View Full Version : What's Normal?

Whitney Murphy
11-18-2006, 12:51 AM
Hello Everyone- my name is Whitney Murphy- I live in LV, NV- I figured I'd try a support group, I'm a little confused about this Lupus thing- everyone asks me how I'm feeling- w/ all the drugs they have me on I'm not sure what normal is supposed to feel like! :?:

11-18-2006, 08:39 AM
And welcome - I'm not sure there is a "normal" for lupus - it affects everyone differently, and what's normal for me might not apply to anyone else. Lupus is a chronic, lifelong disease, with a pattern of flares where the disease is very active, and periods where you may feel okay. Many people have mild disease and with treatment are able to live pretty much the same lives they did pre-lupus. Others have disabling fatigue or joint pain, kidney disease, or other significant health problems. So what's normal really depends on you - the severity of the disease - the pattern of your particular symptoms, and how well they respond to treatment. As you live with this disease, you will get to know how it affects you, what things seem to trigger a flare, and what times of day you feel better or worse. You may also find that the weather and the seasons affect how you feel too. All of these things will be what's "normal" for you. Even with medications, it can take weeks or months for some treatments to kick in so you start to feel better.

You are certainly not alone in this disease, so feel free to come here when you have questions or just need to vent a little. And again, welcome!

Whitney Murphy
11-18-2006, 11:15 AM
Thanks for the info I guess it's just a little frustrating- I was in the hospital for 2 weeks straight and none of the doctors wanted to tell me that I didn't just have a miscarraige but that I have SLE Lupus! I've only been out for a week and my waist down is so swollen I can't even wear my own clothes- I gained like 20lbs and I don't know if its from the steroids or the blood transfusions and platlet injections + IV's that I had! Then they tell you not to stress out b/c I might "flare" again! But how do you not stress when you know you have to live w/ this for the rest of your life? I think I'm just confused!

11-18-2006, 11:37 AM


11-18-2006, 12:11 PM
Whitney, steroids like prednisone and IV solu-medrol have very strong anti-inflammatory and immune-suppressant effects, so they are often the first choice when your doctor wants to bring a flare under control quickly, or you have organ involvement. But since steroids also have many side effects, including fluid retention and weight gain, they aren't the first choice for long-term therapy. So as your other medications start to build up and take effect in your system, your doctor will probably taper you off the steroids. Usually the steroid weight will start to come off too. Many of us go through this with steroids - they can definitely change your appearance - causing weight gain, especially in your middle, rounding of your face, which we not so fondly call "steroid moon face", and even acne, which most of us though we had left behind with our teenage years. So if any of these things start to happen, don't panic, they are generally a side effect of the steroids, not the lupus.

Dealing with the aftermath of a miscarriage is hard enough without the added burden of being diagnosed with a chronic disease like lupus. It would be strange if you weren't scared and frustrated and sad - who wouldn't be. It's really important for you to have the support of your family and friends right now. As you start to learn more about the disease, and how to manage it, a lot of the fear goes away, and you learn how to cope and what things work for you. But until that happens, it's very much living minute-to-minute and trying not to be overwhelmed by all the changes in your life. I promise you, it does get better, and easier, than it is right now. But you have to grieve first, for the miscarriage and for yourself, and then try to build your life back from there. You can do it, and there are many people here who will hold your hand every step of the way.

There are some good books available for people newly diagnosed with lupus - you might be able to find them through your public library, or a bookstore. Since lupus is such a complex disease, it helps to learn as much as you can about it.

The Lupus Book: A Guide for Patients and Their Families - revised edition 2005
by Daniel J. Wallace

Taking Charge of Lupus: How to Manage the Disease and Make the Most of Your Life
by Maureen Pratt, David Hallegua, Daniel J. Wallace

The First Year - Lupus: An Essential Guide for the Newly Diagnosed
by Nancy C. Hanger, Elena Massarotti

Whitney Murphy
11-18-2006, 10:56 PM
Thank you both of you for the info- to ButterflyRN's question about the dosage- I was on 60MG a day but last week he lowered it to 40MG a day and gave me a water pill and potassisum to take, all he said was to cut back on sodium b/c it retains fluids and that I'd be taking steriods for the next nine weeks! But it's weird b/c when I wake up certain parts of my body are not swollen and just from taking a shower they get swollen again- it doesn't matter if I've taken my steriods or not. Plus no matter what I do I can't sleep more than 6 hrs and that's w/ a sleeping pill, I always wake up early w/ a headache and it doesnt go away until I start doing stuff- but then everything starts swelling again. They told me to take it easy and just lay at home w/ my feet up- but I can't lay around b/c then I get frustrated! Anyways- I was curious has either one of you ever heard of Lupocap? My boyfriend gave me some info about it when I was in the hospital but I think I remember my rhuematologist saying he hadn't heard anything about it- on the website it says its guaranteed to work!

11-29-2006, 07:46 PM
Hi Whitney -

I know this is a frustrating time. You are doing the right thing by reaching out for information and support. I hope that knowing there are other people that know how you feel helps in some way.

Prednisone can definitely affect your sleep patterns in addition to all the symptoms ButterflyRN explained. When I was on high doses of steroids, I learned to sleep when I could, no matter what time of day that was. When you are able to lower the doses you may get a lot of relief from all these side effects.

I'm wishing you thes best!

Whitney Murphy
11-29-2006, 08:01 PM
Thanks for the support~ I'm trying to find out as much as possible. A lot of the posts that I read on here are about people talking about their ADA count or whatever its called- I've only known I've had it for almost a month now, I really don't know any of that info. I just know what I have, and I've read online about SLE but thats about it- theres still alot i dont know, but all my swelling went down, i actually lost 30lbs of "water weight" in a week- everything its a lot better now, I can actually fit into my pants again! Even the ones that I couldn't wear before I got sick!!! :D Lets just hope I dont flare up again! I do appreciate everyones info. and support, THANK YOU!

12-04-2006, 03:34 PM
Hi Whitney;
Since you were getting so much good advice and support, I did not chime in on your posts. As you can see, everyone here is very understanding, informative, supportive and want only to help you in any way that we can.
I just wanted to answer your question about ANA (I am assuming that is what you were referring to). There is no single diagnostic test for lupus. Many tests must be done and there is a screening test called the ANA (anti-nuclear antibody) test which is often checked when a doctor suspects lupus. If the ANA test comes back negative it is considered a normal result, and it is very good evidence against lupus as an explanation for the symptoms you may be presenting. If the ANA test result comes back above the normal range, the test is said to be positive. A positive ANA test by itself is not proof of lupus.
A positive ANA can mean many things. There are many illnesses and conditions associated with a positive ANA, including rheumatoid arthritis, Sjogren's syndrome, scleroderma, and lupus, as well as infectious diseases such as mononucleosis, subacute bacterial endocarditis, and autoimmune thyroid and liver disease. The ANA is only a test and a positive ANA doesn't always equate to having Lupus. A positive ANA is only an indicator which points in several possible directions, and indicates that further investigation and analysis may be needed before a definate diagnosis is made.
The doctor will view your ANA and other lab results in light of your history and physical exam to determine if there is sufficient evidence to diagnose Lupus. In systemic lupus, eleven criteria were developed for research purposes but are frequently used to aid in the diagnosis lupus (I have heard that there are currently 14 critera). Anywayy, your doctor will not make a diagnosis of lupus unless he/she determines that you have at least four of the criteria. If only two or three criteria are met, then there may not be enough evidence to support a diagnosis of lupus. Since not all of the criterion are black and white, your doctor may sometimes be uncertain whether you meet a particular criterion or not. This adds to the difficulty in diagnosint Lupus.
Doctor's determine how high your ANA is by the titre. A titre (ti-ter) is the number of times a solution (such as a your blood) can be diluted before a substance (such as an antibody) can no longer be detected. Thus, an ANA titre of 1:80 means that the blood can be diluted to one in eighty parts and the lab technician can still detect the ANA antibody. The dilutions are usually two-fold, so that the next dilution would be 1:160, and the one after 1:320. Because normal ranges for ANA titres vary from lab to lab, there is no universal normal range. There is no limit to how high the ANA can go! (Frustrating huh?). But, generally speaking, A high titer of this antibody (greater than 1:1280) is usually associated with rheumatic diseases such as Lupus, but has nothing to do with how active a your Lupus may be. Therefore, it is not necessary to repeat the ANA in someone who has already been diagnosed with lupus. Other blood tests (complement factors C3 and C4, anti-DNA, the complete blood count, and urinalysis) are the best laboratory index of lupus activity.
Usually, If you have signs and symptoms supporting the diagnosis of lupus (e.g., at least four of the American College of Rheumatology criteria), including a positive ANA, the diagnosis is generally confirmed and your doctor may not do any further testing. However, If you have only two or three of the ACR criteria, including a positive ANA, then the high ANA supports, but does not confirm, the diagnosis of Lupus. In this case, unless more specific tests are positive (e.g., anti-DNA, anti-Sm, anti-Ro) the diagnosis of lupus is uncertain until more clinical findings (aka: symptoms) develop or other more specific blood tests become positive.
I hope that I've answered you question. Let me know if you need anything further.
Peace and Blessings

Whitney Murphy
12-04-2006, 11:38 PM
Thank you for the information, SaySusie- I was diagnosed with SLE, about 6 weeks ago. I just don't remember what the doctors had said about my ANA levels, and white blood cell counts and all that stuff. I didn't go into the hospital b/c of a flare up, i went in b/c i was pregnant and had been bleeding for 2 weeks straight, at the VA hospital that I go to, they told me everything was fine and the fetus was fine, gave me some morphine and sent me home, b/c i was on orders they wanted me to go back to my military duties, 5 days later everyone thought i was having a miscarriage b/c of all the pain i was having. I went to the hospital which sent me to another hospital b/c they didnt deal w/ miscarriages, I don't really remember much- i was in there for 2 weeks straight,I had a D&C done b/c the baby had been dead for 2 weeks, and ended up "poisioning" my blood, thats how the docs put it- none of them would tell me what was going on- lucky i had family that worked in the hospital (that i didnt know of) who brought specialists in- then they started taking blood like every few hours, i had to have a colonoscopy done, 7 blood transfusions, 2 platelet injections, i had to have a pixline put into my heart b/c they couldnt draw anymore blood from my vains- not to mention all the KAT scans, ultrasounds, IV's, pills, plus i had an infection in my intestions- yeah i dont remember anything the doctors said about lupus, all i remember is them telling me i had it after about a week and a half of being there! When my protein and potassisum levels were normal, my heart rate quit spiking and dropping all in the same day, i could eat a solid meal, my infection went away (they had me in isolation, people had masks and gloves on to come take my blood and give me my pills, it was weird) and everything was "normal" they discharged me from the hospital- but i was on 2 250mg pills of oxycodine every 4 hours plus all my pills, so i was kind of in twillight zone when i left the hospital-None of my doctors are even from that hospital, they're all from individual practices (my rhuematologist, hemotologist, gynocologist, family practitioner, plus whoever did my surgery) my rhuematologist is the only doc i see and thats b/c he refuses to charge me for my visits and anything he did for me while i was in the hospiital (i didnt have health insurance) but yeah- i think i was more confused on how to get all the info about what had been done and who did it! I just always read about people talking about their ANA levels, and white blood cell levels and i never got any documentation stating what i had, my levels of anything- i just got discharge papers and a list of prescriptions to take! But I'm going to see my rhuematologist on Thurs. so I'll ask him about it then! :D

12-05-2006, 09:48 AM
Oh My, what a terrible ordeal to have to go through. Please let me say that I am so sorry for the loss of your unborn child. I know the pain of losing a child. I am glad that you had family who insisted that you be seen by specialists and that you were finally able to get treatment and a diagnosis.
I can certainly understand your confusion during that time, you had just gone through a very traumatic experience and were taking quite of few medications. That you were confused is quite understandable. However, please know that you can ask any question that you have here and someone will research the answer for you. There are not stupid questions here and you will never be judged!! Also, please know that you are not alone, someone here has more than likely gone through what you are going through or knows someone who has. We are here to help you and we want you to know that you are not alone.
I wish you the very best :lol:
Peace and Blessings

12-05-2006, 10:01 AM
Whitney, you went through such a terrible ordeal - it's not surprising things are a little hazy. I'm surprised you remember as much as you do. I am so sorry for the loss of your baby.

I wasn't sure from your post - are you active duty military? Do you have TriCare? Because if you do, you should be able to get care from any civilian provider who accepts TriCare. There should be someone on base who can help you sort out what health care benefits you have - if you have a TriCare card, it may list a phone number, or identify your primary care manager or health care finder. If not, ask your primary care doctor for help, or contact the chaplain's office - they are often very good at steering you to the right person on base to answer questions. The Chaplain should also be able to help you find a support group such as Compassionate Friends, for mothers who have suffered miscarriages or stillbirths.

You can contact the medical records department of the hospital where you were and get copies of your medical records, which should show you what tests were done. Some hospitals require you to submit a written request - others have their own forms. You can also ask your rheumatologist for copies of your records - if he saw you in the hospital, he has access to your chart and can get copies of anything.

I think it's also important for you to talk to someone in charge about the standard of care you received at the VA facility you went to - this seems to have been a very serious breach of the standard of care. Sending you back to duty when you were pregnant and having abnormal bleeding without finding out why was clearly a mistake, and it needs to be brought to the attention of someone on base. If you don't feel comfotable going to your unit commander directly, talk with the chaplain or someone in the legal aid or JAG office about how to report the incident.

Our moderator St.James is a veteran and very experienced in military benefit issues so he can answer your questions a lot better than I can. I know he will be happy to help if you e-mail him directly. There are also several military wives and some retired military women who can probably advise you on the ins and outs of military health benefits.

12-05-2006, 10:25 AM
Thanks for the info I guess it's just a little frustrating- I was in the hospital for 2 weeks straight and none of the doctors wanted to tell me that I didn't just have a miscarraige but that I have SLE Lupus! I've only been out for a week and my waist down is so swollen I can't even wear my own clothes- I gained like 20lbs and I don't know if its from the steroids or the blood transfusions and platlet injections + IV's that I had! Then they tell you not to stress out b/c I might "flare" again! But how do you not stress when you know you have to live w/ this for the rest of your life? I think I'm just confused!

Whitney, I know exactly how you feel! It's so hard not to stress in this day and age. My blood pressure stays between 180/101 sometimes 214/110, which was the reading I took last night before bed...and I'm on BP meds as well. I'm on a host of meds: Prednisone, CellCept, Lasix, Plaqunil, Clonidine, Hydralazine, Diltiazem, Sucralfate...just a few I can name off the top of my head, including Vitamins & calcium pills. Whew!

Whitney Murphy
12-05-2006, 11:46 PM
Yeah its getting better, I still have a lot of stress to deal with that has nothing to do with the Lupus, I guess when I start stressing out I just think of people who have it A LOT worse than me and thank god that I'm still alive. Things may suck at the moment, but they'll never get better if I don't do anything about it! But yeah when I got out of the hospital about a month ago I was on a lot of meds too, right now all I'm taking in the predisone- about 10 mg a day with some tylenol (I quit taking the potasssium pills, the Lasix, the oxycodine, the ambien, the about 4 other prescriptions, they tried to give me a prescription for antidepression/antianxiety pills but I dont like being on pills) so now I'm down to 1 predisone pill a day) I have to see my rhuematologist tomorrow so we'll see what he has to say! I don't even feel like I have lupus, other than the "butterfly rash" on my face and now that its winter, my toes, fingers, knees and back hurt all the time- thats about it!

Whitney Murphy
12-06-2006, 12:02 AM
Thank you for all the info again- sorry I didn't address these posts in the prior post! But yeah, I do agree with seeing JAG- I'm not active duty, I'm National Guard, I don't have TriCare, but at the time I was on "Active Duty Orders" I had to go to a Combat Lifesaving Course in Utah for a week and thats when the symptoms started the Major there told me that he thought I might have Fibromyalgia (or however you spell it) and to have blood work done when I got back to Nevada, when I got back I went to the VA which did no good and then about a week later I went back (I was on my weekend drill) and thats the night they told me everything was "A-OK" 5 days later I was in for 2 weeks- I do have my commanding officer on it, but you know how paperwork goes- I'll find out on Dec. 29th whats going on- but yeah theres a lot of people that tell me that was wrong, plus I got fired from my civilian job b/c I was gone for almost a month for military, came back got pregnant- went to Utah for military, came back was sick- went into the hospital and got fired (b/c I missed to much work- but it was all documented) so i have people telling me to sue my job, etc. I really just dont have the time- Its hard enough trying to find a job in vegas that pays more than $11/hr- so I'll deal w/ it later! :roll: And I have talked to the Chaplain- he was in the hospital w/ me everyday (along w/ half my unit) they're all trying to help out, but more than likely I'll be medically discharged by this time next year! Anyways, thank you for all the info. if I need anymore military info I'll be sure to email St. James! And I'll be contacting the records office for that info!