Lupus

yvonnemuse, BSN, RN · Mar 10, 2006

I thought I was losing my mind for about 2 years. I had such severe pain I would lay on the floor and just cry because nothing worked. At times I have taken 8000 mg of ibuprophen a day with only a small amount of relief. Exhaustion pervades my life. As soon as I arise in the morning I look forward to when I can lie down again. My sleep is interrupted and the temazepam I was ordered is ineffective. I am not sure if the poor sleep has contributed to the severe depressive episodes I experience, but it as been noticed that right after periods of extreme stress( even positive) I sink to painful depths of dispair and have even considered suicide. MY DH has asked who is beating me up because of the numerous bruises.Like the poster who repeated contracted pneumonia, I seem to be a magnent for it. I was diagnosed with RA and Lupus last summer. It was a relief to have a name for my symptoms, but quite a sobering diagnosis. I have not joined any support groups yet and have been reluctant to share my dx with others. I am very happy to have found this thread.

MommyandRN · Mar 27, 2006

I am about to be diagnosed with lupus I think. I get rashes in the sun, have joint pain, and have had the rash ont he cheeks for 10 years. I'm supposed to get tested for it this week.

I find it interesting that so many nurses have lupus. I did just read that researchers in France have discovered that the Hepatitis B vaccine is related to autoimmune disorders such as lupus and MS. That's exactly the vaccine I was required to get in order to enter nursing school 10 years ago. Do most nurses today have to get the vaccine? Well taht would explain the higher rate of lupus in nurses! Here is the link to that info:

http://www.pslgroup.com/dg/bf712.htm

katheriner · Mar 28, 2006

Hello to all of you nurses who have an autoimmune disease!! I have to say it is very DIFFICULT to stay working with a disease such as Lupus. I feel like as time goes by a new symptom or problem develops from this ugly stuff. I am taking lots of different medications for it. Any of you Lupie nurses have esophageal spasms? I developed these about 3 months ago. They cause a lot of pain and my food gets stuck. I take Percocet for the pain. The rheumy put me on Diltiazem which hasn't helped. I see the Motility specialist again on the 3rd of April. Just wondering if any of you Lupies have developed this problem and if anything has worked for you. I feel for all of you who suffer with this disease. It is an invisible disease as they say and only a Lupie could understand how it feels to be so sick, but look so well. Take care everyone and I look forward to sharing treatments, etc. Thanks for that website for the Hep B information. I am going to go and read it now.

Take care,

Kathy

KAW1962 · Mar 29, 2006

I am 32 and was diagnosed with RA in June 2005 (one month after graduating RN school). Needless to say, it's been a struggle with pain and depression. I have good days and bad days. My sympathies are with you as I know what you are going through. It frightens me to think my career as an RN may be shortened by RA and although I control it somewhat with Celebrex and will be starting Enbrel, Remicade, or Humira shortly, I have gotten myself disability insurance in the event I'm unable to work sometime in the future.
Melanie = )

My husband has ankylosing spondylitis and has been on Enbrel injections for about a year now. He definitely notices the difference...not as stiff when he first wakes up in the morning. He still can't bound out of bed and jump into the shower the moment his feet hit the floor, but a noticeable improvement. Remicade was an option but it is an infusion requiring a trip to the doctors office twice a month and he felt it was too time-consuming for him. Enbrel injections are more convenient for him. Actually, I usually give him the injections as he can't turn or flex his neck. He always jokes that he never knows when he leaves for work whether or not his zipper is up!

MommyandRN · Mar 29, 2006

Hey I'm wondering, all you nurses with Lupus - what type of nursing jobs do you do? I'm surrently doing critical care, 12 hour shifts. But I'm undergoing testing for lupus right now, I may have it. And I'm wondering if I should stop working so hard. What type of nurses are all of you?

zacarias, ASN, RN · Mar 29, 2006

The article mentioned above (Hep B being linked to autoimmune) doesn't have ANY solid info. It says 'this study links this to that and that study links that to this." No numbers, no statistics, no probability nothing. Plus there is a quote that says "Data from a small study published by the US government appears to support his data and showed that when hepatitis B immunisation was given starting after two months of life it was associated with an almost doubling of the risk of diabetes" How small a study was that?? Was it prospective or retrospective? Nothing.

If we had more info...

katheriner · Mar 30, 2006

Hi,

I am an outpatient radiation oncology nurse. I couldn't handle 12 hour shifts with this Lupus and am having a very difficult time with working now. When are you supposed to get your results back? I hope you're not feeling too sick from your symptoms as Lupus can certainly make you feel downright miserable at times. Are you taking anything right now such as Prednisone or anti-inflammatories for the pain? What symptoms do you have? If I can be of any help with answering questions please let me know. Good luck and I hope you don't have Lupus.

Take care,

Kathy

Welcoming · Mar 30, 2006

I know someone just diagnosed with Lupus and she wants to be a nurse. Is this possible? She seems very sick all of the time and can't even stay in class.

chadash · Mar 30, 2006

What type of ANA results are indicative of lupus?

Turtle81 · Mar 30, 2006

I am a nursing student attending school in Reno, Nevada. I am writing a paper for my nursing theory class, and have chosen to write on Lupus. I found it very interesting reading through all of your posts. I have a couple of questions for anyone who feels like they can answer or even just provide their thoughts for me. I was wondering if Lupus in nurses is just a coralation between the patients he/she is taking or if it makes symptoms worse? Secondly, if Lupus is caused by abnormalities in the immune system (Lewis et al, 2004), does anyone know what those abnormalities are?

If anyone has any in put on this subjest please feel free to respond and I thank you in advance.

katheriner · Mar 31, 2006

Hi,

Sorry about your friend being sick with Lupus and school. Each person is different meaning symptoms, pain tolerance, extent of the disease, etc. Unfortunately, stress just aggravates the Lupus more and triggers flares. I have to say that I don't think there is any way that I could have handled nursing school and this disease. Again, everyone is different and really no two Lupus patients are exactly alike. Meaning....one may have organ involvement and require high dose steroids, etc. Where another one may only require Plaquenil to relieve their symptoms. I go to a Lupus support group monthly and there is one girl who rarely has any symptoms. Wish I was like that. Is your friend on medications for her/his Lupus yet? I hope it helps him/her. It's not a fun disease to live with. If I can be of anymore help let me know. I was diagnosed 3 years ago and it has been a challange working with Lupus. I honestly have to say I don't know how much longer I can tolerate working. I love my job and it makes me angry that this disease is probably going to rob me of my career too. I LOVE being an oncology nurse and will miss the patients terribly when I have to walk away from my nursing career. Well you take care and I will help you with any other questions if you need me to.

Kathy

rehab nurse · Mar 31, 2006

i also have lupus, was dx after having my dd at age 23. i have had some renal/cardiac involvement, and am currently only 28.

it has robbed me of my life, my friends, energy, work, everything. i also have chronic pain from spinal stenosis, radiculopathy, herniated 3 discs in the lumbar spine, and osteoporosis d/t high dose steroid use at the initial dx of lupus. for those of you just dx with lupus, i suggest you get a baseline bone scan and get on a fosamax/actonel for those who have to take the prednisone. it ruined my bones.

i was dx after years of terrible fatigue, brusing everywhere, weird rashes, hypersensitivity to light, poss ANA, APS.

it is very hard for me as i am a single mom with two preschool age children. i am working currently about 1 to 2 days a week, with a pile of bills that i can't pay. i have to work that much for health insurance. i am constantly behind on bills, which only aggravates the stress, which only makes everything worse. i am trying to finish my RN program (only a few more months) and then will work at a less demanding job until i am forced to file for disability. the problem is, it is difficult for me to work routinely. i work with rehab pts, and they all have medical issues as well, exposed to lots of germs, which makes me ill a lot. i always have a sore throat, cough, fatigue,e tc. despite vitamins, rest, etc.

i really hate this disease. it has robbed me of a lot. i have no one to support me when i inevitably get so sick i am unable to care for myself and children. i don't know what will happen to mykids then. i don't want to think of it. this is why i am so terribly depressed.

good luck to all of you. i only know one other nurse with lupus (actually the only other person who i know with lupus).