how about we re-introduce ourselves, I'm Leta

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Veteran Member

Date Joined Aug 2005
Total Posts : 590
   Posted 6/2/2007 4:27 PM (GMT -6)   
Hi everyone,

I have been thinking about this for a bit. Re-introducing ourselves as members to one another, our lives, and how we were dx with this disease and how it affects us daily. I thought it would fill us in as how we were and how we are affected with this illness. I am 32 was diagnosed when I was 26. As a child I suffered horrible growing pains and migraines after sun exposure. I did not easily burn, but did tan rather quickly. At 26 I had gone tanning and then suffering psychosis, delussions. I wanted to end things so I checked myself into the psychiatric unit. After about 5 days I was diagnosed with PTSD. I followed up with a Psychiatrist who suggested I see a Neuro for my recurrent migraines. Later the Neuro, who was awesome started pulling me off my Psychiatric meds and told me he thought I had Lupus. I had been brushed off by doctors who said it was all in the head. Well, it was but due to a high ANA. He sent me to a Rheumie, who confirmed I was a very sick young lady. I was diagnosed with Myalgias, SLE, Sjogren's Syndrome, and Rheumatoid Arthritis. I had no idea what I was in for. I joined the Lupus Foundation, bought books on Sjogren's and joined the Arthritis Foundation. I was scared but stayed positive. Meds I was put on was Plaquenil 400 mg and Celebrex. The plaquenil made the psychiatric stuff worst and flared me worst but after a few months things settled down. I lost weight due to the Plaquenil and felt much better. I still had joint pain and muscle pain but not like previously. 2003 came around and the psychosis was back full force after taking the med Strattera for my ADD caused by the Lupus. I would panic and freak out over minor things. I had no idea what was in store for me. I was told I did not have Lupus but some type of auto-immune problem. I was told I could tan as well. I went tanning in March of 04 to get ready for an art show. I developed tachycardia, adrenaline problems, high ANA, rashes, allergic to all things, severe sun sensitivity, etc. No one could figure it out, except that I did not have cancer. No one checked my liver, my pancreas etc. By summer of 04 I was barely 100 lbs and skin and bones. Every time I ate I had severe rapid heart beat and adrenaline rushes. I had lost my memory and was shockingly
mad depressed and angry at the world. I had seen over 30 doctors since then. I cannot tell you the bull I heard of it all being in my head. I would get rapid heartbeat just from sun exposure. I had been put on so much allergy meds and the pain was unbearable. Later we found out that I had Porphyria. All my symptoms fit. I had this plus the previous diagnosis. I am literally allergic to the sun with three illnesses that cause the sun sensitivity. The lupus, the Sjogren's syndrom anti-body RO/SSA which causes sun sensitivity and the Porphyria. We do not yet know what kind of Porphyria I have but have been able to rule out some. I do not have the cutaneous because if I did the Plaquenil would correct the sun sensitivity. It is either Corpo or the Variegate form. I have to live in a fairly hypoallergenic environment, and must avoid many foods. I am allergic to everything lol, like alot of us are, suffer from asthma and lung problems, must watch my liver, go from anemia to iron overload LOL, and this one is good. The Lupus meds make the Porphyria worst. eyes So my life is complicated. I live literally in the dark, go out at night, and know to watch meds that will make me sun sensitive. I love the spring through fall, because I can see daylight later in the day, but know I will pay. Winter is terrible for me with the joint pain. I have severe muscle breakdown due to the illness and severe Vitamin D deficiency. I may also be Vitamin A and K deficient and have to watch my kidneys due to the Vitamin D. I eat organic, when I eat. I cannot have alot of protein due to the Porphyria and Lupus. I eat mostly raw foods, and have to keep a medium to high sugar intake during attacks. I check my glucose on the days that are bad so I will not develop diabetes. I sleep alot, and am working on remission. I plan to ask for a bone scan, and test the Porphyria theory with the Plaquenil with my rheumie to see if the connection with my Porphyria flares is with med. I have Epilepsy as a result of the Porphyria and Lupus, either sleep alot or do not sleep at all. When lack of sleep and flares, my glucose constantly falls and I have mini seizures. I have to avoid stress at all costs. I have been falling lately. I also just moved closer to the hospitals, my job and my friends near the Art Community to be easier for me. My new apartment does have an elevator but I make myself take the stairs except with groceries.

Life is complicated. To go out I must be home by 830am and cannot go out until 6pm or sometimes later. I have tinted windows on my car. I cover up constantly, wear baseball caps to work LOL, and still flare from the Florescent lights. I have blisters on my cheeks now, so no blush required. I also swell and take herbs to control the edema. I do push myself to get up and exercise, although the past month has been rough, I still push. I am falling lately but take it in stride. I do wear knee braces and sometimes I feel like a cane would be helpful but have not yet gotten one. My pain levels are never below a 5 but most days I can cope until they are an 8. I cannot take alot of pain meds or other meds like most people due to the Porphyria, so my care is more complicated. I see many doctors, my PCP, Rheumie, Endochronoligist, Psychiatrist as needed, Neuro as needed, Cardiologist, Dermatologist, Allergist/Asthma, Opthalmologist, and Adult Genetics doc.

Allergies include meds, like Penicillin, Sulpha, Cephalasporins, Mold, Artificial dyes, Pork and Pork derived drugs, dye used for contrast scans, Multiple chemical sensitivity, etc.

I did not post this to complain but to share how my daily life is. I hope this will make someone feel like they are not alone too.

Take care,
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.

Post Edited (Leta) : 6/2/2007 3:30:28 PM (GMT-6)

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 6/2/2007 8:02 PM (GMT -6)   
Nice idea Leta.

I am 40 and have 2 great kids (9 & 5) and a very supportive husband. You can see most of my health history in my signature, but I think having a severe case of mono what I was 18 kind of started everything for me, however, I did have a lot of healthy active years before getting lupus. Prior to getting sick I was an avid runner and was very into fitness and health. I got first lupus symptoms about 3 and a half years ago and I could tell that something was really wrong. My pcp ran a lot of labs and my ANA came back positive along with an elevated sed rate.

It took me two and a half years and my 3rd rheumy to get a diagnosis and treatment that has helped. I got sick enough that I had to quit my job, but at least now I have more energy for my family. There are some days that are pretty good days now, but I still have flares and realize that I've had to re-define what a "good" day is. Even good days mean some degree of pain and fatigue that requires resting or napping. I'm also trying to find new passions since I can't run anymore (although I still hold onto some hopes of maybe doing some light jogging someday).

Living with this illness has been a challenge for me and my family, but we continue to try to adjust and figure out how to live with it. My life has changed a lot and I go through some periods of grief. However, I also see all the blessings I still have and try remain thankful for those. In addition to my health problems my 9 year old son has arthritis cause either by JRA or possibly by untreated rheumatic fever - he also has a positive ANA, so he's seeing various specialists trying to help him and figure out exactly what is going on.

I look forward to reading other people's stories.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Regular Member

Date Joined Jul 2006
Total Posts : 150
   Posted 6/2/2007 9:04 PM (GMT -6)   
Hey everybody. I am 46 and I have a great husband and 2 wonderful children and daughter-in-law. My son is 25, married and is in med school at Emory in Atlanta. My daughter is 18 and graduated high school 2 weeks ago. I still manage to work fulltime for an Optometrist. I used to be quite athletic also. I also enjoyed running.

Anyway about a year ago I started running a fever every day and had joint and muscle pain. I was also extremely fatigued all the time. I went to my PCP and she started the same thing as always. Maybe its depression or maybe its hormones since I was 45. Yadda Yadda Yadda. Anyway, she did blood work and I had a positve ANA. I think it actually surprised her that something may really be wrong with me. It took me 3 months to get in to see a Rheumy. He put me on Plaquenil and Naprosyn and I am still on those 2 meds for now. My diagnosis is UCTD for now. He suspects Lupus and/or Sjogrens. My blood work also suggests possible limited scleroderma. I don't feel like my meds are helping as much now so I figure I will have a med change soon.

This was a great idea. I am looking forward to reading about everybody. Everyone take care.
UCTD, Hypertension
Meds:  Plaquenil, Naproxen, Hyzaar, Cymbalta, multi-vitamin

Regular Member

Date Joined Oct 2003
Total Posts : 262
   Posted 6/2/2007 11:51 PM (GMT -6)   
that's crazy bamagal, i see my transplant nephrologist at emory in atlanta, hey everybody, i'm 25 and married, no kids yet (hopefully soon though) i was diagnosed at 13 and its been an uphill battle ever since, i had a kidney transplant in April "06 (my dad was my donor) and now i am in another flare, although i didnt have any symptoms, my doc said that from now on that i probably wont have any physical symptoms and it will just be in the kidney (although i am not exactly sure what that means). my husband is very supportive and military so life isnt exactly stable for me, but what can you do, you marry the man not the career. the only childhood problems that i had was chronic ear infections every spring until about a year before i was diagnosed. They found out what i had rather quickly, now that i look back i think i started have joint problems and some swelling in the hands the summer before i was diagnosed, but it only took them a week or two the following spring to figure out it was lupus, probably because it had attacked my kidneys from the very beginning. in the doctor department i have been very fortunate, every doc that i have gotten along with every doc that i have had and my family has been very supportive probably since we have all dealt with this for soo long. After my transplant last april, they said it was a possiblity that i would not flare again, but because i'm so "special" i fell into the 10% of transplant patients with lupus that did flare, so my doc has me on prednisone but i am starting to taper and they upped my cellcept to 2000mg a day, hopefully this will work cuz i hate being sick, i that feeling where your brain says do this and do that and your body says yea right. the doc is also very optimistic that after i get over my flare and i am stable (whatever that means) we can try to have a baby. well i think that's it, cant wait to read about everyone else.
Hugs and prayers,
diagnosed in May '95 with lupus nephritis, hypertension,hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 6/3/2007 12:45 AM (GMT -6)   
Great idea, Leta!
   I'm 49 years old, divorced with 2 kids. My son is 25, just recently married. He is a forman for a High Tech Roofing company here. My daughter just graduated from UAB, in alabama, she will be moving to atlanta soon to start her new job.
   My symptoms started when I was 19 after being at the beach for a week of tanning and all day activities in the sun. I got strep throat a couple of days later when I got home and was very sick for about 3 months. I continued to get strep throat off and on for the next year. Did fine after that for awhile.
   Joined the Air Force 1979 I was still 20, feeling good and no symptoms at the time. In basic training started having problems with my legs running and pluerisy in my ribs but, made it through. Just some minor aches and pains over the next 3 years while serving in England.
   When I came out of the military in 1983,I started getting rashes and more symptoms from the sun. Thats when I was getting all the, "your allergic to the sun", you need a vacation, you have the flu or a virus junk from doctors.
   Finally, in 1990 when I was having problems working, getting out of the bed, extreme fatigue, and bad rashes. I saw a dermatologist and he said, " I think you have lupus", he did a biopsy that was positive and sent me to another doctor that confirmed it with blood tests.
   Since then I have had alot of ups and downs, mild to severe. Some organ involvement but, over all doing well right now.
   Looking forward to hearing from the others as well.
                                                          Love, Babs
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Regular Member

Date Joined Apr 2007
Total Posts : 28
   Posted 6/3/2007 1:15 AM (GMT -6)   

Good Idea!  My name is Jen and I am 25 years old.  I was diagnosed with Lupus when I was 17.

I only joined the forums awhile ago, but I'll re-introduce myself, anyways :-) .

My problems began when I was in grade 11.  At the time I was taking Tetracycline (for acne, I think) and had only been on it for awhile.  I remember warming up for a volleyball tourney I was playing in one early morning and my fingers kind of felt stiff.  I found this to be odd as I had never been one to feel stiff or sore in the mornings.  Anyways, I didn't think much of it.  I had decided to go off the Tetracycline because it wasn't doing what I had hoped it would.  A couple months later, I decided to give it another go.  I took ONE PILL of Tetracycline and all of a sudden, my hands and fingers swelled and became VERY stiff and VERY sore.  My Mom took me to Emerg, where the doctor I saw was baffled.  I was crying because I didn't know what was going on with me.  Eventually, all my joints became swollen and sore and stiff.

After seeing my family doctor and getting tests done, I was referred to a rheumy, who did more tests.  Finally, in the summer before I was about to enter 12th grade, I was diagnosed with Lupus.  I was put on the appropriate meds.  Luckily I didn't miss much school, but I did have to stop playing volleyball and all the other sports I was in.  I couldn't partake in Phys Ed, couldn't workout or do anything active - I was just too sore.  I never told anyone about my Lupus in High School.  When people asked why I was walking "funny" or why I went down the stairs so slowly, I would make up some excuse like, "Oh, I hurt my ankle the other day" etc.  I remember feeling like such a "dork" because my boyfriend had to zip up my jacket or that my Mom had to sometimes dry me off when I got out of the shower, because I couldn't do it myself.

I took one year off after highschool.  I think that was the best for my health.  I was still in pretty rough shape and I think going straight into College would have been too much stress.

By the time I did go to College, my health had significantly improved.  I was still on all my meds, but was able to move A LOT better.  I felt a lot better.  Eventually (6 years after my diagnosis) I was off all meds and feeling "perfect".

In January of this year my boyfriend and I left to SE Asia.  I had brought some of my Lupus meds with me "just in case".  I didn't think I would have to actually use them...

I have never had problems with the sun until February 2007.  Everyday my boyfriend and I would lie on the beach and suntan.  Desite wearing sunscreen, my Lupus "came back".  My wrists started feeling a bit stiff.  A couple days later the stiffness moved into my elbows as well, until by the end of March, my whole body was stiff and achey.  I was immediately in contact with my rheumy back at home who put me back on my meds.  I was able to get all the required tests and meds I needed, here in Asia (Thank Goodness!). 

Now I am currently on the meds that are in my signature.  I'll admit, I'm REALLY BUMMED that my Lupus came back.  Maybe it wasn't really gone, though.  Maybe it was just hiding - waiting to resurface when everything else in my life seemed to be going perfectly.  I can't let it bring me down, though.  It stole much of my youth already and I'm not about to just give up!!


25, currently backpacking SE Asia
Diagnosed with Lupus: 1999
Daily meds: 400mg Plaquenil, 150mg Voltaren, 15mg Prednisone

Regular Member

Date Joined Apr 2007
Total Posts : 104
   Posted 6/3/2007 8:25 AM (GMT -6)   

Hi there - Great idea!!!

I am a 41 female, happily married with no kids (I have another condition that will not allow me to concieve - naturally anyway).   

I too was very active and outgoing - always entertaining etc.  about 5 years ago, I started feeling tired a lot and I had extreme joint pain.  I would need assistance to stand up at times, couldn't make a fist, had swollen, red hot joints and I couldn't make it up the stairs without stopping at the top to rest because of the pain in my legs.  My GP ran some tests and told me what I didn't have but asked if I wanted to get to the root of my problems and I said yes.

I went to a Rheumy and a Vascular Surgeon about 3 years ago.  Initially, I was diagnosed with Raynauds.  Next, hardening of the arteries (that one makes me mad because I don't eat red meat, I watch my diet and I have never had problems with my cholesterol but apparently, its in my genes - lucky me!!).  Next came the pleurisy (1 1/2 years ago) and thats when the Rheumy started leaning towards Lupus but wouldn't give me the diagnosis at first.  My ANA continued to climb and I was finally diagnosed (I've known for a while as I'm sure a lot of us had before getting officially diagnosed).  To be honest, I was happy to get a diagnosis because it did explain a lot and I wasn't losing my mind - I really didn't have any "get up and go" somedays.  I find that part the worst - the fatigue.  

I am actually going to start my meds tomorrow (was supposed to be a couple of months ago she had to cancel my appointment and the next available date was tomorrow).  At my last appointment, my rheumy wanted to run one more set of tests (I've already seen her report to my GP).  I am afraid of the steroids to be honest (I don't want to gain weight!!!) but if it will help with the pain, I'll stay away from the bread... lol

I have my own business so I too work full time and that can be difficult.  My husband is very supportive now (and I stress  This forum has helped him to understand me a lot better.  When I do things around the house, he truly appreciates the effort involved and always tells me not to overdo it.  We are working towards me retiring from work... :) 

I have a great life and I always try to stay positive!! 


Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 6/3/2007 9:38 AM (GMT -6)   
My user name came from the rash on my checks- one day it was as red as the rose my current husband had brought me for my birthday. If you can't tell from that clue I have been married before this but only 1 time before and it was to a very abusive man. My childhood and first marriage were a horror story. I have had 4 babies now have 2 live children custody of none thanks to my divorce. But I did some creative deal making with my ex so that he doesn't have my girls either and he never sees them but I have regular contact.

As to my disease- I was born sickly- the doctors kept saying I would die before I got to X age. I will be 30 this summer. They had no clue why I was so ill but knew I couldn't survive it. pnemonia, broncitis, chronic ear and throat infections, the works. When I was 13 horrible pain in my upper right side mis-diagnosed as a stomach ulcer. In late 2005 I ended up having my gallbladder rermoved due to complete failure after my stomach was scoped and no evidence of my ever having had any ulcers was found- and apparently those things leave scare tissue even if they heal. So I suffered from 13 until 28 with gallbladder pain and no one believed it was my gallbladder. Heck most of the time I was told the pain was in my head- one doctor offered to commit me to a psychiatric hospital during one of the more painful episodes. The gallbladder failure was from inflammation caused by the lupus by the looks of things. You can see in my signature my dxes and txes. I fought since I was 13 to be heard. I was also getting the malar rash and pain in my joints at that time but it wasn't enough for any tx. At 20 I got pericarditis but no one thought anything of it. I have had chronic pluersy since childhood so that was blown off too as were the mouth ulcers. My hair falling out- no one believed me except those who saw the evidence in my drain and on my comb, pillow, clothing, etc.... I had nearly given up when finally I found the rheumy willing to dx me. Monday I go to court for a hearing about my disability/SSI case- my lawyer thinks I will win. I am not as strong as I was even 2 years ago and am in constant pain of the 6-7 level with it getting as high as 9 some days. I will see pain intervention the end of June. I hope I survive the pain that long without losing my sanity.
I hope others will benifit from my experiences and that I can help you. I am rushing off to see my girls this morning and also not feeling well.

Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005, probable lupus CNS involvement 2007

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 6/3/2007 11:02 AM (GMT -6)   
Hi, I'm Pat and I have to admit it's hard to read everyone's stories and to know how hard life has been for you folks.

I'm 58, remarried for 9 years to a remarkable guy, mother of three, stepmother of three, and grandmother of 2 little girls. I've been lucky all my life and though I suspected I had lupus since I was 30, I haven't really been sick until the past three years. I was born in the US and moved to South America when a toddler and spent 20 years there. Studied languages in college, traveled, then married a guy from Oklahoma and moved here. We were married for 23 years and had a great family life, but he was a lousy husband.

My baby is a 19 year old girl who's in college. My second kid is 29, married and lives in town. He works for a family business and writes zoning reports, but when his wife finishes her master's in accounting, he wants to go back to school to get his masters and then teach graphic design at the college level. My oldest son is a petroleum engineer and works for a major oil company. Now I'll have to bore you with my evening last night.
My son's girlfriend graduated from pharmacy school yesterday so last night we went to a dinner party given by her parents. Before the meal was served, my son stood up as though to make a toast, and after a few words, got down on one knee and proposed to her! We were all so surprised and I started crying. I love her to death (as I do my other son's wife) and was hoping they would get married. I think I'll start knitting booties.

My stepkids all live in town and are 31, 27, and 22, and are all single. The oldest, my stepdaughter, is divorced and has two precious little girls 6 and 8 and my hubby and I are Pappy and Mamita to them. They spend a lot of time with us and are a real joy.

My mother had lupus and for years I knew I did too, but it was very mild. I would have short periods a couple of times a year where I would come down with a fever, joint pain, and fatigue so bad that I couldn't get out of bed. I had renaud's and the butterfly rash, but the periods would only last for a week or two. I would get sick any time I went on vacation to the beach. My first rheumy told me 20 years ago that he thought I had lupus and RA, but I got better so didn't take meds or get a diagnosis. Most of that time, however, I was in excellent health. Three years ago, however, I was down for 3 months during which time I was totally incapacitated by fatigue. I had joint pain, headaches, fevers, gastrointestinal problems, and so on. That's when I saw my fourth rheumy who diagnosed me and put me on plaquenil and prednisone. The past three years have been pretty rough and it was about a year ago that I was put on 60mg of prednisone and started gaining weight. I've always been slim and fairly athletic. My girlfriends and I used to go to a health spa where we would walk 10 miles a day, hike, do yoga, etc. all day for a week at a time. Now it's all I can do to walk around the block, and that's on a good day.

My hubby and the rest of my family are very supportive and don't question me when I'm too tired or sick to go somewhere with them, which is most of the time. I changed rheumy's a few months ago because the woman I was seeing was prednisone crazy and I reached a point where I thought the side-effects of the prednisone were doing more harm than good. My new rheumy put me on CellCept and since then I have slowly started to improve. I have more and more good days and I do believe that I will get better. Thankfully, I have had no organ involvement. I retired 8 years ago after having been a stockbroker, and bought and rehabbed some rental property and am now downsizing that little business so that I can devote my time to getting better. I have become an avid knitter and love having something creative to do that requires no energy. I used to read two or three books a week and because of my brain fog, I have only read two books in the past year. I also read the newspaper every day of my life, but haven't read one in months. I look forward to getting back to reading some day soon.

I believe that without this forum I wouldn't be doing as well as I am today. You folks helped me when my family didn't understand what I was going through. And seeing how much sicker some of you are than I helps me keep things in perspective. But the most wonderful thing about this forum is having somewhere to go every day when I'm feeling isolated and lonely. I don't like to talk about my illness with my family and friends, but I need to have somewhere to go to talk about what I'm going though and you guys are always there for me. So a great big THANK YOU to all my friends here.

Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Jan 2007
Total Posts : 607
   Posted 6/3/2007 12:14 PM (GMT -6)   
Hi I am Omega. I was diagnosed with MCTD when I was 17, and few years ago it changes to Lupus. I am now 34, married with no kids. I suspect that I had some sort of MCTD when I was 15 because my knee caps were hurting and both my feet were swollen one day and went away few days after. When I was 16, my raynaud was so bad. Then when I was 17, I went to suntanning, lo and behold, the rash broke out. I went to see my family doctor. She took blood test and sent me to a Rhumty right away. This Rhumty was nice but not aggressive. He only prescribed me NASIDs, so I was in constant pain and sometimes rashes broke out and I got scared. I studied in Canada @ that time, so my family were not with me. After I went back to Hong Kong, I saw a Rhumty then is overly aggressive as per my third Rhumty. The second one prescribed me 20 mg Pred to keep me symptoms free. Then I went to the third one and tapped me down to 5-10mg with 200 mg Plaquneil.
I had kidney surgery due to a blood vessel on top of the Right urine tract. I was in constant back pain for few years until after this open surgery.
Then I had a bad flare, polymysotitus. I could barely walk. Then I was on 30 mg Pred and 400 mg Plaq. I had to stay home for 3 weeks. It was a "good" vacation from work (LOL). Now I am in the States. I had an enjoyable moment where the Pred was down to 5 mg, but not last long (LOL).
Recently I have a constant flare, one symptom after another (glad that not come all @ once). Those also the symptoms I never had before (vasculitius, bad mouth ulcer, bad oral herpes). My Pred is up to 10mg and plus five 500mg Cellcept. I could not take Plaquneil due to the toxicity. I could not take Imuran either. I had a bad reaction when I had to stay in the hospital for 10 days and lost all my hairs, extremely low white blood cell, low palatet (hope spell right) and terrible mouth ulcer. That time I looked like a chemo person.
Oh yeah. I have no organ involvements so far.
I am so glad for this website because there are many supports and good people here.
I think that's about it.

Veteran Member

Date Joined Jan 2004
Total Posts : 4151
   Posted 6/4/2007 2:56 PM (GMT -6)   
Hi everyone, I'm Des and I'm 31, married, with one child (son) who is 13.

I think it all started for me in April 2003 when I got really ill. Fever of 103 to 104 (went up and down), aches, chills, weakness for almost two weeks. I never went to the doctor no matter how much my husband begged because I didn't have the strength.

I finally got over that and went almost 3 years feeling horrible. Fatigued, low grade fevers, joint pains; all over run down feeling. My family and co-workers finally convinced me to see my doctor as they all thought I had mono. Went to the doctor and explained my symptoms and asked him to test for mono. He did but also tested other things that I didn't know of.

When he got my test results, he told me that he wanted to send me to a rheumatologist because of some abnormal blood results (ANA and sed rate elevated). I saw my first rheumy which made me feel stupid because he said, "you are here for a Lupus diagnosis, right?" I didn't know anything about Lupus and my doc didn't tell me anything specifically why he was sending me to a rheumy. Well against his suspicisions (as he put it), my rheumy sent me for additional tests and my anti-Ro antibodies were postive. He sent me away and said that I have Sjogren's and take these NSAIDs.

I walked out without any knowledge of Sjogren's (in fact I called my husband on the way home for the doctor's office to look what it was on the internet because thats what the doc told me to do ARGH). Well, everytime I went to my rheumy appts. the doctor was so rude and maybe spent 2 minutes maximum with me. Everytime I questioned why I didn't have dryness which is the hallmark symptom of Sjogren's, he basically just dismissed me. I decided never to see him again.

Months later, I was still feeling awful (and getting worse) and decided it was time to see another rheumy. In those few months, I started developing rashes that I never had before. My new rheumy ran more tests and did a full examination (which the other rheumy did not) and noticed my rashes, mouth and nose sores, thinning hair; his tests revealed that my inflammation was still elevated. He told me that he believes I have Sjogren's as my eyes were a bit dry and the confirmation of the anti-Ro antibodies but I had more going on with me than just Sjogren's. He diagnosed me with UCTD and strongly believes I have Lupus/Sjogren's overlap.
Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements

Veteran Member

Date Joined Jan 2007
Total Posts : 2446
   Posted 6/4/2007 6:40 PM (GMT -6)   
Hi everyone......I'm Jen, 40 yrs old, no kids. I live in Montreal Canada. I have a wonderful caring boyfriend.
I work as a senior MRO buyer and have 3 wonderful cats. I love cats and save all the stays.
I got sick 12 yrs ago and went through all the battery of tests. At first I was told I had CFS, then was told it was in my head, then that I may have lupus. When I saw the Rheum for the first time 12 yrs ago, I didn't feel I had lupus, so I left his office and never went back.
I went through good and bad days and many yrs of more tests.
I went every yr for my physicals and this past one (Last Dec), my ANA was pretty high and my joint pain was pretty bad, I finally agreed to go back to the Rheum. He sent me for more tests and said "lupus" again.
So here I am........
I'm a gym buff (well less now)/ I but was overweight 8 yrs ago and decided to change my life. I went from a size 14 to a 3 in 6 months and felt great. I still keep it up today. The gym is my ONLY savior!
I've also suffered from panic/anxiety attacks since I was 18, which also changed my life. I have a great family. Parents married for 50 yrs. I have two older sisters and my family has been supportive.
I'm pretty much a happy person with a bitter hue ;-)

Here is a pic of me and my boyfriend (post pics folks....would be cool to see you)

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 6/6/2007 4:51 AM (GMT -6)   

Hi my names carol, I'm a widow. I'll be 50 in 10 days. (sob). I have a son that is xmilitary. he's divorced but has 2 baby girls. He's 26. my g-babies are 7 and 4.

I was actually being treated for COPD when they started running tests which indicated possible lupus. These were done by two different pulmonologist. They both just said it was hard to beleive I could have copd in my 40's to the point where I needed to be on oxygen. I refused to go through any more tests to find out about the lupus. I felt it was enough to deal with copd I didn't want to hear about anything else. Plus I figured if lupus was a problem I'd find out sooner or later. ( I was stupid).

Anyway I felt sick for years. no energy fevers in and out of hospitals. Finally I moved to oklahoma. I didn't have a regular doctor yet and of course the move set me into what I now know was THE FLARE FROM HELL. Moving to oklahoma actually was a God send as far as dealing with lupus. Every doctor I went to mentioned lupus and ran tests coming back with things like anemia, high sed rates, possitive ana's. I couldn't figure out why every doctor was checking for the same thing since I never had mentioned it. Well what I finally discovered is   that oklahoma has a large population of native americans and a large population of us have lupus. So doctors are more trained to see this out here. I have read native americans are between 3 and 10 times more likely to have lupus than european americans. You'd think they would have better rheumy's than but NOOOOOOOOOO! Anyway, my internest saw the (spider veins) on my chest and ask if she could look at my back. My back has than really bad. all the time. at that time my knees to my toes were bright red and swollen. My feet were bleeding on the tops of them from being so swollen they split. She sent me to a rheummy that was a 4 hour trip and he was a total jerk. He didn't tell me anything but told my doctor it was lupus. I'm not satified with his diagnosis. I want somone younger someone that will talk to me and explain things to me. My internist is taking care of all my needs right now. but she said when i get my insurance straightened aroundshe wants me to get a new rheumy. So that's where I'm at right now. I know I left lots of gaps in this but I did the best I could considering it's 4:30 in the morning LOL




God Bless
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , vicodin.5x3, Evista for osteo,. oxygen Plaquanil800mil, . effexor. spiriva, xopenex.
Come ye, all that are weary and heavy laden, and I will give you rest!

Regular Member

Date Joined Jan 2007
Total Posts : 279
   Posted 6/6/2007 6:44 AM (GMT -6)   
Hi everyone,

I'm Sue and I'm 52 years old. Thanks for sharing. Wow, did you all find this as difficult as I am finding it? It is so hard to be concise and coherent.

Looking back, I think I have been slightly ill all my life but about three years ago I started slowly getting more fatigued so that by a year ago I was struggling just to get through the day teaching (I'm a college professor) and taking care of my home life (two children - a college aged daughter currently off in Morocco between her sophomore and junior years, and a son who is autistic and trying to finish high school with just one extra year next year, 9 cats (all spayed and nuetered) and 1 dog). My primary care physician sent me to a hematologist who sent me to a rhuematologist who diagnosed me with MCTD (mixed connective tissue disease). This process took that year and it was about a year ago I got the diagnosis.

The rhuemie was not at all aggressive and last summer was filled with pain which no NSAID could touch, muscle loss, fatigue, depression, swelling of the fingers, etc. A change of rhuemie resulted in prednisone and Imuran which seem to have most symptoms under control. I am fortunate, compared to many on this site. I continue to work missing only the first 10 days of the fall semester last year due to a flare but then completing the academic year without missing a class.

It is a journey I am privileged to share with the people on this site.

Stay Strong,
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg wish I could taper), Imuran (2X50mg), Prilosec (20mg), Prozac (off now)

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