Do I Really Have Lupus?!
If you're reading this, Thank YOU. Please allow me to tell you a bit about myself. I'm a "healthy" 37 y.o. woman. I'm a busy and active mama of a two year old girl. I've always considered myself to be strong as an ox, tough as nails, and all of that business. I had a happy and uneventful pregnancy with Isadora. My platelets always came up slightly low, but my OB was never worried. When the pregnancy was over my platelets rose back to a low normal. Now, my hubby and I are trying for number two. We've had two extremely early miscarriages so far this year. One was at 5 weeks and the other at 4. Lots and lots of blood tests later we find that my platelets dabble consistently in the upper ranges of below normal (120-ish), as do my white blood cells (4655). My ANA screen was positive with a titer of 160 and homogeneous pattern and my C3 was slightly low (60). I've tested negative for all of the clotting disorders, hence no anti-phospholipid syndrome. The rheumatologist told me I have Lupus. I couldn't help but feel that she was LOOKING for me to have symptoms and related disorders....for example, my hands were cold in her air-conditioned office and she told me I have reynauds (sp) syndrome. She asked if I get rashes in the sun and I told her that I have gotten sun poisoning on my skin when I've burnt in the past--since childhood. Perhaps it IS lupus related but I'm not sure. I feel healthy. I feel good. She wants me to go on Plaquenil and I'm very nervous about it. I've never liked drugs. I hardly ever take aspirin and I usually opt for acupuncture or herbs if I ever need a helping hand. I'm sensitive to drugs and I fear the side-effects. However, I also fear the disease progressing and ending up terribly sick like my mother--in-law who had lupus for YEARS before it was diagnosed. Please let me know if you have any insight or opinions to share with me. I'm grateful to you already for reading this far.:) Peace. (:
Hi and welcome to WHL
Everyone is effected by Lupus in different ways. Read the thread for more information. Plaquinel is the main drug that we take to slow the immune system down. Looking back at my medical history I see where my SLE started with the birth of my child. Pregnancies change our body's chemistry. Read, research and ask your doctor questions.
Hugs and Good thoughts
I don't have anything wise to add, but I thought I'd say hi anyway! I've got 5 children and pregnancy improved my lupus each time...all the steroids I think! (Of course I can't stay pregnant forever!)
Everyone can be different, but do be informed!
Thank you responding.:)
It's nice to hear from you and interesting what you said about our pregnancies kickstarting lupus. Hey, it also gave me gray hairs and changed my hair from straight to curly! Clearly it has a dramatic effect on our bodies!
Originally Posted by Nonna
The things I wonder about are whether it's possible to stay asymptomatic forever or if the flare-ups and suffering lurk somewhere in my future. I also wonder if its definitely lupus that i have and not some other auto-immune disorder. i only have 3 out of the 11 criteria for lupus. I'm leaning towards bringing my Plaquenil PX to the pharmacy soon. I just fear side effects as I think I will be sensitive. I don't drink alcohol or caffeine for that reason. I'm also skittish about the idea of being dependent on Plaquenil for the rest of my life.
Thank you for saying hello and I wish you best health & happiness!
Hi and welcome to WHL! You are in a really rare situation as most of have to fight for months or years to get a diagnosis. Often we are very, very sick for a long period of time and Lupus has done a lot of damage before someone will finally give it a name and start us on meds. The fact that you have a Dr being pro-active is better than you know.
you ask if you can go your whole life without symptoms and the answer is yes. It is believed that Even people who may be hereditarily disposed to Lupus need a "trigger" to get it started. They are not sure what the trigger is. It may be viral, chemical or a major stress to the body (an accident or childbirth for some) but often when we begin to look back we can see things long before we actually "felt sick". To us they were just our odd quirks or things that always made us feel bad or break out. Things that were just different from other people.
You said they doc said you had raynauds because your hands were cold. I am guessing they also had a slight bluish color to the fingers or at the the tips. That is what raynauds does. There are mild forms and severe so it is possible yours is a mild version that you have never noticed but a trained eye caught. I can't tell you if you should or shouldn't start plaquenil but I can tell you this. By the time you are feeling really bad from the disease damage has been done. There are NO natural cures or treatments for Lupus. Plaq. Is the first line defense and causes the majority of people no problems. Actually, in people with a situation like yours, where they are started on it early, it often can help keep the disease at bay and in its modest form which means little disruption to their lives. Leaving untreated can do the exact opposite. Even though you may not be feeling it, or are actually used to how you feel and don't notice it, the disease very well may damage the body to a point that what could have stayed a mild form turns into a life altering form of the disease.
As I said, only you and your doctor can make that call but I personally am much more scared of Lupus than of the meds because I learned the hard way what happens when it goes untreated.
Feel free to send me a private message if you ever want to talk
Thanks for saying "hi" and making me feel welcome! Pregnancy is a wonderful time for many reasons! Do you take plaquenil during your pregnancies?
A New Perspective
Thank you, Tgal (if I have that right?)!
I'm brand spanking new to the message boards and literally all thumbs with my smartphone.;) You've given me a new perspective on the situation and I thank you for that. I'm indeed lucky to be armed with such knowledge so early on. I'm inspired to medicate and prevent! And you know, it's true...even though I was always very active and dancing with energy to burn, I've had hips that ping and crack and elbows that lock painfully...a few years ago I had a nagging tingling in my left foot... These days I have exhausted days that I blame on working and mothering a feisty 2 year old, but now I wonder about it all. And when I look back at med records my WBC were low in 2009. I'm grateful to my OB/GYN for caring enough to send me to specialists. And I'm grateful to be insured. Thanks for caring enough to write. I hope you're feeling well.
That is the million dollar question. The answer varies depending on who you ask. John's Hopkins says it is not recommended but then a bit later says it is safe. On the Lupus.org website one of the John's Hopkins docs says since the toxicity is all in the eyes he gives it during pregnancy and breast feeding because the risk of flare is so much worse than the possible problems.
Originally Posted by IsadoraMama
Even though I am a big believer in our meds I personally would probably avoid it during pregnancy unless I was flaring badly because he flare could cause possible harm to the baby. I am NOT a Dr. and just like most things Lupus related each answer is different depending on the doctor and the patient
Well, that is verrrrry interesting! My rheumatologist is extremely blasť about plaquenil. She calls it a "nothing drug" with no side effects. She also told me its great for fertility and helps the pregnancy in all ways. There's a chance I'm pregnant now, so thank you for your opinion on that.
Plaquenil is a very mild drug. We know we have to have a special eye exam before starting it due to possible complications with the eyes that must be monitored although those usually happen on higher doses than we take but it can happen to us also. Having said that, it is still a drug and you always have to weigh the risks.
I want to clarify something. For me, I would have to take it (in my physical situation) because my flares would be much more dangerous on the child that I was carrying than the medicine would be but I am a pretty severe case. If I was a milder case then I think I would discuss with my doctor not taking it until after the pregnancy just to be on the safe side. One of the things with this disease is that each person's disease is different so the answers to the same questions may be different. I don't take my meds my flare gets worse which means my seizures get worse and that could cause terrible harm during pregnancy. The risk of plaquenil would be much less and most doctors think it is pretty safe.
If I was someone that wasn't flaring, had no internal damage then I might consider not doing it. The people you really need to talk to though are the ones that have been pregnant while diagnosed. I am sure they will be around soon and give you better advice than my "what if".