Lupus symptoms and conditions

My mother actually stumbled across this site and encouraged me to look into a possible connection between my severe joint pain and the Mirena IUD. I had the IUD inserted in July of 2007. For a few months following I experienced breakthrough bleeding but that did eventually end. I suffered from some mild bouts of depression and would completely fly off the handle at my two children. Always linked it to stress. My sex drive became nil. But no other real problems to complain of. But this past Nov (2008), I started having pain in my wrists and hands. I type all day so I assumed carpel tunnel. Then we began a kitchen remodel. After one particularly tough day of demolition, moving and climbing up and down stairs, I became really stiff and sore. Of course I didn't think much of it until a week later when the pain was getting worse, not better. After a few more weeks, the joint pain became so severe that I could not get up and down off the couch, off the toilet, out of the car, without wincing in pain. I felt 90 years old! My doctor had prescribed Naproxen (which wasn't helping at all) and gave me a course of Prednisone. The Prednisone made me feel like a million dollars. Problem is, you can't stay on it. That's when we found this site. I immediately called my OB/GYN and had the IUD removed 2 days later. Of course, doc didn't believe this could be the issue (Surprise, Surprise!). Once the course of Prednisone was over, the joint pain gradually came back, albeit not as bad as the first time. RA and Lupus panels were negative, no thyroid disorder, no diabetes. Going to see a Rheumatologist next month so we'll see. I can mention that I already see a difference in my moods. I feel more patient with my children lately and that alone was worth having the stupid IUD out.

I have had my Mirena for 4 months now and I have also been miserable. I have been to my MD, tested for thyroid and diabetes. I went to my eye doctor because of weird vision problems. Weight gain even with exercise, bloated feeling, tired, hip and knee pain, back pain, hair loss...now I know it's all due to Mirena. I thought I was suffering from hypocondria since my doctor could not find anything wrong with me. I can't wait to have this removed, but at age 39 with 6 month old infant, I'm not sure what birth control method will be better.

WOW! My jaw is on the floor. I have been taking Simvastatin for 4 years! At around that time I started feeling ill. I ended up in the infection clinic. There they did 6 spinal taps since they could not understand why I had this major headache, and stablike pains.
I was hospitalized for 2 weeks and during the last 4 years I have been in and out of hospitals and doctors.
After they found 'nothing' they told me that I might have LUPUS/RA. So they started me on drugs to treat reumatism. I was on 2000mg per day! Complained and said that the meds where not working and I needed help and someone to listen to what I was saying. Then one of the many doctors I had was telling me to shut up and go see a psychiatrist. That got to me and so I started writing letters. I got a 'new' doctor and he said odd. Told me he was only interested in my joints. After the second time w him he passed away and so I met a fresh doctor, on that was right out of med school.
She looked at me and said...*You cant go on living like this, this is no life.* she sent me to the hospital for 2 weeks so that I could get the right treatment. There they realized that I have no sings of reumatisum but rather a connection w Simvastatin.
They right away told me to stop taking all the reumatisum medication and they will now focus on removing Simvastatin.
I am blown away.... I was so sick, so may hours lost from work, family and friends. I almost left my husband because I felt like I was just 'there' not ever being able to do things. I was so sick all the time.
Wow is the only word I have in my head right now- I am in a shock.

I had my demon mirena inserted in July 2004 after the birth of my son. Since then my life has been one nightmare after another. I have had body/muscle aches, swelling in ankles and hands. Slight fever all the time, skin rashes, dizziness, depression, my hair texture changed, insomnia, and night sweats. I was so tired I couldn't even do normal daily activities. My mood swings were so severe I began to think I was bipolar. I have been to about 15 different doctors over the past 4 years and I have been diagnosed with everything from Rheumatoid Arthritis to Lupus to Graves Disease and after finding this blog and others I know realize it's my Mirena! I called my doctor and am having it removed ASAP! She agreed that is was more than likely the mirena that has been ruining my life for the past 4 years. I didn't equate my symptoms with the mirena because they didn't start until about 7 months after I had it inserted. It was SO not worth it. I would have MUCH rather had another child than to go through all this misery for four years. I can not wait to get this thing out of my body.

OH MY GOSH! I thought I was crazy until I found this site. Ok, I had my Mirena inserted January of 2007, and IMMEDIATELY experienced joint pain, pain in my hands and feet, and it's 22 months later.. the pain NEVER went away. I thought because I was a very hardcore athlete when I was younger, that this was par for the course, that I will be getting arthritis. I'm 34 years old. Crazy to say arthritis at 34? I think so. Well, I have been researching my symptoms for months and months online and gone to a few different doctors over this. My symptoms include chronic fatigue, headaches (on a good week 4 days out of the week), joint pain in my hands and feet, sensations in my hands and feet that feel like they are swollen (but they aren't), upper and lower back pain, heart palpitations, leg cramps, hair loss, ABSOLUTELY NO SEX DRIVE AT ALL, muscle fatigue, and I've gained 40 lbs since I had it put in... OUCH. NONE of this (except for headaches and some depression) was experienced before the Mirena. Funny, I never linked it to the Mirena. I've had my thyroid checked, been diagnosed with carpal tunnel (lol what about my feet? Good doc!) had blood sugar checked (nope, not diabetes!), well, now I'm on to getting checked for fibromyalgia. Kinda wondering though, if there is a link to fibromyalgia and Mirena, like it could induce it? Sounds like so many of you have the same symptoms, and many have thought the same things... fibro, diabetes, lupus, ms, hell, I even though lyme disease at one point. This is ridiculous... I'm having it out this week.

I have been on Yasmin for about 5 years. I have never had an issue. I am worried that everyone on this site is making Yasmin look bad. You all need to remember that not everything will work for every person, everyones hormones are different to begin with so when you add the pill to these different levels of hormones you will get different side effects. To the people with low sex drive, did you perhaps think that this could be due to depression or the aging process? Many women suffer from low sex drive, those on and off the pill. Your sex drive will not be consistent throughout life, mine dropped in my early 20s and now is rising again, it may drop again, it can also be due to stress. All that said if you're suffering side effects that you think are attributed to Yasmin, or any other pill, stop taking it! Not everyone's body will handle it.

Since my daughter second gardasil shot she has become tired all the time, she passed out on November 10 and was taken to the doctor. She orderd an EKG, chest xray and blood work. They called me that night and said she has an irregular slow heart beat ( which she has never had before). We went to a heart specialist the next day, he did an echo cardiogram and said things looked fine. If she passed out again, for me to call him and he sent us on our way. Tonight, while she was walking at work, it happend again. We went to E.R. and basically were told to follow up with her doctors on Monday. She is supposed to get the third shot in December, now i am afraid for her to get it. Im wondering if her suddenly getting the slow irregular heart beat, and passing out, irregular period, and headache is connected to the Gardasil. She is 17 and a senior in High School, she was planning on going to college, but now she is afraid to be alone, drive, or do anything that typical teenagers do.

My name is Heather I am now 32 years old I took levaquin when i was 29. After i took levaquin I went on a roller coaster ride I have yet to be able to get off of. First when i took it I had the worst night mares i have ever had only to wake up to a splitting headache and a very sore body. took another one the next day same reaction.I figured it was the bronchitis that was causing the problem. on the third day i was worse still I could hardly move. I stopped taking the drug. after another two days i felt better. two weeks later I was out with my father and he noticed a rash on my legs. I was also starting to get little blood blisters. I started to become concerned and the next day after going to the zoo with my family i came home and my legs were swollen three times there normal size and very sore. I put them up just to find the felt like play dough had been stuffed in to them and I had blood blisters the size of pencil erasers. I made an appointment to see the doctor. he said and i Quote " Heather I have No idea what the Hell you have" he sent me to a specialist. between the time of my first appointment and the appointment with the specialist my legs stopped working from the hips down i was 90% paralyzed (not spelled right ) they just wouldn't work right. My ten year old daughter was helping me get to the bathroom. I was soooo sick i had a headache all the time couldn't eat or sleep and when i did it was only for a few hours I couldn't move very well and to get up out of bed hurt so bad i almost fell every morning. by the time i had gotten to the specialist I had gone to the E.R. three times for the pain.and the last time was because my toes stopped moving altogether. at the appointment the doctor ran all kinds of tests checking me for everything from S.T.D.s (which i have been happily married for years) to Lupus. I felt Like and 80 year old Lady And like i said i was only 29. after the extensive tests and everything coming back normal the doctor put me on a steriod. for 4 months i was told i had to take prednisone After the first dose i could move again I still hurt but i could move.But now i had the side effect from that. i was gaining weight like it was going out of style, but at least i could move. after the 4 months things seemed normal kinda. I could move but if i sit still to long my legs go numb not fall sleep go completely numb even if i am standing to long. I am still afraid that i will wake up again feeling like i did that Fall three years ago. I still have problems but im not sure they are tied in but it wouldn't surprise me in the least. I only took three Pills of Levaquin three years ago!!!! How long does this stuff hang on really??????

My daughter had just about every reaction mentioned above. She was being treated for an acute flare of SLE (Lupus in the worst form.) Not only did she lose her kidneys (19 yrs old, second year in Pre-med at Baylor University. She began seeing strange "black ghosts" while in CCICU. The nurse talked to the Doc, he says oh, its only "ICU Psychosis". What??? She wasn't hallucinating, just strange vision. The came the pressure in her head. No one bothered to call in an Optho, so they did Lumbar Puncture after Lumber Puncture. They released us with the pressures still high. Suddenly, my baby sat up and said "Mother is my right eye open?" It was...I jumped into action, got her to a local doc who sent us running to Houston...my daughter lost all of her sight in her right eye and most of it iin her left, she has no peripheral vision or color in the tiny bit of vision she has. The depression is killing her. Her doctor says "yeah, it happend...200 out of 1000. Can you imagine..all he had to do was has a doc use his little light,look behind her eyes and my precious daughter would be simply waiting on a kidney and then back to medicine. Please don't let this happen to you or a loved one...insist that they call in an eye doctor. Our lives will never be the same.

October 22, 1998 I had resp. failure (with intubation). My new pulmonary doctor put me on Singulair 10 mg once a day, a few weeks after. Within time, I started to have numbing and tingling in my face, arms, and legs. March of 1999 the symptoms worsened and started causing pressure in my face, arms, and legs, and anxiety started to kick in. I was told I had neuropathy and to take mobic. Symptoms getting worse, and went to a rheumatologist in June 1999, and he was suspect of singulair. The doctor thought that what I was experiencing was due to the singulair. He (the rheumatologist) discussed this with the pulmonary doctor and the pulmonary doctor did not believe this to be the case. Not forgetting, in March of 1999, I had a ct of the sinus area, and low and behold 1/3 of the cavity was and probably still is full of polyps.

As time went on, symptoms getting worse, and not one bloody doctor could figure out why I was feeling this way. In addition, at times, I was put on steroids for my asthma (not including my inhalers).

Two years ago, my body went into shock, leaving my left side very different than my right side. Affecting: my head, my face, my eye, my ear, my esophogus, my lungs, my arm, my leg.

I have been depressed and anxious not knowing what the heck was going on with me.

Recently ruled out thyroid, and lupus, and possibly ms.

Last weekend, I reviewed the letter from the rheumatologist (dated 1999) and the ct report from March 1999 (regarding the sinus/ polyps) and made copies to present to a pulmonary doctor that I have recently been seeing.

This past Monday the 10th, I had my appt with him. He knew of my situation from the last few visits (in addition, I had met him this past March for a pulmonary rehab program, and thought he seemed to be knowledgeable and compassionate). While waiting for him to enter the exam room, he had read those reports before entering.

The doctor looked at my hands (red as a beet and swollen) and said "You have Churg-Strauss Syndrome, and get off the singulair."

I had done my homework from a few weeks ago, where I looked up untreated polyps.
Untreated polyps, can turn into vasculitis. There are many types of vasculitis, to include Churg-Strauss Syndrome.

I then cross ref CSS and singulair, and low and behold, BINGO!

I have been suffering for ten years, physically and emotionally because of this drug!

There is also recent updates from the fda (fda.gov) regarding singulair, of which most recently includes anxiety and depression.

I suggest before taking singulair, be aware of the side effects. As soon as a side effect comes up, contact your doctor. Also, be aware of existing conditions (like me, sinus problems and asthma) for this could lead to churg-strauss syndrome.

This info is indicated on the actual disclosure (the paper insert that indicates studies, side effects, etc...) not the handout that is given with the drug.

By the way, I am now working with a new rheumatologist in Los Angeles (Cedar-Sinai affiliated) and a new neurologist.

mdklezmer

I am writing on behalf of my elderly parent, Carmela, who has been diagnosed with Lupus since 1991. She has been on a small dose of prednisone since her diagnosis in 1991. In the last several months she has developed very many odd hazey type grey spots all over her body. Dermatologists and doctors are not giving her any answers. They took her off predisone because they THINK this may be the cause. She is on an inhaler and does not like it. She wants to go back on the prednisone as she is feeling chest congestion and lethargy. I read an article on the internet that describes prednisone may cause unusual bruising. I'm not sure if this is what her spots are. They are only the color grey and appear to be beneath the skins surface. They are soft or hazy looking. They are small, about the size of a dime. Has anyone heard of this before in Lupus (prednisone) patience. Any info you have is sure appreciated. S. ******

I had the Mirena inserted 8 months ago and have just made an appointment to have it removed next week. My situation is made worse by my active Lupus which may be cause for some of the problems, however I'm still having it removed. My husband has believed it to be the source of my problems from day one.

I don't know what is wrong with you people but its like you can't handle anything. I had the mirena put in November last year and yeah ok i had cramping for the first month or so and yeah i had spotting. But unlike some of you fools i knew what the side effects were i read what came in the package which means i knew what to expect before i got it put in. And yeah there are loads of possible side effects but if you read everything and know what could happen you shouldn't complain if something does happen. Not everyone who has the mirena has these things and for people who are considering it i would recommend trying it and after 3 months if it doesn't feel good then get it removed. That especially goes to people that have just had a baby... i mean really in the first 3 months after having a baby who is really seriously interested in sex right away. The reason i am here was to see if there was more information about them now because UNFORTUNATELY i had to have mine removed for an operation. I had a cyst on my fallopian tube which was not mirena related. In fact almost all women get them when they are menstruating but they go away. Unfortunately with me they don't go away and this is the 2nd cyst to be removed in 3 years. I am planning on getting a second mirena inserted next week. Because frankly i find it ideal. And yeah i may have had mood swings on occasion while i had it but come on think about it what woman doesn't have mood swings. So sure you can blame everything on the Mirena but for the most part besides then for the people where the mirena got stuck or moved during the time you had it... its all in your head. And like i said before i would recommend the mirena and if after 3 or 4 months it doesn't suit you then go for something else... but don't dismiss it because some people have too much time on their hands and like to spend it whining over everything on the net. Remember with the Mirena you have a 50/50 chance of having symptoms or not. Take that risk before taking the risk of going on the pill and forgetting to take it or going on depo provera and putting on 20 pounds.

My hair is falling out too!! Since January I have had 2 kenalog shots for allergies and 2 shots for poison ivy. My side effects are hair loss, depression, headaches, bruise easily, swollen joints, weight gain, and a dent on my rear. These effects did not start until I had 2 shots, now it is so severe. I was so scared when my hair started falling out but knew that I didn't have Lupus or Diabetes which could cause the same side effects...I have been tested for both and do not have either.

Please let us know if there are anymore out there who have hair loss because of the Kenalog Shot.

I had my Mirena removed in May of 2008. I, too, was thrilled to find a seemingly perfect form of birth control after having 4 children. It has turned out to be a nightmare. I had horrible mood swings, intense anger, cramps, no libido, body aches and the worst part for me, hair loss. I have lost at least 50% of the hair on the top of my head. I went through countless doctor appointments - general physician, o.b., dermatologist. Back and forth with tests for thyroid, diabetes, lupus (biopsy on my scalp and blood tests) all of which have come up negative. I am still seeing the dermo and am on a steroid scalp treatment. The hair loss seems to have stopped but I have yet to see new growth. I am hopeful one day I will find new growth on my scalp. Everyone hang in there - it has to get better, right???

On October 11, 2008 my 14 year old daughter began to complain of being dizzy, headache, faintness, nausea, vomiting and stated that her heart hurt each time she took a breath. This warranted her being admitted and transferred to a specialized children's hospital. They discovered an inexplicable enzyme (troponin) surrounding her heart muscle which only appears when someone is having a heart attack. All of her echo cardiograms were normal as well as her other blood levels. She was tested for all of the typical high school diseases as well as lupus, etc. She remained in the hospital until Thursday and is now exhibiting an irregular heartbeat pattern. After visiting with her pediatrician since her release, it is extremal possible that this is a side effect of the Gardisil shots that she had this past November - February.

Has anyone experienced hives with Mirena? I had it put in about 7 weeks ago and now I seem to have broken out in hives on my arm. I have not experienced any other significant side effects so far.

Same story different person! I had my Mirena placed February 08. Three months later, I could not lose weight no matter how hard I tried. I have major hair loss, anxiety,sore muscles and joints, and extreme fatigue. Oh yeah, I forgot the memory loss and brain fog. I have been to my Drs. and have had thyroid, lupus, and other blood tests. All negative, therefore I am starting to point the finger at the Mirena! It's coming out Monday! Just can't live like this anymore!

I have been on neurontin 300 mg for only 2 weeks, if not less and I feel the weight gain. I'm either bloated or this is unbelievable. I have a disc in both my left hand and my lower back, fibromayalgia and Lupus. Therefore, the severity of my pain is unbearable. With Neurontin, there is no pain. But, there is the dizziness, weight gain, forgetfulness and just feeling incoherent and drunk. I don't think I can handle the side effects. So, I do have a question, if I've only been on neurontin for two weeks, can I just stop them on my own or do I need to speak to my Dr.? I know he will tell me not to which is why I'm asking. I have an issues with my weight and gaining weight would destroy my psyche. Thanks for listening ..it's nice to be able to find common ground with people. I don't feel so alone anymore.

I have had a "Lupus" like and "MS" like nervous/arthritic pain since I took Levaquin, have been through lots of tests, Lumbar Punctures, and blood tests, and MRI. Interesting....

I am taking Levaquin one time a day, 500 mg. for diverticultis. I have fibromyalgia so attributed symptoms of EXTREME FATIGUE to that but this is fatigue like I've never known. I can't do much of anything. I don't work outside the home so will just deal with it if it cures my infection. I'm using sleep meds too...but that could be fibromyalgia kicking in too. But fatigue is much worse. I hope it kills those bad bacteria!

I am so glad that I stumbled onto this website. I have been feeling bad for over 1 1/2 years with unexplainable symptoms all of which started around the time that I was put on Lisinopril/HCTZ 10/12.5 to help control my HBP. I started out with flu like symptoms, that progressed to terrible headaches onto chest pain that sent me to the ER. I thought I was having a heart attack. I've been to see every kind of Doctor you can name: neurologist (headaches) allergist,cardiologist (heart doctor), hematologist (bloodwork), rheumatologist (to rule out Lupus) all of which can't seem to find anything wrong with me. I mean nothing. I specifically asked my doctor some time ago if my symptoms could be could be related to the new BP meds and he told me "NO". After reading these testimonials, DON'T THINK HE'S RIGHT. I'M GETTING' A NEW PRIMARY CARE PHYSICIAN!!!!!

I thought I had Lupus because I had complete body aches for weeks. My bicep muscle in my right arm would feel like it was locked. I would wake up every morning feeling like I was in a car accident the day before. Once the body aches went away, I got blurred vision, burning in my eyes, headaches, fatigue, depression, problems concentrating... I just got this shot in June. I hope it metabolizes quickly and leaves my system w/o further side effects. I hope the indentation at the injection site fades away in time but I think it's permanent because the tissue has dissolved and the fat cells were destroyed. I wouldn't feel so bad if the indent wasn't in my face!

I can't attribute this directly to my cortisone shot - however, I've noticed that the past few months I have been losing my hair. I can pull it out virtually by the handfuls anymore! I am only 24 - this doesn't seem normal and the only change I could point to is the shot. HAS ANYONE ELSE HAD HAIR LOSS THEY CAN TIE TO A CORTISONE SHOT?

I also noticed a change in my period. Nothing as extreme as I'm reading here - but I'm so glad to have read this - puts my mind more at ease to know have a cause for that.

I have tried other remedies - but the cortisone shot has been the only thing to actually work. Any other ideas?

I was on Lisiniprol for 91 days as an ACE inhibitor for diabetes and kidney protection. All was find except for a constant feeling of burning blood all the time. It was tolerable though.

But on day 91 I developed hives. 14 days after that I was broken out from scalp to sole of my feet -- feeling miserable and no relief in site.

Dr. told me that I was allergic to something and to take benadryl. 3 doctors later I was told that I had hives and had to learn to live with it. He increased my benadryl.

I took myself off all my meds except insulin -- not knowing what was going on. I researched and discovered the this drug should NOT have been given to me because I also have SJOGRENS (an autoimmune disease akin to Lupus).

The hives got worse, my benadryl was increased by the drs. Finally I passed out due to benadryl toxicisity (overdosed) and they put me on prednisone.

To this day -- 6 months later -- I still have hive outbreaks that are miserable. I have missed a day from work every 7-10 days. The prednisone helps, but as a diabetic it sends y blood sugars through the roof. My rheumo has put me on doxepin (an antidepressant) because it has an antihystamine property that seems to be helping.

It is also useful for the rheumotoid arthritis that comes from Sjogrens and such. I am sleepy a lot -- but that could be from the doxepin.

I will never take Lisiniprol or any other ACE inhibitor. I am suffering and the worse part of it: the doctors and medical profession don't care and simply tell me to learn to live with it.