Need advice PLEASE. Feeling desperate
My name is Melissa. Im 37 and I was diagnosed with Antiphosphoipid syndrome, raynauds, along with the possibility of Lupus, 5 years ago. I was so sick I felt like I was dying. I had all the symptoms of Lupus but a negative ANA. I had an extremely high phospholipid count. I was put on Plaquenil and my Phospholipid numbers went down. I felt like a new person. Now, I am having what feels like a severe flare up. I am SO SICK again and have all the same terrible symptoms I had before. I have almost every symptom except the malar rash. I was on prednisone for a week and I felt a bit better but not "well". I got my blood work done (before the pred) and just got it back. It was NORMAL. Nothing was elevated except for a slight elevated red blood count and a low white blood count (dr. said it was not a big deal). My rheumatologist said that I cannot possibly be in a flare up or my blood work would show it. Is this true???? Can I be having a flare up and have normal blood counts? Should I insist on starting the plaquenil again? My dr. wants me to see a neurologist as I have signs of neuropathy but I don't see how neuropathy can make me feel as sick as I did when I was in an active auto-immune flare up before. I have been sick now for 3 weeks. I have fever's everyday. I know this is a flare up but I can't convince my doctor of it. I have a 2 year old and am feeling so depressed that I don't feel well. Does anyone have any advice for me?
Thank you to anyone who answers,
I have read that even though your blood work comes back normal, you can still have lupus or a flare up of it. I have even read how some people feel terrible, but their blood work comes back normal, but while when they feel well, their blood work comes back abnormal. I guess that's one of the things that makes it very tricky. I would suggest maybe getting a second opinion from another rheumatologist. Good luck and I hope you feel better!
First of all, I understand your frustration. It is hard isn't it and I am so sorry you are on the merry-go-round of who, what, how come and why?
I would think regardless of having a diagnosis your symptoms should be treated until they can accurately diagnose you. I sometimes believe doctors don't realize how we need a specific diagnose, which leads to our frustration and stress. With that in mind, I am sure doctors refrain from giving such a precise diagnosis becauses they really are not sure either. Nevertheless your symptoms should not go untreated.
What is your flare like? Everyones symptoms are different and maybe someone can suggest how to help minimize your symptoms. Continue to seek medical attention, see the neurologist and etc. Even though you don't have that "diagnose" treat, care for yourself as if you do. Eliminate the stress, stop fretting over an accurate diagnose, eat an anti-inflammation diet, light exercise, proper sleep. Joint pain? Use water therapy, hot and cold packs. Pain medication? Wear sunscreen...and etc.
And I have read you can have a negative ANA and still have Lupus.
How long were you on the Plaquenil? And why did they take you off?
Creat a journal of all our symptoms, when they happen..regardless how small they seem to you. Every detail can lead to a proper diagnose. Keep track when you feel worse, and what seems to have caused it. This can help you too to avoid the things that aggravate it and also a great tool for a doctor.
Most important, stop stressing over a diagnose it only makes it worse. I am learning too not to stress over life.
Hope this helps a bit. Post often, ask...someone here will always help in all ways that we need. Understanding, knowledge, health care suggestions, ideas on how to live with a chronic disease and a family life with children easier and guidance through the medical maze....
Breathe in deep and exhale slowly.
Maybe I should make it clear that I have APS (antiphospholipid syndrome) which is usually secondary to Lupus (I hope you all have been tested for it). It causes illness, heart attacks, strokes & blood clots. Most young women die from this disease without even knowing they have it. BUT, a large amount of Lupus patients have the high phospholipids in their blood. So, 5 years ago I was deathly ill. I had extremely high phopho count, hence, the auto-immune disease. I was put on plaquenil and plavix and got better.
I have had flare ups before but the week of Prednisone therapy helped me. Now I am extemely sick again with all the same symptoms... fatigue, fever, sores in my norse, nausea, flu-like symptoms, sun sensitivity, feeling worse on exhurtion, joint pain, etc. I have been like this for 3 weeks now. I was much sicker, 3 days prior to my period and thought maybe that was the problem. NOPE. The pred. didn't completly help me this time and my blood counts were NRMAL. My rheumatologist said I am NOT having a flare up or my blood work would show it. I don't need a Lupus diagnosis, I know I have APS (a similar auto-immune disease). My main question was can you be in a flare up with negative blood work? I want to start the plaquenil again. I can't live like this. Doctors somehow seem to think that if your bloodwork doesn't show anything then it is all in your head.
Thank you for all your wonderful advice. I look forward to speaking with you all more.
The short...95-98% of persons with lupus have a positive test for ANA. Therefore, less than 5% of people can have a negative ANA test, and still have lupus. A person can have a positive ANA and not have Lupus. So, yes, you can be in a flare and be negative.
I am not so familar with APS but this is what I found ...
Hughes (antiphospholipid) syndrome is mainly seen among patients with systemic lupus erythematosus (SLE). This has been called 'secondary' in contrast to 'primary' where no obvious underlying disease is detectable.....secondary Hughes syndrome can occur in several settings other than SLE or SLE-like illness.
Common autoimmune or rheumatic diseases and the percentage of affected patients with aPL antibodies
SLE - 25-50%
Sjögren syndrome - 42%
Rheumatoid arthritis - 33%
Autoimmune thrombocytopenic purpura - 30%
Autoimmune hemolytic anemia - Unknown
Psoriatic arthritis - 28%
Systemic sclerosis - 25%
Mixed connective-tissue disease - 22%
Polymyalgia rheumatica or giant cell arteritis - 20%
Behçet syndrome - 20%
So, APS can occur in patients without evidence of any definable associated disease or in association with SLE or another rheumatic or autoimmune disorder, eh? I am probaby confused, confusing....d'oh.
Why won't they prescribe Plaquenil? I would think you don't have to have a positve ANA to be on Plaquenil. They should be treating the symptoms and not the diagnose from my understanding.
If a doctor thinks it is all in your head, seek a second opinion. They're ones who do listen, and know it isn't in your head. Ask your PCP to suggest a rheumatologist. Go to a hospital and ask if they can refer one...Research online, in your area to see who specializes in Lupus. Many rheumatologist only treat the elderly for RA, OA and not so much in Lupus I am finding out.
Maybe someone else will chime in. Saysusie may give you a clearer answer, she has a wealth of info.
I wish I could be of more help...sigh.
Great info from Oluwa (of course!)
As far as those dang flares? I usually feel WORST when my bloodwork looks the BEST. :?
Both of my docs (primary and rheumy) say they listen to what their lupus patients SAY rather than what the tests say, for the most part.
Gentle hugs and hopes for a better day today -
Thank you. My rheumy is putting me back on the plaquenil. Im so glad that I didn't have to fight with him about it. Also, does anyone with Lupus follow a raw diet? Im sick of felling ill and I need to get my body healthy. I am seriously underweight and a vegetarian. Any good books to read for a good anti-inflamatory healthy diet?
You're very welcome.
That is great Melissa that you are on your way to feeling better. Here is to Plaquenil..cheers. :drinking:
Are you a vegan or a vegetarian?
Perricone has a anti-inflammatory book out there. There is the Omega Diet. The Zone. Both anti-inflammatory. All highly recommended. They all contain fish, chicken, beans as a source of protein and dairy, eggs too.
Those are classified as weight loss books, but I am sure you can modify them by adding calories, in larger portions, or more frequent recommended snacks. Or just to get ideas what are actually anti-inflammatory foods. Rule of thumb, bright colors fruit and vegetables, salmon, sardines, olive oil, canola oil, nuts, flaxseed ground, avocados, oats...
Raw foods can be hard on the system, especially if you have issues with the digestive track, upper or lower. Do you steam, poach, grill?
So, there ya have at..hope it puts you in the right direction.
How are you doing today?
I read alot, from books..listen and learn from others, my Mum taught me alot about self care, being a woman and my personal experience. The more I read, the older I get, I realize how little I really know. Gosh, there is so much out there to learn.
If I wasn't sick, I would like to experience it all. Despite having my funk, before it took me down I did do alot, had seen alot, met many wonderful people..sometimes more than someone else would in their life time. I am very grateful for that. I am still blessed..I can see, feel, smell, hear and taste the world if even I don't venture too far. And too, of course a page turned in a book.
Enjoy the weekend...
I am a vegetarian, not vegan. I do eat fish. Are you saying that bright colored fruits/veggies, nuts, etc. are good for a Lupus diet?
You are right, I do have digestive problems am are worried that raw veggies will make me sick. But, I hear that it is SO HEALTHY that I am wondering if it is worth being sick to be healthy. LOL.
Thanks for your support and info. It is SO APPRECIATED!