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Oluwa
07-14-2008, 08:55 AM
Living with Lupus

Despite the symptoms of lupus and the potential side-effects of treatment, people with lupus can maintain a high quality of life overall. One key to managing lupus is to understand the disease and its impact. Learning to recognize the warning signs of a flare can help the patient take steps to ward it off or reduce its intensity.

Many people with lupus experience increased fatigue, pain, a rash, fever, abdominal discomfort, headache, or dizziness just before a flare. Developing strategies to prevent flares can also be helpful, such as learning to recognize your warning signals and maintaining good communication with your doctor.

It is also important for people with lupus to receive regular health care, instead of seeking help only when symptoms worsen. Results from a medical exam and laboratory work on a regular basis allows the doctor to note any changes and to identify and treat flares early. The treatment plan, which is tailored to the individualís specific needs and circumstances, can be adjusted accordingly.

If new symptoms are identified early, treatments may be more effective. Other concerns also can be addressed at regular checkups. The doctor can provide guidance about such issues as the use of sunscreens, stress reduction, and the importance of structured exercise and rest, as well as birth control and family planning. Because people with lupus can be more susceptible to infections, the doctor may recommend yearly influenza vaccinations or pneumococcal vaccinations for some patients.

Women with lupus should receive regular preventive health care, such as gynecological and breast examinations. Men with lupus should have the prostate-specific antigen (PSA) test. Both men and women need to have their blood pressure and cholesterol checked on a regular basis. If a person is taking corticosteroids or antimalarial medications, an eye exam should be done at least yearly to screen for and treat eye problems.

Learning to recognize the warning signs of a flare can help the patient take steps to ward it off or reduce its intensity.

Staying healthy requires extra effort and care for people with lupus, so it becomes especially important to develop strategies for maintaining wellness. Wellness involves close attention to the body, mind, and spirit. One of the primary goals of wellness for people with lupus is coping with the stress of having a chronic disorder. Effective stress management varies from person to person. Some approaches that may help include exercise, relaxation techniques such as meditation, and setting priorities for spending time and energy.

Keeping A Flare At Bay

Doctors have identified healthy habits that can help you avoid triggering a lupus flare.

* Always take your medication as prescribed.
* Keep your doctor's appointments, even if you're feeling well.
* Avoid taking sulfa drugs (sulfonomides) that are used to treat infections such as bronchitis and urinary tract infections.
* Limit your exposure to sunlight; apply sunscreen before going outside during the day, and wear sun-protective clothing and a wide-brimmed hat.
* Reduce your risk of infections.
* Get plenty of rest.
* Do not smoke.

Information obtained by lupus.org

laurid8967
07-15-2008, 06:13 PM
Oluwa -
Thank you for all the good info!! Its greatly appreciated!!
Love Lauri

sits_inthe_corner
07-16-2008, 02:45 PM
:shock:

There's another DUH! for me...I've always had problems with sulfa drugs, to the point I refuse to let the doctor give me a perscription with out checking to make sure it has NO sulfa in it.

Saysusie
07-17-2008, 09:05 AM
I am so glad that Oluwa posted these! They are providing information that we all needed to know.....like our adversity to sulfa drugs!! :lol:

Peace and Blessings
Saysusie

Oluwa
07-18-2008, 03:55 PM
You're welcome.

Thank you for making them a stick'em. :D

flyaway
07-29-2008, 12:20 AM
Wow... Thanks very much Oluwa post this information. It really help alot. :)

preshad
04-15-2009, 10:23 PM
I have been living with SLE for 39 years. I recently was told that I have an auto-immune irritation in both of my eyes. The doctor has me taking cortisone drops in both eyes. --one drop, four times a day.I bought myself some eye vitamins too. My eyes seems to be feeling better now after three weeks of treatments. I am no longer having visual disturbances.Ifirst discovered something was wrong with my vision, when I was in the sun, it looked like there was glitter sparkling in my right eye, and it looked like there was a fuzzy area in the center of my vision in my that eye. Praise the Lord, things are looking pretty good again. no more glitter sparkling in the sun.You have to visit your eye doctor for regular checkups when you have lupus. We lupus people can allso have a problem with dry eyes.-Sjogrens is the name of the problem related to dry eyes. Good luck. Happy summer.

preshad
04-15-2009, 10:28 PM
I have found through experience that Sulfa drugs triggered a flare up for me. I now say that I am allergic to Sulfa

Saysusie
04-16-2009, 08:49 AM
You are absolutely right. Many Lupus patients suffer flares from Sulfa drugs. So I, too, tell my doctors that I am allergic to Sulfa!

Peace and Blessings
Namaste
Saysusie

wrightrs
04-17-2009, 11:42 AM
Good information thanks!!! I get so busy at times,that I fail to listen to my body

wrightrs
04-27-2009, 10:10 PM
Just looking over this again. Feeling bad !!!!!

Mary Jane
04-29-2009, 10:19 PM
I discovered I was sensitive to sulfa drugs back in college (nearly 20 years ago), yet I was just diagnosed with lupus 2 years ago.....this is just one more thing that says hmmm, I think I've had this for quite some time, but just did not realize.

gina
04-30-2009, 04:46 AM
thanks for the info.
i am allergic to sulfa drugs, and i found out recentlly that celebrex has some type of compound in it that is related to sulfa drugs i think it was sulfate, and my doctor said i couldn't take that either, and some creams have it also that i can't take.

purple_butterfly
06-03-2009, 02:33 AM
I had no idea sulfa drugs could cause a flare. Thinking back, I have had bad reactions to sulfa each time I have been on it. I just list this as an allergy now. Thanks for the info.

AmyK
07-02-2009, 05:26 PM
Thank you so much for this info! There are so many things I'm learning that were signs that I had this before hand and never would have paid attention to, like the sulfa meds.

Oluwa
07-02-2009, 05:40 PM
You are all welcome...hugs. Love. O.

lindsayyy
10-28-2009, 12:44 PM
thank you so much for this information!
i appreciate it.
what i need help on is my medicine. big struggle for mee.

Humble
11-29-2009, 06:09 PM
Hello, how are u..?

Irish
12-26-2009, 06:51 PM
I just did a round of sulfa drugs to treat an infection not knowing how it can affect those of us with lupus. Had a BAD flare afterwards. This is good to know. I had no idea that sulfa drugs could cause a flare. -- Irish

melly c
04-06-2010, 05:28 AM
Thanks great info

whats described as a flare is what i been exp some time gp had no clue but hope she wil educuate herself now sle in in writing,melly

bamber
04-17-2010, 05:20 PM
I had a horrible allergic reaction to sulfa drugs in high school. Kind of makes me wonder...

babysister66
10-05-2010, 08:50 PM
Wow, another eye opener. I too have bad reactions to taking sulfa drugs. I always get C-diff when i take it, so I now too say I am allergic to it. lol

MLockwood
12-14-2010, 10:46 AM
It has been some time since I have posted here. So many things have changed with my disease that they are not sure what they are going to call it. I was interested to see the comments on the sulfa drugs. My Rhuematologist currently has me on sulfasalizine. Does that fit into the Sulfa drugs? I am assuming it does. My symptoms have changes so much over the last 6 months. The pain in my hands and arms comes and goes, but for the most part is under control. I am now dealing with major chest pains when I breathe. I have had Chest CTs, Chest XRays, blood work, they can not figure out why it hurts to take a deep breath. I have lost 25lbs over the past 5 months and I look and feel disgusting. Everyone comments on how skinny I look, they talk behind my back about how sick I look, I am always asked if I have gotten a 2nd opinion. All of this, plus the disease has really thrown me into a funk. On Sunday, I was changing my clothes and my husband, who has always taken care of me and continues to do so, looked at me with tears in his eyes and said "you need to eat more". I was sad, hurt, ashamed, and had so much guilt. I wish it was that easy. I am just so frustrated with this disease. I was a healthy, 33 year old 19 months ago and my husband I were looking forward to trying to have another baby. Now, almost 35, I have no fight left in me. ugh...... I feel so lost and frustrated....

tgal
12-14-2010, 11:46 AM
Hi there Mlockwood. I am so sorry you are in a bad flare and things are difficult for you right now. It is often hard dealing with the healthy world because they just don't understand the world that we live in. I am not sure what is worse. The people that look down on me and think I am crazy or the ones that look on me with pity. I know you are in a very hard place right now. I have come to the point where I hate having tests. I am so sick of hearing "we can't find anything wrong" when I KNOW there is something wrong. It is frustrating but please don't forget that we are here for you. You are not alone on this journey.

wendylee03
06-16-2011, 11:25 AM
Just a question, I'm not currently on anything, except flexerill for pain, and i only take that at night, otherwise i hurt so bad that I don't sleep, I lay there curled up and cry! Anyway, what would you suggest for dealing with the pain during the day time? I was a little achy this morning when I got up, I had some running around to do and was out in the sun for about 3 hrs, now i'm sitting here hurting all over, my toes, knees, fingers, elbows, shoulders..

steve.b
06-17-2011, 03:12 AM
wendy, spending 3 hours in the sun might have been enough to give you these symptoms.

everyone is different. some of us can spend that amount of time in the sun, others deffinetely not.

you need to speak to your doctor about pain medications.
i use a combination of panadol osteo and celebrex for my everyday pains.
both of these i need a script for.

there is quite a few options, your doctor should be able to sort out what will work for you.

lovedbyHim
06-17-2011, 03:25 AM
Hi Wendy, I get sick after 30 min. in the sun if I am not covered in sunscreen . When it triggers a flair, & it does for me, I oftentimes have to have my prednisone increased. I am on skelaxin for the spasms and still it does not seem to be managing the spasms. It's rough. Pain can wear on you over time. Here is a gentle hug(smile).

Melodyroseak
07-27-2011, 07:42 PM
I just recently found out about sulfa drugs, I too tell people I am allergic to it also. My aunt is a pharmacist and told me that MOST, generic drugs are blinded with sulfa and that is why I always got worse and to stay away from generic.

I also tell people that I am allergic to the sun, they seem to understand that better, then trying to explain the lupus aspect of it.

tgal
07-27-2011, 07:55 PM
I just recently found out about sulfa drugs, I too tell people I am allergic to it also. My aunt is a pharmacist and told me that MOST, generic drugs are blinded with sulfa and that is why I always got worse and to stay away from generic.

I also tell people that I am allergic to the sun, they seem to understand that better, then trying to explain the lupus aspect of it.

I tell the the same thing. Allergic to the sun is much easier then trying to go into a disease

GeoKasher
07-28-2011, 05:12 AM
I had a bad reaction to sulfa drugs back in 1985 and was told I was allergic to them. And I thought all of these symptoms only started 6 years ago. Very interesting...

serand4
07-30-2011, 09:38 AM
I can't seem to get my primary doctor to help with the dry eyes at all! Very frustrating!!!!! As you know, probably very well, it hurts! I take over the counter gel. Sunlight is like I'm a vampire or something -- pure agony. Hopefully I can get into an eye doctor soon. Steriods seem to help in other areas so maybe it would help my eyes. Thanks for the posting!

lovedbyHim
07-30-2011, 01:45 PM
Hi serand, I have dry eyes and use over the counter drops. My eye doc has me using it three times a day and it helps when I listen(grin). My mom was given an ointment she used at bedtime and the next day she felt much better. I hope someone can help you soon dear.

gkf109
07-30-2011, 02:03 PM
Hi serand, when I seen my rhem for the first time a couple of months ago she aske me when the last time I had a eye exam and I said it had been over 15 years she asked if I could get one even though I didn't say anything about my eyes, well after I went to the eye doctor I was surprised to learn I had dry eyes, they put me on restasis and I take it twice a day.

GeoKasher
07-30-2011, 03:35 PM
Do the dry eyes start out gradually? Just wondering because I've noticed over the past several months that when I wake up it is difficult to get my eyes opened. It's like they're dried shut. Once I get them open they are fine and I don't have any problems during the day so far.

tgal
07-30-2011, 04:22 PM
Do the dry eyes start out gradually? Just wondering because I've noticed over the past several months that when I wake up it is difficult to get my eyes opened. It's like they're dried shut. Once I get them open they are fine and I don't have any problems during the day so far.

You might want to talk to your doctor because dry eyes can be symptom of sjogren's disease. It is not rare for a person who is diagnosed with 1 AI disease to end up getting more. It is called having overlapping diseases. Thankfully I haven't had much of that. I have trouble with my mouth. It gets so dry that I have to keep something to drink with me constantly. If not it gets so dry that my lips get stuck together and my tongue will get stuck to the roof of my mouth.

LOL isn't it strange the odd things that we go through?

BonusMom
07-30-2011, 07:13 PM
I have been taking Exovac 2 x's daily (although it's rx'ed for 3 x's I don't take any other meds mid-day so I always forget the second dose). I have noticed a definite improvement in the amount of saliva I have.

tgal
07-30-2011, 07:18 PM
I have been taking Exovac 2 x's daily (although it's rx'ed for 3 x's I don't take any other meds mid-day so I always forget the second dose). I have noticed a definite improvement in the amount of saliva I have.

Really? I may have to talk to my doctor about that. Thanks!

Nihao1.
12-05-2011, 04:17 PM
"BonusMom" or anyone else that has experience with Exovac- My doctor prescribed me exovac as well, but I was not so keen to add another pill to my daily pill intake. I tend to fear side effects... Did it have any side effects that were noticeable? I would love to solve the problem of dry mouth. For dry eye, I find cheap over the counter eye drops to work really well. I wish there was something more like that for dry mouth. I tried biotene mouthwash but it wasn't so helpful.

Ellie Hansen
03-08-2012, 12:22 PM
Thanks for sharing this! I have a couple questions, as I was diagnosed only a few months ago.

1. Why is it a problem for some of us to go in the sun? I remember my doctor said I should avoid the sun but why is that?
2. Why are sulfa drugs bad for us? I don't think I'm allergic to sulfa, and my doctor hadn't mentioned this to me.

tgal
03-08-2012, 05:04 PM
Thanks for sharing this! I have a couple questions, as I was diagnosed only a few months ago.

1. Why is it a problem for some of us to go in the sun? I remember my doctor said I should avoid the sun but why is that?
2. Why are sulfa drugs bad for us? I don't think I'm allergic to sulfa, and my doctor hadn't mentioned this to me.

There is a great thread about the problems with us and sunlight. It can be found here (http://forum.wehavelupus.com/showthread.php?4365-PHOTOSENSITIVITY-in-LUPUS)

As for the sulfa drugs, there are a couple of reasons for this. The main one is that people with Lupus (SLE, Discoid, SCLE) tend to be more apt to rashes. Sulfa drugs can intensify or even cause rashes on us. The other, more important reason, is that they can make our disease worse. According to Johns Hopkins sulfa drugs are actually the trigger to turn on Lupus in some people and, in people that already have Lupus, can intensify a flare. There is some great information found below

Johns Hopkins Arthritis Center (http://www.hopkins-arthritis.org/arthritis-info/lupus/)

Hope this helps!

DrinkofWtr
04-12-2012, 07:53 AM
I know I am allergic to sulfa drugs. Last time I was given sulfa, I broke out with big, red spots all over my torso, etc. I have a horror of having sulfa prescribed for me again and check very carefully to see that I am not prescribed it. I was especially diligent about it when I was in the hospital some time ago.