Blood disorder symptoms and conditions

My daughter-in-law had the Mirena inserted November 2008, when my grandson was about 7 weeks old. Our lives have been hell since, after months of headaches,nausea, fatigue,and just always pale, weak and lethargic. Many trips to Doctor's and hospitals, never any answers. March 12th 2009 blood test showed kidney failure, low hemoglobin requiring transfusions, and platelets so low they had to do plasma exchange every day for almost a month. Our answer TTP, this is a very rare blood disorder- in this case caused by the mirena IUD. 32 days in the hospital, after the Mirena was finally removed on day 26 her counts returned to normal ..with tons of lasting effects she came home, she lost her kidneys from damage that went on to long for her body to take, she is 20 and will never have another child, and continues to have lasting heart problems, as well as needing a kidney transplant. Please know that those of you who have it who have never had a child, that's not supposed to happen, its only recommended for women who have had a child. The list of side effects and who should and who shouldn't have it is not getting to the patient. Here is a link to a petition I found and continue to forward and post everywhere I can. Please keep this going so we can get the FDA to take this poison off the market.

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Hi,
I have been on Warfarin since 2002. I suffered multiple pulmonary embolism's in both lungs. My first was in May 2002 and even though I had excruciating pain in my left shoulder area & could not lay down as this worsened the pain, the NHS x-rayed my torso!!!! & sent me home with medication for a kidney infection. I gave it a few weeks but the pain did not go completely & was moving to my right side, I was coughing up 'tablespoon' size clots of blood. My GP was not happy & spoke to a colleague at the hospital. I was sent straight in,(July) thorough tests done & I was found to have suffered multiple PE's.
I tried to sue them for medical negligence but it was turned away by the court as there was not enough evidence on my notes ie; some info was not written down & most was unreadable to even other medical professionals.
Since Aug 2002 I have been on Warfarin & am on this for life.
A blood test showed that I had a genetic blood disorder called 'Factor V (5) Leiden heterozygote'. This causes my blood to form clots much easier & quicker than the average person. If you have this disorder, as a woman it is important that each time you have a child you are treated with Heperin after each birth. I had 5 children & was not treated therefore I suffered with my PE's.My children have been tested for this & 3 of them have it. My daughter was glad she found out before having children as she hasn't had to suffer what I went through.
I ask one thing.... Please TELL your GP that you want a test for the above disorder. As I suffered my PE's & that I have this blood disorder I have to stay on Warfarin for life.
If you need any more info I will tell you as much as I know. Feel free to ask questions. my email is; ******

I am 28 and just suffered a pulmonary embolism (P.E.), very unusual for someone my age. I went into the hospital three times before they found it. I had severe pain in my upper left back, shoulder blade and neck when I first went in and the doc told me I was just having muscle spasms...I played Division I basketball for 4 years and am now a coach...I told him it wasn't a muscle spasm, but he sent me home with Ibuprofin....The second time I went in, I had worse pain two days later and told him it wasn't going away that something was really wrong. They did lung ex-rays, MRI and didn't find anything. They did no ultrasound or CT...hmmm. The third time I went in, I had terrible pain in my right side as though someone was stabbing me in the side. Couldn't catch my breath and was in absolute agony.
Finally they did a CT and ultrasound and found it at 6:30am on a Monday evening. I am very lucky that the third time I was admitted into the ER after a week, that they did a CT that found the P.E. I very easily could have died.

I was on Yasmin birth control for a year, unusual for a clot to occur after taking birth control for that amount of time, so they are not sure if that caused it and are still uncertain of the cause for my P.E. Maybe a blood disorder that I have not yet been tested for.

At the beginning of my warfarin treatment, I didn't experience headaches. Now though, after about 3-4 weeks...I am experiencing headaches in the middle of my forehead that are driving me crazy. I'm wondering if it is stress from all that I have gone through...an extremely painful experience...or a side effect of the drug.

Also, pain in my legs have been a problem. They feel heavy, like carrying around lead and I don't feel like I have much energy. I don't have much of an appetite anymore either. I have always been extremely active, stay at a healthy weight and have wanted to eat meals! Not so much anymore.

I'm not a smoker, and eat healthy foods...This is all very uncharacteristic for me and I'm extremely frustrated. I understand that it will take a while for me to recover from all of this, and inpatience with the matter could be a problem causing stress.

If you have any feedback, please let me know.

Does anyone know if anyone has experienced an itchy head (scalp and forehead) with small pimples or something like that? Terribly itchy, and started after starting Advair, but have no way of knowing if related. Does anyone know?

Bill

I had taken reclipsen for 6 months, and whenever it was time for me to stop taking them so my period would come on...I would bleed forever. Thus far, I have bled for 4 weeks straight. That is not normal at all

I decided to get Mirena after the birth of my second son. I seemed like such a great idea. I had it put in last Sept. My doctor is very good and warned me about some things that might happen after it was inserted. What I didn't expect was just how bad I bled after getting it. I know it sounds like I'm exaggerating, but there was a point where I was running to the bathroom every 15 minutes to change. It was horrible, but my doctor assured me that everything was normal and I should see some improvement within the next few months. Including the heavy bleading, I bled for about a month and a half straight. About a month of that was the annoying spotting. Since then, I haven't had a period, which I love...the only thing I love about it. The past year has been rough, but I never associated it with Mirena until now. I was starting to lose my baby weight but now I weigh about 5 lbs more than I did just after giving birth. My stomach looks bigger than my sister's and she's almost 7 months pregnant. I was put on anti depressants, but associated that with post partum depression...now I'm not sure what caused it. My husband and I have been fighting more and we even considered spitting up. I'm just not ME and he has even said it. I have acne like a teenager, weight gain (no matter what I do), very low sex drive, BLOATING, cramps, my memory is pretty much non existent, nausea, horrible sleep pattern which causes extreme tiredness all the time, sore body, constant discharge, and blurred vision. I've actually taken pregnancy tests because I felt worse than when I was pregnant. I've talked to my husband about the Mirena and wanting to get it out, but he's just worried that I'll get pregnant again if I get it out. He doesn't realize how bad I really feel cuz I'm not telling him. We decided that our marriage is worth saving so I'm trying to do my part by not getting mad at him for every little thing and not complaining about how awful I feel. He just started a new job, too, so insurance hasn't started at the new place and his old place of employment has already stopped it through them. I can't pay for a regular doctor's visit without insurance, so I guess I'm stuck with it for now. Sorry for babbling, I just don't have anyone to talk to, so once I start, I just keep going.

I am writing regarding my mum. She is 73 years old. She attends hospital for a blood disorder and high blood pressure. She already takes Praxilene for blood disorder and Co-Amilozide for blood pressure. When attending hospital last year, she was told after further tests for cholesterol that the result was not high, however was prescribed Simvastatin 40mg 1xday. She has since developed muscle symptoms - so much so that often she is in pain and can barely walk. Also has swelling in legs. Has anyone else developed these symptoms?

Hi my name is Angie i was 15 at the time and a only child from a single parent when my mom was put on 60mg of prednisone because she was diagnosed with a blood disorder called ITP(idiopathic thrombocytopenic purpura) she had been hospitalised for about 2 weeks and then was released but still was on the prednisone as time went by my mom had to stop working, she gained about 100 pounds on a very small framed body,her hair grew very fast, tremendous stretch marks, mood swings, just about everything on the list. She was to have a Splenectomy on Sept 13 2005 she had her surgery and it went perfect and was shortly released. 1 week after surgery she was having very severe hip pains, we took her to the hospital and she had X-rays and all sorts of tests done but nothing was found so she was sent home with pain meds. 2day later she was taken back to the hospital the pain had gotten worse, while at the hospital she had been told she had a fractured pelvis and was put on bed rest and given MORE pain meds. The doctor had mixed the 2 medications given and they counteracted eachother.During the 3 days she was home she had overdosed on pain meds because they counteracted eachother. On Sept 27 she had a meeting with her surgon and was admitted to the hospital for a drug over dose and broken pelvis. She had a bone scan and the doctors found she had also 3 broken ribs a broken tail bone and a bone infection. HOW? you may ask.... because the prednisone made her bones very weak and the weight she gain, her body collapsed on itself. My mom put herself into a coma for 2 weeks and was in the ICU for 3 weeks. She is now awaiting surgery because her hip is collapsing because of Avascular Necrosis she is bed ridden and is very heavily sedated...my mom hasnt been home in over 4 months I just wanted to tell my story in hope that people will listen and that no one will have to go through this just as I am.

I was on Alesse for four years and felt I had reached maximum bloat, so decided to discontinue the pill altogther this fall. Unfortunately, my acne problems surfaced again (after a year and a half after a six-month course of accutane). My skin got really bad and was getting oilier and oilier. I thought I'd better get back on the pill again to get my skin at least somewhat under control. I also considered going to my derm and ask for spironolactone to help with my skin's over production of oil. While doing research on BCPs that were purported to be good for acne, I landed upon Yasmin, and asked my OBGYN for it and she prescribed it to me. Yeah! It's been a godsend.

I started around the holidays this past December and it addressed my oily problem within the first week of taking it. And it doesn't make me bloat! I swear I've lost 10 pounds of water weight that I was carrying before. I still have to keep a lot of attention to my skin to control breakouts, but not being so oily helps out a lot.

My only complaints are with the diuretic effect, I'm up in the night having to go to the bathroom, sometimes as much as three times. And if it's rather early in the morning I can't get back to sleep. I'm a little moody, but it seems to be the case with birth control pills. The moodiness is nothing excessive. I'd be a lot moodier if I had my old icky oily skin back and had to go back on Accutane.

I have not experienced the fatigue or other negative side effects that people have mentioned here. In fact, it seems that all the possitive side effects that Yasmin was purported to have have worked for me.

I'd be very upset if Yasmin was taken off the market. If you find that a birth control pill is not working for you, go back to your doctor and try another kind. I remember a friend in college who had started taking the pill and she had terrible side effects, like bad headaches, terrible moodiness, felt like her heart was palpitating, and I told her to go and get it switched. Evidently the one that she switched to was perfect because she's been on it ever since. Works out perfectly for her, no bloating, etc. Maybe a little crabbiness, but seems hard to avoid that one.

At any rate, I've been very happy with Yasmin. As birth control pills go, it's practically perfect for me.

I'm 18 years old and I have been taking high doses of prednisone for over 3 years for a blood disorder known as hemolytic anemia. At one point I was taking 80mg a day. I am now on 30mg a day. It is unknown whether my body will ever be able to function without the steroids and chemotherapy has even been suggested by one doctor. The difficulty of having massive amounts of weight gain (30 lbs. in 3 months) during high school was virtually unbearable. In addition to that, I now have to take 2 antidepressants to counter the mood swings and depression that the prednisone causes.

I am 54 and have recently been diagnosed with a lung disorder known as Boop as well as hemolytic anemia both of which require massive doses of steroids. I started out on 100mm for ten days, IV. and went home on 80 two weeks later. I am now onn 50 daily and weaning off 1omm at a time to see how I am doingl. Both illnesses are life threatening if not treated so I really don't have much choice. I may even need chemo for the blood disorder as well.
I have the same miserable side effects you all mentioned. The moon face is like looking in the mirror at a monster I don't recognize. My mood swings are awful, I get so angry at my husband and son as they just don't understand what it feels like. All the aches, the insomnia, the weight, bloat and pains in back and side. I know that I have to be on this for a minimum of 6 months manybe more and I can't stand looking and feeling like this. I already had a weight problem because of meds I am still on from when I had Breast Cancer five years ago and they put weight on as well. (I used to be a size 5 and now I can't even look and see what size I wear. Of course I guess it is better to be alive and fat then dead and thin, but sometimes I don't feel that way. Why can't they find a drug that can work withougt all these other side effects.