Lupus symptoms and conditions

Hey Guys,
I'm new to all this but just wanted to share my story with everyone so I feel like i'm not so alone! I'm 23 and was diagnosed with SLE 3 years ago.
It started in my joints and then moved to my kidney's real fast. I now have stage 4 nephritis, finished 6months of cyclophosphamide in Feb and have been on no less than 40-20mg of pred for about 2years. Just when things were starting to look better it has stared in my blood so they are trying to up my dose again. It has thinned my bones so I am on special meds for that now too.
I know taking the pred is something I need to do to live but it comes at a really high price. I don't even look like the same person I used too because of the moon face. I know it's shallow but at 23 it is almost as bad as having to live with this disease. I now have really low self esteem and get anxious all the time, which is affecting my job. As much as I want to come off I also worry that I would have to stop work again as the pred is what keeps me going. All I want to do is get off it though! Anyone know any alternatives? Also, just wondering if you guys are still drinking alcohol while taking pred?
Thanks for listening guys!

Just had to comment on these side effects I'm reading about Lipitor and other Statin drugs. I don't take anything and I never will after finding this site. Guess what, I have had high cholesterol since I was in my early 20's. When I say high... it ranged from 240 - 260...remember when 250 was OK? Well folks, it's 30 years later, my cholesterol is just about the same range, and Oh My GOD...I'm still here without any drugs.!!! They lowered the range so they could pass out the pills!!! Greed, greed, greed. Do you wonder why our Healthcare system is out of control? Well, when you keep feeding people medications that are presenting the side effects they do, making them sicker, they just keep testing and testing and testing for other things. Let's do blood work, MRI's, CAT Scans, Spect Scans, Pet Scans...Scan away...and guess what...all comes back OK...hmmmm why not look at the drugs you're prescribing. We need to see "all the side effects" listed. Not just some. They're misdiagnosing, Alzheimers, Fibromyalgia, MS, Lupus, Dementia, Arthritis, and on and on when it's been the drugs causing the diseases!
Ween off everything and anything you can...take your chances...when God wants you, he's going to come and get you no matter what you're doing...right or wrong!

i went 2 the specialist yesterday that put me on the prednisone due 2 me having crohns as the joint pain in my ankle has been so painful and his now told me that the prednisone has giving me arthritis im really upset about it im 25 and im in a lot of pain the specialist said 2 go home and rest my ankle for the weekend its been 2days and its still not better iv got 2 go back and see him on Monday and if it hasn't improved which i doubt it will his going 2 change my medication he wanted 2 up the dosage of prednisone to 30mg as im down to 10mgs now and i told him that i have received every side effect possible 2 the prednisone and its just starting to reverse and there is no way im going to le you put me on a higher dosage i want 2 come off this drug as quick as possible and he surgesseted another medication that will help with the arthritis in my ankle but it will make me nausea i told him id rather that then all the symptoms iv been having in the last month then be put back on the prednisone

All i can say is WOW! i am so happy i found this website..
I too have suffered side effects and till this day am suffering from Levaquin.
In Feb of 08 i was diagnosed with Prostatitis and was given a 14 day dose of Levaquin. Hours after the first dose i started experiencing pain in my lower extremities,me thinking it was caused by the prostatitis i continued the doses.By the second dose i was in absolute pain in basically all my insides and started having this metal taste in my mouth.Not ever being allergic to any type of medicine i continued the doses only getting sicker and worse.By like the 6th pill i was having anxiety,insomnia,hallucinations,nightmares whenever i was able to close my eyes,partial psychosis,rashes on my face that would get bright red then go away and the skin would peel off.I would be so thirsty water couldn't quench it,suicidal thoughts.I developed a pain in my left calf and behind my left arm in the tricep that till this day bother me.Joint pain,ringing in my ears,excruciating headaches like someone was jabbing a knife in my head,lost 30lbs cause of the colitis it caused,neuropathy,and so much more,it was a total nightmare.
I went in for discomfort of my prostate and doctors couldn't understand why all the other symptoms only a week later,they were completely clueless and told me i was making this stuff up cause i was having an anxiety attack.. I was a perfectly healthy 33yr old before levaquin. The doctors sent me for test after test from HIV to LUPUS only to tell me its all in my head,that i was a healthy man to move on with my life.I would try to sleep and have all these terrible thoughts and would swear i slept for 3 hrs only to see that 20 minutes have gone by,i was gentle to the touch.My family had no clue,they thought i was going nuts.I was pretty bad for months after,the effects started going away little by little,i was back 50% to myself by like June of 08.Since,i still have the pain in my left calf from time to time,tremors,joint pain..I have since joined the gym and have been taking supplements that have helped a lot with my joint pains.
This stuff is poison and should be taken off the market..

I have been on Yasmin for over 5 years, and just thought that I was a hypochondriac. After starting Yasmin I experienced severe nausea and unrelieved hunger pains. I saw a gastroenterologist who performed an EGD and Colonoscopy at the age of 20. It was normal and I was placed on Protonix to help with the GI issues. Also I have severe joint pains in my knees, hips, elbows and shoulders. I have been tested for everything from Lupus to Rheumatoid Arthritis, and it was all negative. I get headaches, have little sex drive if any, my skin is not clearer than usual and nor has it been since starting Yasmin. Thanks to all those people who have voiced their concerns and shared their stories, it makes us feel less crazy. I threw out all my birth control pills last night and I am going to try another form of contraceptive. I mean my headaches and chest pains have gotten so bad that they have forced me to go to the ER on several occasions. I DO NOT THINK THE BENEFITS OF YASMIN OUTWEIGH THE RISKS ASSOCIATED.

iv been diagnosed with crohns 2months ago iv now been on prednisone for 4weeks i started on 40mg and now down 2 15 the last week my ankles have swelled up and now my right ankle is so painful to touch and walk on, and nothing is making it better, pain killers don't work, massaging it doesn't work, putting deep heat on it so to night i iced it for 15 mins and put a heat pack on it several times the pain went away for 10mins and came back its so painful im almost in tears, im down 2 15mg now so im not eating as muchas i was b4 i wasn't getting full i just keeped eating, my mood swings arnt as bad iv got moon face as they call it and i hate it as theirs no shape at all 2 my face, im getting pimples as will iv retained all this fluid and i feel like a marshmallow can someone please tell me that this pain will go away or is their something i can take 2 make it go away this is the worst medication in the whole world when i get off the prednisone and i have another flar up id rather have the runs and stomach cramps then all this drama iv been having in the last 3weeks iv also changes my whole diet and its made a huge difference 2 how i feel

I have been taking prednisone for three years and I love it! It has helped me out with breathing problems and arthritis pain. I take a small does every day. And when I am without it I have trouble breathing and have painful arthritis pain. This drug has done wonders for me.

Hello,
How long do side effects last after completing steroid treatment? I've been off of pred for 4 months for crohn's first time. I was on 40/30/20/10 for a 6 week period. When I got to 30 my legs went into extreme pain. They felt like they were on fire, burning knees. Went to several doctors. One said steroid withdrawal, one said inflammation of nerves from Crohn's. Neurologist put me on neurontin to get off of the pain meds. I am still in excruciating pain and wondering if it really is steroid withdrawal. I can barely walk at times with extreme sharp pains, like someone is stabbing me in the legs. Can't stand for long periods of time and pain pills barely touch the pain. During steroid treatment, they gave me 3 rounds of Dilaudid in the ER and I was still crying, and I don't cry. Has anybody ever had this effect this long after being off the drug??

I never thought I would ever be posting my experience with BC but I think this could be useful to other women worldwide. I have been using Yasmin now for a year and a half and I agree with everyone here at the beginning I felt great, beautiful skin, controlled short term periods, stable weight. My body changed in all the right places. My breast turned a cup larger (I was a 34B) my buttocks got larger and rounder. My boyfriend was enjoying the changes as much as I was!! I thought this was the perfect pill for me and I actually recommend it to all my friends. Things started changing for me about three months ago. I started to feel tired, I use to work out 5 times a week now I can't even work out one. My eyesight started to change, I started getting cramps in my legs at night, my legs started feeling heavy as if I was losing circulation, fast heartbeat, and the occasional migraine to top it all of. Then I found the commercial about the lawsuit on TV and I panicked!! I googled the lawsuit and I found this websi

te and after reading everything here I went straight to my Dr. this afternoon with all my side effects. I am 39 now 18 on diferent types of BC and up until now I have been a very healthy and active person. When I read everything here I was decided to get off thie pill inmediately. But here goes what my Dr. said: (I trust his opinons because he is a friend and has been my obgyn for the last 15 years) " first Yasmin is the best hormone BC on the market, very women has different side effects and giving me another pill wouldn't solve my problem. I could actually get worse. He gave my the option of going of the pills but asked me if I was ready for all the changes that would bring. Weight gain, acne, anxiety, depression etc. Another option he suggested I try was taking an antioxidant complex, omega 3, and lecithin. All natural supplements which he firmly believes will make me feel much better, help my circulation, and minimize the side effects. I will start this treatment tomorrow and stay on the Yazmin for at least another month. PS. My health is in perfect conditions after blood tests and sonograms. thank God!! I will keep everyone posted on my progress. And I hope this is useful to all you ladies. God bless!

Reading these is both disturbing and a relief. I was put on YASMIN by my GYN after blood work confirmed my estrogen was low- I was 42 at the time and the GYN felt I needed the pill to boost my energy and she said it would "even out" mood swings. I stayed on the pill for 3 years.

I attributed my fatigue to being "perimenaupasal" meanwhile I stopped the pill 3 weeks ago and my fatigue has lifted, my aches and pains are gone. When I would try to research these symptoms I would come up with Lupus or some chronic fatigue issue, but I realize now it was this pill making me fatigued, moody, and thirsty!!

I have had blood work done to rule out any other type of illness or issue and realize so many other women are struggling with these symptoms, the pill that is supposed to make life better is making people sick.

This website is a joke! After I had my Mirena inserted 4 months ago I started reading on the internet about possible side effects. I was furious with myself that I hadn't Read up on this before the appointment. There were so many horrible reviews involving hair loss, weight gain, acne, and mood swings! I was so scared and actually thought about removing the Mirena that week. I then found multiple reviews on websites not owned and operated by other drug companies that are trying to scare people in order to prevent the sale and use of the Mirena and the side effects listed here were a 180 degree difference. I have not experienced any weight gain, in fact, I recently was able to shed 5 pounds from picking up running again (so it is possible to LOSE weight on the Mirena as well). I have had zero hair loss, have not had a pimple anywhere or any random hair growth. My live in boyfriend and I have discussed if we've noticed any mood swings or changes and my mood which is usually optimistic and positive has been the same since I had the Mirena inserted. My periods are much lighter and although they can last an extra day or two more than what I was used to, they are light and I have not had any cramping. I'm writing this review not because I absolutely love the Mirena, I think it's a fine form of BC but who LOVES their BC, isn't it all kind of a pain. The Mirena is by far the most convenient form of birth control and I don't worry at all about missing a day and the chance of getting pregnant. I'm writing this review because I encourage everyone to talk more with their doctors about the side effects and look around on the internet for REAL websites.

I'm a 35 yr old stay-at-home mom of two who was diagnosed with mixed connective tissue disorder over three yrs ago. But since I was 18, I've had scleroderma & rheumatoid arthritis when I was 23. I never took any drugs for either one up until May 2008. Although the worst things I've gone thru over the yrs were weight loss, stiffness and limited flexibility. The most dramatic change was my facial features. I've had old friends from high school ask me if I had plastic surgery! Other than that, I was able to get pregnant twice and have two beautiful boys. When my rheumatologist diagnosed me with MCTD in 2006, two yrs after my first child, it was very upsetting to know that lupus and sjogren's syndrome was added to the mix, literally. She wanted me to take prednisone and plaquenil. I said no way. I told her I wanted to try for another child and didn't want any drugs to ruin my chances. She assured me that I could take both even while I breastfeed! So I left and ended up with my second boy in 2007. But admittedly, both pregnancies took a toll on my body, the first one with MCTD and then the second one, I had gestional diabetes. A few months after birth, I felt the arthritic flares and the fatigue and sluggishness coming on strong. Without doing any research about either drug, I did consider taking it after I stopped nursing my second child and thought okay, two children are it for me and now it's time to take care of me. I was given prednisone at 5mg daily May 2008 for that entire month. I was very scared but I did it. I just didn't do it consistently. I would skip a day or two..or three...or four days at times before I would take it again. The rheumatologist didn't give me any warnings about side effects, skipping the dosage or tapering off. After I ran out, I decided I couldn't go back on anymore. It did ease the stiffness in my joints and gave me more energy but the mood swings, faster heartbeat and more than normal anxiety did not help. In the next two months, I experienced serious cases of heartburn and acid reflux and a series of episodes when I would gag on a bite of food and had to jump a few times to get it down. I felt a rush of such fear every time it happened that I knew it was the absolute worse feeling I ever experienced in my life. Then the worst happened last August when I fell asleep one one night after having a chocolate chip cookie. I woke up and couldn't swallow. I started drinking water but it was coming back up and out of my mouth. I panicked and screamed for my husband to do the Heimlich on me but it wasn't working. We called 911 and I started downing another glass of water. By the time they got there, I felt the cookie go down. It was something I never wanted to go through ever again. I saw a holistic chiropractor who specialized in kinesiology and other little rituals. He discovered a problem with my adrenal glands and digestive system. Soon after, I saw a gastroenterologist, had an endoscopy and Barium swallow and the diagnosis was esophagitis. It significanty showed how thin it was getting and why I had trouble swallowing. As of last November I was scheduled to have a three hour endoscopy to have a tube go down my esophagus to widen it enough to be able to swallow again. I was too scared and so it didn't happen to this day. You see I like to go the natural route but it is an expensive one at that. It really is my gut instinct that tells me that drugs like prednisone are killing more people than helping people live. But I look back to the fact that I still didn't know anything about it, not like I do now, thanks to the internet and websites like this. Then here's an absolute doozy for you! I was fine for a few months, up until a few months ago in February. My knees were in pain and stiff as a board, my arms were not happy as well. I couldn't take it anymore so I actually went back to my very first rheumatologist in March, who I saw when I was 25 yrs old. He did x-rays and then pushed for the prednisone. I broke down and decided to take it again. This time at 10mg a day. Now I know this is nothing and so was the 5mg from last yr but being only 102 lbs at the time, my body was telling me that it couldn't handle it anymore. I took it consistently this time and for almost two months. The last two weeks though I started to skip again. I also decided that the RA was too old school for me so I went to see yet another RA at the end of April, the one who diagnosed me w/MCTD three yrs ago. I figured the first one never changed so maybe she got better this time around. She took me by surprise when I told her I was taking pred and that she wants me to stop!! She specifically said, "it's an immunosuppressant, that wouldn't work for you."! What a joke!! So she just said to finish it off and start on plaquenil, another drug I dreaded to take. Again, no explanations about side effects or tapering off, I had like three pills left and just stopped. As for the plaq, talk about short-lived. I took maybe three or four and that was it too! I was angry by all the RAs and how they operate. Just take this and don't worry about nothing else. I'll see you in a few months. Then you go home and forget about it. It is highly unlikely with what came next for lil ol me. The first week of May, a pain started in my right ankle. It was more like an annoying sore pain so I tolerated it. By the end of May, I was hobbling on a cane and watched my foot go from normal every morning to an inverted position, w/ the sole facing my left foot. It was swollen, painful and I couldn't put any weight on it. After thinking I was going through an arthritic flare, I said to myself that this was no ordinary flare I've had in the past. I thought of prednisone and how it started after I stopped taking it. The plaq was not in the picture since it takes months for it to take effect. THAT'S WHEN I FINALLY SAT MY ASS DOWN AND STARTED SURFING. After a good three sleepless nights of reading pages and pages of info about withdrawal symptoms, tapering off and stories much like the ones I've read here, I flipped out and went on a mental rampage. I put two and two together about the link between my esophagus and stopping the pred last yr. I have no doubt that the pred f'd it up! Now after seeing one orthopedist (who didn't deal w/the foot/ankle but didn't know), having an MRI which showed torn tendons and ligaments and then being sent to a podiatrist surgeon (BIGGEST MISTAKE TURNED INTO A BLESSING), who decided to take the conservative approach by having my foot casted in a straight position. It was a procedure that I had to be knocked out for since I couldn't bear the pain of anyone moving my foot. That was June going into July. Removal day was the 23rd and lo and behold, hello inverted foot again. Not only did the cast feel loose but I felt my foot turning in it! The blessing was that I didn't have surgery and I didn't have it w/ this damn doctor! He then felt I needed to see a neurologist to rule out whether I may have lesions elsewhere in my body that could be the cause of my foot inversion. I said sure I will see one but I'm not coming back to you! I went to see the doctor I was supposed to see in the first place, an ortho surgeon who specializes in the foot & ankle. But boy he threw me for a loop! Not only did he roll his eyes at the idea that prednisone was involved in this injury, but that MRI don't tell the truth and so I don't have anything torn!! Based on my autoimmune history, he wants me to see a rheumatologist to rule out arthritis as the culprit. He also thinks seeing a neurologist will be a waste of time. He also mentioned the possibility having RSD/CRPS. Google it, it's not GOOD! I honestly hope that's not the case since I'm not in any pain other than the stiffness and non weight bearing pain I'm already used to. This ortho is supposed to be one of the best in the nation and I don't know if I can trust him either! All I know is the prednisone should be BANNED. BLACK BOX THIS BITCH!!! If I had the power and money to go after the makers of this drug, I would run them down for every dollar. I have my 22 month old who was just diagnosed w/PDD recently and I get angry w/the memory of that RA trying to get me to take the pred and plaq before I got pregnant again! My almost five yr old is wondering why I have to walk around in crutches every day and that I can't go outside to play with them anymore. It's been almost three months of this ordeal and it's starting to really depress me, my husband is trying his best to take care of me and the boys as well as my mother and mother-in-law. I have a great support system but I still long for leisurely walks by myself and taking the boys out on my own. I can only go outside in a wheelchair after my husband carries me down three flights of stairs in a no elevator apt. bldg. Life has changed drastically! I'm trying to stay sane everyday for my boys' sake and for my husband's. I do want to mention one last and most IMPORTANT THING. A website: ****** I started taking it two months ago and it has helped me tremendously so far, regardless of my situation. I developed an enlarged thyroid nodule back in February which needed a sono guided biopsy to see if it was cancerous and it turned out to be benign with normal thyroid function as of last month. As for my foot, I don't know what I may have if it's not arthritis related but I hope that LDN is working on it as of right now. For all autoimmune disorders and some cancers, anyone here should take a look at the website and read more about it. Thank you for letting me share my story :-).

I had my Mirena put in in 10/08. It was such a painful process, I was screaming and crying on the table and the Dr. asked me if I wanted her to stop?! I said no just finish the process. I cried the whole way home. I have had cramps and spotting EVERYDAY since then. I have gained 15 lbs. I have never gained weight in my life except being pregnant. I have also been extremely tired, I feel very withdrawn. I do not feel like the same person I used to be. I am getting my Mirena out today and will post again when I notice a change. I am pretty sure there will be one!

Was diagnosed with Lupus in 2003 and told by my Rheumatologist to get the Paraguard IUD for birth control. He said anything with hormones is off limits. So, I go to my OBGYN to get the copper iud and go on with my Lupus Life for 6 years which included severe joint pain in my fingers and shoulders, sun sensitivity, constant fevers of 105 degrees and infections that resulted in hospital stays and hair loss so bad that I had to wear wigs for 2 years, greenish discharge from my nipple, depression, severe fatigue and rashes. Well, I figured that if the Mirena was causing these same symptoms in women that maybe the Paraguard was too; so I made an appt to have it removed. Well, when my Gyno pulled it out, he freaked out because to EVERYONES SURPRISE, I WAS MISTAKENLY GIVEN THE MIRENA BACK IN 2003!!!!!!!!! SO, YES, WITHOUT A DOUBT, THE MIRENA ABSOLUTELY CAUSES SEVERE PROBLEMS BECAUSE IT'S BEEN OUT OF ME FOR OVER 6 MONTHS AND I FEEL PERFECT NOW!!!! My doctor's don't even think I have or ever had Lupus in the first place. They will retest me next month but they think I was diagnosed with Lupus too soon (after only one visit) then going right away to my quack Gyno and getting the Mirena instead of the Paraguard was what was causing all the problems. Will see soon what the bloodwork says but that Gyno who put the wrong device in me is going to pay for wrecking my life for the past 6 years!! My medical records even say he was supposed to insert the Paraguard. This experience has caused me to have zero trust in people because no one does their job right anymore. I could go on and on. . . Will take personal contacts if anyone wants to chat or vent about the poison that's inside of them. But, be ready for my response, GET IT TAKEN OUT NOW IF YOU HAVE ANY SYMPTOMS. Remember back in the 80's when women were getting silicone breast implants and getting Lupus? It's the same thing with the Mirena, our bodies are rejecting it! Good luck and God Bless you all ~ Teecee007

My name is Katie, I am 31 years old. I have been suffering with what doctors call Chronic Idiopathic urticaria for 16 years now. I was prescribed Zyrtec 14 years ago and remained hive free until I had my first son. After a complicated pregnancy and emergency delivery the hives returned full force. The doctor prescribed Singulair in addition to the Zyrtec.

The hives went away; however, I have so many other problems now. I have been seeing a specialist thinking I have lupus or some other disorder, but all my tests are normal. It wasn't until I had my singulair refilled yesterday that I realized instead of symptoms, what I am experiencing may be side effects.

-- I have gained 60 lbs.
-- I have horrible headaches almost daily
-- I am so tired that when I am not working it is impossible to even make myself leave the house
-- I have taken myself to the hospital 3 times thinking I was having a heart attack and told I suffer from acid reflux
-- I have so much pain in my legs/feet/back that I can hardly walk
-- My hands and feet like to go numb for no apparent reason
-- I am always anxious & moody.
-- Can't sleep
-- Clearly I am not myself. Lately, I have felt the quality of life I am leading is horrible.

Wouldn't it be something that I have spent all this time & money trying to figure out what else is wrong with me when it is the medicine I thought was keeping me well really making me sick. Why do the finest doctors not realize when your symptoms are actually side effects?

I am pretty out raged at this point. I would take myself off this medication today if only I knew how to control the edema.

Hi, my name is Eva and I am 27 years old.
I am a mother of 2 and had Mirena IUD inserted a few months after my 2nd daughter was born. This was 3 1/2 years ago.
Since then I have developed Eczema on my hands (which is the least of my concerns). More importantly I was diagnosed with Graves' Disease (hyperactive thyroid function) last year.
I had developed a goiter on my neck (enlarged Thyroid) , my hair was very brittle & my eyes were always dry and itchy.
Since then I have undergone Radioactive iodine treatment to destroy my thyroid. Reading all of your posts seriously made me angry and I teared up because I definitely think that there is a link between Mirena and thyroid problems. It makes sense that your body would try and fight off any foreign object in your body and maybe that send the thyroid into a out of whack mode ?
I am currently researching if there are any clinical studies out there on this possible connection. If anyone would like to join me - pls. contact me at ******
I have an appointment to have my Mirena removed in a few days, I sincerely hope that it will make a difference in my health.
Best regards,
E.

I was on levaquin august 2008 for a sinus infection. After about day 5 is was in pain. My joints ached terribly. My knees, my hips, my wrists, elbows and fingers. I have undifferentiated connective tissue disease with lupus like symptoms. I thought that maybe the levaquin made me flare. I stopped taking it on day 5 and after a week felt somewhat better. I am on meds for joint pain for my autoimmune condition but still had the joint pain with the levaquin. The physicians assistant that I saw said joint pain wasn't common. From what I'm reading here it's very common.

On May 8th 2009 I had my gallbladder removed. I have lupus, sjogrens disease, pulmonary hypertension, diabetes type II and coeliac disease. I was prescribed doxycycline as an antibiotic for post op infection. Within 2 days I was very ill - thought I was going to have a heart attack. The pain over my heart was alarming. Also, I found it very difficult to breath. I did some reading and found out that Lupus patients should not be given doxycycline. (The hospital and specialists knew my medical history and it should have been an easy thing to check for contraindications of medications - I had never had doxycycline before)A day after I stopped the antibiotic things improved dramatically. At the post op visit to the specialist, I was told that this was 'all in my head' and it was a lot of nonsense. However, I stuck to my story and finally the specialist conceded that even the best doctors do not know everything!!!!???
One really has to be VERY careful to look after one's own health.

I too am on warfarin for life. I was diagnoised with lupus anti coagulant after they found a clot in my right leg. I was having no symptoms in my leg ,went to the er for hurting in my chest and left arm. was started on lovenox shots 2 times a day and coumadin. I too am experiencing joint and muscle aches and dizziness and feel extremely tired all the time. But I thank God every day they found my clot before it moved. And that they found the clotting disorder. I hope you all get better soon .. God bless you all. P.S. This medicine scares me very much, But so does the alternative!!!!!

I am a 25 y/o mother of 5 boys, and my youngest is 8 months old now, and I had mirena inserted in Jan. 2009. I also I have lupus, so my hair falls out when I am pregnant or breastfeeding, but I delivered in Nov. 2008, and stopped breastfeeding in May 2009, and since I quit breastfeeding, my hair falling out has only gotten worse. The first 4 months that it was in, I had a heavy non-stop period. Now I get a 7-8 day period twice a month. In between my lengthy periods, I have a discharge that smells really weird. My partner tries to be understanding, but it's difficult for him I know. He says I have permanent PMS, and that I'm pushing him away. My mood swings from happy to sad to out right angry at the drop of a dime. It's kinda scary really, especially since I work around people and can't afford to have a break down out of nowhere. My partner also said he can feel the threads from the mirena sticking him when we have sex, and that it hurts him. On top of that, whenever we have sex, I always start bleeding for a couple of days (2-3) w/ real bad cramping. I have also had weight loss instead of gain, I get body chills, nausea, irritability, and the list could go on forever. I also had a bad experience w/ the depo shot, and I'm not good w/ pills, so I am looking for another form of birth control that isn't permanent because we would still like to try for a girl one day, just not now .... HELP ME!

After reading these posts I am more confused than before, because my experience is so far very different. I was diagnosed with DVT about two weeks ago and now take Coumadin daily; the Lovenox injections have been discontinued. The reason I'm so confused is I now feel the best I have in 5 (five) years.

Before being placed on the anti-coagulants I had memory and concentration issues that were progressively getting worse and greatly affecting my job, and had daily headaches. I had joint pain that made it difficult to get up after sitting for awhile; they felt constantly inflamed. I felt fatigued all the time and my muscles hurt like I had really pushed them; I just didn't have any strength, and had muscle cramps. I was constantly yawning and found my jaws hurt from clinching my teeth, subconsciously trying not to yawn. I was extremely sensitive to physical touch, even hugs hurt. I also felt extremely depressed and cried almost daily. My lips and left cheek tingled, as well as other parts of my body. Plus I would get the feeling of sudden pressure in my head (different from a headache) like it was going to pop off, and I my eyes didn't seem to track what I looking at and had difficulty in remembering or comprehending what I just read.

About 6 (six) days after starting treatment it completely changed and these symptoms are essentially gone. I have talked with my doctor and pharmacist and they are baffled. I am concerned this change, while welcomed, may indicate an underlying condition that is not yet diagnosed. Has anyone ever heard of such an impact from starting Coumadin treatment?

Hi,

I'm fit, tough and extremely healthy. Tried Mirena. Ok for one year then within six months I experienced increasing upper abdominal pain and ultimately the sensation of something bursting central chest and the first of three Emergency Hospital admissions. Bloods clear. Xrays clear. ECG's clear. Endoscope clear (had experienced severe and sudden onset gastroenteritus/IBS acid reflux, extreme food intolerance.) Also had a large cyst needed draining (and multiple smaller) appeared in left breast. Lymph glands in neck up. High histamine, raised albumin, white blood cells relating to allergy/parasite. Allergic reaction/systemic rejection of coil?
No uterus pain at all.(Not had period for over a year)
So very ill after sixteen weeks being consistently told it wouldn't be the coil I took it out. Hard to describe but an extreme sense of relief, reduction in pain from entire GI tract swelling/sensitivity.
QUESTION.
One week on huge improvement but I still have continual upper body/chest pain (diaphragm?), and additional pain sharp pain through left ribs to shoulder blade, worse with sudden movement. Anyone had residual/slow to improve nerve damage? Need to be fit for my job.

Thank you for reading.

PS. Its not a 'coil'. Its a nasty sharp edged piece of plastic.

I had the Mirena put in almost a year ago now .. At the time my doctor whom I trust very much .. and myself felt it was the best thing for me at the time because I was having on and off times of very heavy bleeding that wouldn't want to stop .. so to try and reverse that we went with trying putting this in .. It was a little difficult getting it put in ..but nothing all that bad .. as Im reading this site .. I have called my doctor and asked for her to call me ... Because .. I have recently had blood work done .. I have lupus so its taken often anyway in June my liver readings where high in the 70's so we waited one month and had them rechecked .. I was just told on fri I need to have a ultra sound done on my liver because in one month them readings went from the 70's to now being 125/135 and no one seems to know whats causing it .. soo i am grasping and looking into anything I can think that could cause it .. now im wondering if I didn't go from one problem right into another by getting this .. I hope im wrong and I hope for all of you having problems you feel better and get on the right track soon ..
God Bless .. V.

I had this thing placed in April of 2008. I was fine had minor cramping and went back for check up. everything was okay until January 2009 I got a yeast infection. I did an otc med and it went away for about 3 days. It came back with Avengeance not only did I have a yeast infection but it was accompanied with migrated arthralgia. I could hardly walk at one point on my right foot then it moved from my right hand to my left and has settled in to my right foot. I called my PCP and she gave me meds to treat and it went away for a month. I was told that if it came back with the arthralgia she was going to test me for lupus!!!! LUPUS I thought I was in a lot of trouble the next month because it came back. I have had 8 yeast infections in 6 months. Every time my husband and I have sex it feels like a rug burn and I get the infection back. I was told (when I finally thought to call) by my GYN that if you get yeast infection and it doesn't fully go away it can live on the strings and keep coming back. I was treated this last time with a vag cream insert and an oral med. I thought I was free and clear but two months later here I am again. I am going in to see my GYN/PCP to have this removed tomorrow she agrees that the mirena is the issue. I have had all these other symptoms thought mostly the weight issue I can't lose weight not matter how hard I work at it. I have facial swelling and have been very fatigued. Also be warned that you should not have this placed if you have history of endometriosis. I consulted as to why with one of the doc that i am a nurse for and she said that this can cause bleeding to be worse since endometrial tissue can attach anywhere in the body. I have endometriosis removed twice and I am not willing to take the risk of abn bleeding elsewhere I already have enough CRAP to deal with. I am sure that some women have had this and it hasn't been an issue. More power to you!! but for those of you who are suffering form this. You can file a formal complaint with the FDA I think if enough of us file complaints maybe will step back and take a closer look at the TRUE SE of this horrible device!!

I had the Mirena inserted almost 2 years ago. Over the past 6 months, I have had horrible joint pain and swelling in my ankles, knees and hands. I have not been able to wear a wedding ring in 4 months. I hurt so bad that I can't sleep and recently I have felt that my fingers, toes and palms of my hands are cramping. My calves get so swollen, they shine and no one knows why. I have had MRI's, X-rays, innumerable blood tests, nerve conductions and a bone scan. Other than the bone scan showing inflammation, EVERY test is normal.
Because of these increasingly debilitating symptoms, I started wondering if they were related to the Mirena. That is how I found this website.
I had the Mirena removed yesterday and I think I may see some decrease in swelling today. Even though I still hurt, I am not cramped.
I see that many people experience swollen joints, has any one had their fingers swell. My swelling never goes down, I have it 24/7. If so, can anyone share there experience after having the Mirena removed. Did your joint pain and swelling go away?