to beat yourself up when you have a bad day. Every person has them, just in different ways! Like I said earlier, take things one day at a time!

~Get your eyes checked by an Opthalmologist often with the Plaquenil. Changes can occur in the eyes when on this drug so its vital to remember to get to the eye specialist.

~ Enjoy all of the directions Lupus will send you. I have found that Lupus has given me so many blessings (sounds odd but its true). You can go on to be a light to others with these disorders someday and everyone will ask you questions. I was where you were a few years ago but I also have the medical training on top of that. I just didn't know a lot about Lupus.. more the basics! Every person is put on this earth for a reason Marilyn, and I bet you will discover yours through this journey with Lupus. Have faith that every day will be alright and you will feel better, I promise!! Just one day at a time, or one hour at a time, or one minute at a time if you have to. I am glad that you are diagnosed so that there arent any more unanswered questions with regards to your diagnosis. Please take good care of yourself and remember that someone out in cyberspace cares about you, and that is me! Keep in touch often and ask as many questions as you want!!

~Luv, Dana (Angelic)





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