Lupus Triggers

New Life OutlookNew Life Outlook New Life Outlook
edited September 2014 in Lifestyle

imageLupus Triggers

Have you ever considered that the activities you complete each and every day may actually be acting as lupus triggers, worsening your symptoms?

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  • My mom died from lupus when she was 72. I am now 64 and was just diagnosed with lupus 4 months ago. My white count was low so I looked up possible reasons and saw lupus on the list. I asked the doctor to check for lupus which came up positive on the ANA. She referred me to a rheumatologist who did additional blood work which show I definitely had lupus. He was surprised because of my age; he prescribed Plaquenil. A few days later I had my first flare-up with infections, sores in my mouth, hives and rashes all over. Doctor told me it was probably because I was out in the sun. I spray on SPF 55 on my arms and legs, anything that might be exposed and wore long sleeves and a large-brimmed hat. He had me take Prednisone for three weeks. During that time I had terrible burning inside my head and down to my waist everyday and then rashes on my limbs and back. I finished up the prednisone and then I began to have intense itching all over every day in the morning and evening (I took Benedryl). My arms began developing some lesions which increased till they cover my lower arms. The rheumatologist thinks the lesions are not related to lupus and wants me to go to a dermatologist. He thinks I am allergic to Plaquenil (because of the intense itching) so he took me off everything till I report back what the dermatologist says. I think he doesn't quite know what lupus is. It's hard but I think I need to find another doctor. What do you all think?
  • Hi Gail...your story is very interesting and somewhat similar to mine. My mother was diagnosed with Lupus SLE at age 76, she is now 79. I was diagnosed with Lupus SLE and heart disease at age 48, I am now 52. I am truly sorry that you lost your mother to this awful disease so take as best care of yourself and your condition as possible. That begins with finding a great Rhuemotologist that is very thorough when it comes to your treatment. My Rhuemy takes time to explain everything to me, about my blood work, tests, and medications. I don't think we'll ever know everything there is to know about Lupus, but I trynot to let it beat me (most days). I do understand your concern and I do hope you are able to follow up with another Rhuemotologist soon that better suits your needs. I wish you all the BEST!

  • Hi Gail,
    So sorry to hear about your mom passing away with this disease. You can beat the odds. So please find a doctor that will take the time to care for your concerns and questions. My rheumatologist has been with me since 1993. I am now 49, had 2 right hip surgeries , 2 beautiful children at which during that time doctors believed it was best not to have children. I do understand your frustrations with the medicines. I know some doctors are willing to experiment with different drugs so you may have a better quality of life. Keep seeking the right doctor{s} for you. Lupus is a condition that you can live with and have a happy life.
  • hi everone i found out i had lupus in 2004 and boy i have had alot of rough times but i have had a few good days too try to excersise and eat right im here if ya need to talk
  • Hi everyone my name is Lorena and I was recently diagnose with Lupus. I moved last year to Guadalajara Mexico and was diagnosed by a Rheumatologist here recently.. I had symptoms for years while I lived in the United States and was there where my family doctor suggested some test because I was always hurting and had many different kinds of pain.... I was then diagnosed with "autoinmune pain" but I didn't get to go to a rheumatologyst because I didn't have a job by the time that happened, and of course lost my insurance as well. Here in Mexico I was able to get into the nationalized medical care and finally got diagnosed here.. I leave in a small village outside Guadalajara called "Tizapan El Alto" where there is no need for a vehicle really and we walk everywhere, which is good! but the sun shines so brite most of the day and I exposed myself to the point of having the wort flare till date, this happened before my diagnose. and didn't know any better I really hope to learn from you all since I'm still pretty ignorant on the subject. and I want to thank my friend in Oklahoma for sugesting this site. From Tizapan with love Lorena....
  • Hi Gail, I definitely would find another doctor.I have to find another kidney doctor. He is not working to well with my rheumatologist, that is one main thing.your doctors have ro work together. It seems like my rheumatologist is doing all the work.
  • I was diagnosed October 31 2013 with lupus. I am 41 years old . It has been the sickest year of my life. I believe iv had every emotion available. I just want to live a long life and not be sick or in pain. Some mornings I wake up and think it was just a nightmare and it's not real.i spent 6 of the last 12 months out of work. In and out of hospitals. I took and immunosuppressive drug that helped my lupus symptoms but I caught mono and almost died from it.i ran 104 fever for 5 straight weeks and was bed ridden. Since then I has to stop taken lupus medications till my blood work was stable enough so currently just taking plaquenil and predesone. I and doing much better now but just the thought of unpredictability is hard to live and normal life. IV had my job for 20 years and do far they have been understanding but sometimes I feel like they think I'm faking it. I have turned in fmla documentation. It's hard to plan anything because I get sick all the time. I catch everything. I work with the public and I'm raising my 3 year old grandson who also bring germs not ready to stop working but would love some tips on how to manage life with a unpredictable illness. I feel guilty for being sick and I feel like I let people down.
  • I was just diagnosed at age 51, after a bug bite made my hand swell and joints ache. The ache spread to my other joints. After 3 dr visits over 3 I was final referred to a rhuematalagist.
    I do good at eating. I am on an extremely easy meal replacement plan that gives me a lot nutrients and protein. Also, I have increased energy. I can tell when I forget to take thAt supplement. Then I get the fatigue.
    I love being outside in the sun, boating, and the beach. I also like to get a little tan.

    Has anyone been okay with using sunscreen and getting some color? Or am I going to have to resort to fake tan lotions.

  • @New Life Outlook
    I read your story and truly understand how you feel. I develop raised whelps that are circular. They not only itch when they first come out but get bigger where my clothes touch. I went to a dermatologist several times and they just thought it was a reaction to something. One time I went and fortunately I had these whelps. They did a biopsy in 2 different areas and the results were such. Vasculitis (sp) induced by lupus. The medicine I was prescribed is one that helps them go away and helps with the itching.
    Sun exposure is a problem and I also use sunscreen. The main area that itches at times is the crease on my arm. For this itch I bought "silver shield" which is homeopathic and it works real well.

    Hope this helps everyone, as you are not crazy.
  • I had the first sign of lupus when I was twenty one returning from a honeymoon. I got to our apt door and two Heath dept people were waiting for me. They told me they had to question me. My husband told them what ever they had to say they should say to the both of us. They looked like FBI. Agents. T hey said my blood tested for my marriage showed that I had syphilis . Great news for a newlywed. Next day I was humiliated to go to the health dept. took another blood test and got the result that it was a false positive . I did not have syphilis. It's called false positive T P I. . The next thing that happened was I had a daughter I was 23 they kept her away from me for 4 days even tho I had the T P I. All over my file . The fifth day they to'd me I could have her she just had a lot of mucus . The next three years I had numerous miscarriages . I didn't know what was causing these until I had a night of profound bleeding after tons of clots which I was sure I had lost the baby they said I was still pregnant they kept me in the hospital over night and said if you don't lose it during the night then we'll make an appointment with an obgyn for a month one month later not only did the obgyn tell me I wasn't pregnant but there is nothing to say you ever were pregnant. Wow four months later. The obgyn people called and asked me why. Haven't shown up for regular appointments . I told him the story, and he said. I'm looking right at the labs saying you were pregnant I had stayed a month in bed to save the pregnancy. How stupid. I didn't lose it at home . At this time I decided to check out adoption. I filled all the papers and the adoption people wanted to know why I was so tired why I was allergic to the sun and why I had arthritis. They sent my blood to UCLA. In a few weeks I was to return to the doctor I sat in his office and he told me in these words well we know what's wrong with you. I said ok then he said you have a rare disease, called systemic lupus arethematosis you will be n a wheelchair in three years and dead in five yeas. I drove to the doctor alone and all the way home I wondered what would become of my three year old daughter. Two weeks later the adoption agency called they had a child for me. My husband answered the phone and told them I can't get a baby my wife is dying. I was shocked . And in his infinite caring decided to tell my mother the she needn't worry about me he'll push my wheel chair till I die. My mother didn't know there was anything wrong with me. That was the beggining I will suffice to say I'm 70 years old after dumping first husband at 35. And undoing all the damage he did. I married at 37 to a man who truly cared and loved me I had another little girl and I didn't die but my husband died when I was 69. The grief was the hardest to get through. I went down to 110 lbs it was a hard journey back but I made it if your interested in the middle you can just ask my love to you all who all fight a different battle none of us are exactly the same
  • I think it's important that people see the longevity that we are all not dying. And the number one thing that irritated me in my life was for people to whom you explain you sensitivity to the sun and they say you can sit Nader a tree. What makes trees grow? Small but annoying
  • It's great reading all of the stories. I was diagnosed with SLE 24 yrs ago... What a Rocky road. Some Dr's think a solution is found in a pill. At one point I was taking 22 different meds at the same time, multiple times a day, I disagreed with my Dr. Who then sent me a certified letter stating, " since I thought there were other alternatives he would fire me as a patient so I could explore them". What an A--. I found a great Dr, who said this is your body, your illness, so you tell me what you want... Yeah...
    After almost a year in bed, I started exercising a LITTLE, then more & more, I lost a 165 pounds that I'd gained from being sick & in bed.
    I took control & my Dr, followed instead of leading...
    I did fabulous for many, many years...
    However in the last few year that has changed.
    I've had both hips replaced, a spinal fusion & decompression, waiting in the wings for a New knee.
    However, I refuse to let this disease conquer me. Good luck too you all.
  • Stress is a huge trigger for my flair ups. I'm on plaquenil for many years. It seems to be under control. FYI being on plaquenil you need an eye exam every 6 months so you don't develop glocoma.
  • I was diagnosed with lupus in May 2010, at the age of 44. I was taking all kinds of meds, including Methatrexate. I'm in 3rd stage renal failure, have the lupus rash on my face & soars in my mouth a majority of the time. As of June, 2014 I began having very high liver enzymes! & since have been taken off of ALL of my meds except aspirin & oxycodone. My body wasn't absorbing all the meds & my liver was damaged!!! I cannot eat foods with grease & fat or my liver feels like it is exploding! I just want everyone out there to be VERY careful about taking Methatrexate, Tylenol, flexeril & iron, which are all absorbs thru the liver & are VERY hard on your liver!
  • I was told about a month ago I have lupus. Today started off good but I think I over did it tired. I thank God for this discussion where I ca learn about lupus. I got the lupus app today thank everyone for sharing.
  • 39 and diagnosed at 12 with SLE, CNA involvement, bi-lateral hip surgery, bowel resection, and a few more surgeries to add on. 8/21/12 at the age of 36 had my one and only healthy baby girl. For the newly diagnosed on here going through the battle of your life. It is possible. I have been with the same rheumatology group since I was 12. They are innovative and collaborative. Find someone you trust, with your life. I pray for all of us daily!
  • I was 72 when I was diagnosed with lupus. Is a, now almost 74. I kept complaining for years that I hurt, all the time, everywhere. Doc finally did blood test and my ana was 1/640 with positive antibodies for sle. Put me on plaquinel was I has helped somewhat. I just have a hard time believing I have lupus at this late in life. Any one else seen
  • Hi my name is Stella,i have lupus since 1992..I been in remission since 2006 i had kidney involvement asmall cast and leak protein was put on prednisone in 1996..Was told i will probably be on this as a maintain on 5mg. Every other day.well for the last 3 years try to go off prednisone bc the doctor said im in remission well he drop the prednisone to mych had bad reaction so had me go back to the as of a year ago got new doctor.he checjs my blood wirk every 3 monthswe talk about getting out the prednisone whuh i want to bc 20 years on it is a long time..but ever the less this last winter i started feeling very tired so i didnt lower the prednisone that was in November my labs was good..but i didnt fine that out until i seen my doctor in February.told me then ok lets lower the prednisone.he said how i been feeling was bc of my fibomy..i was afraid to lower it bc of the tiredness so i stay on the 5mg.every other day bc in February he was going by labs done in November meanwhike i wad feeling like a flare which i haven felt in many many in march i took labs work done call my doctor for the results told the nurse hiwvi was feelikng told her im having bubbles in my urine i just want to make sure its not the lupus bc i felt so tried and not my self..I was told that doctor look at labs everything is ok bc he didnt note anything so i ask for a copy and also told the nurse to let the doctor know about my symptoms and to let him know i did not lower the prednisone well that took a week before they got back to me and that i should go to my GP.about the urine..and still no copy of my labs.again ask to be sent or iwill pick them up.took another week but i finally got them.well i noticed my anti dna was circle so i call to ask what is this and what does it mean..i was told by the nurse no news is good news.i was not comfortable with that ask to see him sooner but you know there always on vacation i went yo my GP..he ssid its not his frild but i need to talk to my RYM... so finally as of June 9 i got to see him meanwhile im feeling little better but still not quite myself.but better then March and April ...well hd told me from the labs done in March my Lupus is active again and he wants me to go up on the prednisone to 71/2 a day for a month wants me back to see if im feeling better.and a couple of days before my appointment get labs done.. im not going to go up on the prednisone til i know what the labs are so i went did labs had copy sent to me my anti dna in march was borderline but now show positive i made a sooner appointment to see him on the 26 of June..My worries are going up on the prednisone and why now did i go active after all those years.Need a new Rym.and has anyone else been in remission like this and go bak to active lupus..i dont know what to except next. I just pray all will be good..thank you for letting me share..

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