October 10th
2008
12:58 AM
I have Autoimmune Hemolytic Anemia (AIHA), was diagnosed in Feb. 2008. Have been ill for several years and finally it came to a head in Feb. I had a blood transfusion and then in the hospital 6 days later with a hgb of 4.0. I was so toxic and my blood so screwed up I nearly died. I was given another transfusion then (total of 5 pints of packed red blood cells) and started on Prednisone. For 3 days given liquid Pred injections, starting at 1000mg, tapering down to 250mg., then on the pill form at 100mg. Sweat poured off of me dosing down. I was off work for 2 months. I am still tapering but am now at 1mg. DR. added another drug, Danazol, after getting to about 10mg because my blood started going crazy again. My side affects with Prednisone have been, Euphoria, no depression, LOTS of hyper brain activity, thoughts running a 100 miles an hour but body at slow speed.Visual problems and a feeling of being highly drugged. 2 to 3 hours of sleep each night, compulsive behaviors and a lot of pacing back and forth. Couldn't hold my concentration because my mind wandered so much. Extreme Tremors in my back, hands and head. Wanted to talk constantly, if no one was around I talked to my Chihuahua or the TV. My cheeks puffed up and became hard and had a fat pocket puffed up on left side of my neck. My dog thought I was crazy, she was tired of the lights being on at 3 or 4 in the morning. Legs looked skinny but didn't gain weight until I got to about 60mg. Gained 25 lbs total. Tapering caused bad spasms in my calves, feet and hands. Thigh muscles would get extremely weak each time I went down a dose. At 50mg I started getting sleepy and could hardly stay awake. Went back to work at 35mg and couldn't remember how to sign on to my computer. Some memory problems since I was in the hospital, couldn't remember how to spell words I knew as a young girl. Started having hip pain about 3 months into the Pred, that hasn't stopped. At 10mg feet, knees, shoulders hurt deep in the sockets, muscles below my neck knot up, may take a while to totally get off this. Read on a couple of blogs where people cut a 1mg tab into 4 pieces to taper off the Pred. because of side effects. Had thrush in the beginning and break outs of shingles. I hope to God I never have to get back on this drug again, it is so HARD on the body but it did do what it was given for, to repress my immune systems. My next step is Spleen surgery, hope this is a cure for me, am sick and tired of being sick and tired. Wouldn't advise anyone to take Pred unless it's a life or death situation. It's prescribed too liberally and people have multiple problems, worse than I have experienced. I've probably forgotten some things, but there's enough I've mentioned to give you an Idea it's not good, but if Pred is all you have then you do what you gotta do!! My puffy cheeks have went down though, now my hair has become curly but at least I have hair and my chihuahua stills loves me!!!
-- By linn | Reply | (4) replies | Private Message me
July 1th
2008
6:04 PM
Dry gagging cough, weight gain, charley horse in calves, but worse of all when I use the bathroom I have a terrible burning sensation in personal area of my body. Am using baby wipes instead of TP. The burning subsides for a while but of course is back when I have to use bathroom again. I think the diuretic in this pill may have some bearing on this symptom. I was checked for a bladder infection and it was negative, although a minute amount of red blood cells were found in my urine. I too, have had the very low BP readings, 90/68, etc. The first time this happened it frightened me so bad I got up and ran around our house and took BP again and it had risen within the normal range. I was on Hyzaar and my present doctor could not understand why I was on such a strong BP med. So he changed my to Lisinoprol HCTZ. Anyone having the same effect?
-- By capricorn13 | Reply | Private Message me
June 30th
2008
11:16 PM
The arthritis/crohn’s disease drug Remicade, manufactured by Centocor is a deadly drug and should be taken off the market. The drug has caused death and permanent damage to patients across the world. The drug company makes billions of dollars and downplays the side effects including the increased risk of lymphoma and blood problems. The company downplays infusion-related reactions saying that those reactions usually occur within 1-2 hours post infusion. Here’s the truth:
*Centocor has been reprimanded by the FDA for publishing false claims in its marketing literature given to physicians. See FDA website for official document.
*The literature lists syncope (drop in blood pressure), bradycardia (slowed heartrate), pancytopenia (dangerous drop in blood cells..platelets, whit blood cells, red blood cells etc, increased risk of lymphoma, serum sickness. The literature says to call MD if you are “pale”.
*Here is a case of what happened to a woman in her 30’s with rheumatoid arthritis after only the 2nd infusion. She was not on methotrexate at all so this is all Remicade’s fault. Approximately 2-3 days after the 2nd infusion the patient began to feel tired and sore but still worked an 8 hour shift that day. By 12 midnight the patient’s entire body flared up…every joint was literally swollen and she was vomiting violently.. She could barely get to a phone to call for help. Her blood pressure dropped to 50/40 and all of her blood counts plummeted. Her Sedimentation Rate (which measures inflammation had always been below 2 and it spiked to 29!!!) Remicade caused the opposite of what it was supposed to do. It also increased greatly her C-Reactive Protein which is also a measurement of inflammation and can cause cardiac inflammatory processes as well increasing the risk of cardiac damage. The nurse in the triage area told the patient that if she had not called for help SHE WOULD HAVE DIED !!! She ended up in the hospital for 5 days in an isolation room. She was in excruciating pain and had to be given Oxycontin every 12 hours and Dilaudid IV every 2 hours to control the pain. For the first 2-3 days she could not even walk or go to the bathroom without assistance. She was given high doses of prednisone to decrease the inflammatory process and get her pain under control. A hematologist performed a bone marrow biopsy which revealed an abnormal population of plasma cells that can develop into myeloma or lymphoma. The hematologist said that the patient would have to be monitored lifelong to watch the pre-cancerous cells. The patient was out of work for 3 months and was forced to change jobs because of her fatigue level and short term memory problems. She also suffered post-traumatic stress due to her near-death experience and total upheaval in her life. She is a healthcare professional. Even 4 years after the reaction her blood counts are still abnormal and she has still had short term memory problems and vision problems.
-- By lopi13 | Reply | (3) replies | Private Message me
March 4th
2008
8:50 AM
WARNING be aware of H.I.T.
IF YOU ARE ON CLEXANE PLEASE MAKE SURE THE DOCTORS CHECK YOUR PLATELET LEVELS BEFORE STARTING THIS DRUG.DO NOT BE AFRAID OF ASKING AS THIS IS STATED IN GUIDELINES.
THE GUIDELINES SUGGEST IF YOUR PLATELET COUNT FALLS 50% FROM WHAT IT WAS BEFORE YOU STARTED THE TREATMENT THEN H.I.T. SHOULD BE SUSPECTED AND ALL FORMS OF HEPARIN SHOULD BE DISCONTINUED AND AN ALTERNATIVE ANTICOAGULANT BE USED.
THIS IS VERY IMPORTANT; PLEASE DO NOT TRUST YOUR DOCTOR TO AUTOMATICALLY DO THESE TESTS. WE TRUSTED MY GRANDMOTHERS DOCTORS, THEY DID PART OF THE TESTS BUT FAILED TO ACT ON THE RESULTS!!!!!
My grandmother died from heparin induced thrombocytopenia (HIT).
This is an adverse reaction to the drug Clexane. Guidelines suggest platelet count should be monitored, unfortunately the hospital Doctors did not monitor her blood whilst she was on this drug. A 50% fall in platelet count should have alerted Doctors to act on their findings and discontinue the drug, instead they carried on giving it to her for a further 6 days. Her symptoms were as follows;
itchy
drowsy
bruises
nausea
vomiting
diarrhea
Because her reaction to Clexane had gone unnoticed she was still being given this drug her symptoms became worse they were as follows;
Black bruises (necrosis)
gastrointestinal haemorrhage
spontaneous bruising
slurred speech
confusion
falling platelet count
When the Doctors discovered the internal bleeding they stopped the Clexane but did not offer her an alternative anticoagulant and her symptoms after this were as follows;
Deep vein thrombosis, arterial thrombosis, she was still hemorrhaging, her platelets fell to 5 and her HB fell to 6.9 INR was normal.
She was transfused with platelets and red blood cells and then died. (Clexane heparin induced thrombocytopenia) is on her death certificate AFTER A FOUR YEAR BATTLE FOR AN INQUEST INTO HER DEATH! My research has led me to believe that most Doctors believe HIT is very rare and they don't bother to check for this condition, if the doctors had checked her blood test and realized a sudden 50% fall in her platelet level was more significant than the actual platelet count itself , then she would not have died.The 50% drop was a serious side effect of this drug.
PLEASE ASK YOUR DR TO CHECK AND TELL HIM/HER TO CHECK IF YOU HAVE GOT BETWEEN 30-50% DROP IN PLATELETS THEN MAKE SURE YOUR DOCTOR KNOWS WHAT HE IS DOING.
Jill (Lancashre UK)
-- By jillorrell | Reply | (3) replies | Private Message me
June 13th
2007
5:19 PM
Hi! I am a 36 year old female and have been on this HORRIBLE HORRIBLE drug (prednisone) for 2 1/2 years now..... Hopkins doctors still arent sure exactly what i have. My immune system is attacking my liver so to speak. My body is basically looking at my liver like it doesnt belong and is attacking it with large multiple lesions that is eating it away... the good thing is that it hasnt interupted the functioning of it yet but is leaving horrible scar tissue. I have been in and out of the hospital 13 times, have had just about every test imangable, 12 liver biopsies and they STILL have NO clue! They are leaning towards Church Straus desease and Wegners but the weird thing is i have half symptoms of both. The first year they had me on 80 mgs of prednisone a day which had seemed to put me in remission for about 4 months and then they came back even worse so i was put back on the prednisone, 80 mgs a day AGAIN along with 100 cc's of Methotrexate, another not so nice drug... i had EVERY SINGLE BAD SIDE EFFECT OF BOTH DRUGS!! This second time around was ALOT WORSE for some reason!!! My body DID NOT LIKE IT!! Nausea, hair loss, moon face, gained 40 pounds (and i was in great shape, worked out, i am 5'4 and was 110 pds!), EVERYTHING was swollen, legs, ankles, arms, neck, face, had the camel hump, fingers and especially my belly!!! UGH!!! Have bone, muscle, and SEVERE joint pain! Kaliedescope vision, dry eyes and then had mucus discharge (kindof like pinkeye), headaches, intestinal problems.... VERY CONSTIPATED and then the opposite!!! I literally felt as if i had turned into a man in my behind!!! Sorry to be so gross but thats how bad it was!!! Jaw problems, teeth and gums as well, skin sensitivity and have little bumps all over my skin (kindof like tiny little moles), itchy, broke out with acne and pretty much NEVER had more than 1 pimple a month, had facial hair (VERY DISGUSTING!!!! HAD IT WAXED EVERY WEEK!!!!) and then on top of all of that the swelling of my liver not to mention the PAIN! I was recently in the hospital again with 12 new lesions, pneumonia, and 104 fever. My doctors said the Methotrexate was the cause and i was having a bad reaction to it so they now have me on 100mgs per day of Azathiroprine. I am now finally down to a maintenance dose of 5 mgs of prednisone cause my body was starting to reject that as well. I thank god that i am now down to that dose!!!! It as only been 2 wks and the withdrawl symptoms are horrible worse then they were but i know what is to come =) loosing all this fluid and all of the HORRIBLE side effects i listed above. I will have to be on the maintenance dose of 5mgs the rest of my life and can live with that cause when my body gets back to somewhat normal i wont even notice that im on this CRAP!! I will be on the high dose of Azathiroprine for a few years and then on a maintenance dose of that as well for the rest of my life to keep whatever this is that i have under control.... the scary thing is is that they arent even sure that all of these meds will even work...... im a guinea pig..... The only thing that i am on out of all 25 pills/meds that i take everyday that works is my pain meds. Oh and i also forgot to mention that i had to be put on some "HEAD CASE" medication (thats what i call it =) ) for depression. Its a low dose but it does seem to help... I am terrified of what the future holds but continue to be strong and have an amazing support team... my fiance and family =) I dont even want to think about how i would be without them. I go back on the 25th of this month for my MRI so please who ever reads this keep me in your prayers as for all of you are in mine. I feel for each and everyone of you that has to endure this horrible drug everyday and i hope that everything works out you. =)
Sue =)
-- By sue36 | Reply | (5) replies | Private Message me
January 16th
2007
5:12 PM
Sarah
When red blood cells are damaged they are hemolyzed, meaning when they drew your blood sample at the lab, they may have pulled the blood through too small of a needle causing the blood cells to be damaged and unreadable for your potassium test?
Dont worry, nothing with you.
BittterRN
September 27th
2005
10:29 AM
I haven't been able to figure out why my hair keeps falling out. I eat well and I'm not under a lot of stress, but for months now my hair falls out in clumps in the shower and when I brush my hair etc. I went to the site for women's Rogaine, and it mentioned a possible cause for hair loss is birth control pills. Coming across this Yasmine site makes me realize that the pill is probably my problem! I don't know what to do now. I have hair loss, lowered sex drive(at age 21),and like someone mentioned, I only feel really sexy when I'm on my period(and off the pill), I'm lethargic and have depression and mood swings. I almost feel like I'm locked into a terrible cycle though, since the side effects of getting off the pill sound awful too. Does anyone know if there is a way to "wean off" Yasmine??? And what is a good replacement pill w/ lower hormones/side effects????
-- By meg21 | Reply | (1) replies | Private Message me
August 16th
2003
9:41 AM
this is not necessarily a proven side effect but during the time period that I've taken Zestril, I've been diagnosed with refractory anemia. I started taken Zestril in the year 2000. I've had mild anemia for about that same time period. About a year ago, I started having shoulder pain, numb thighs, severe mid-lower back pain, distended stomach. Weight loss. Potassium level increased.
Red blood cell count dropped as low as 31. Diagnosed as refractory anemia. Unknown cause.
All tests were done to check for cancers. All negative.
Erthropoetin shots were used to push the red blood cell count back up again. After five shots, the count dropped. More shots. I stopped taking the lisinipril and my red blood cell count has stabilized. Blood pressure went up to 150. I'm back on lisinipril. Waiting to see what happens next.
Cough yes. Sleepy in the morning and late afternoon naps. Yes.
Anyone else experience anemia since beginning to take lisinopril?
PredniSONE (5) Yasmin (2) Lisinopril (2) Uniphyl (1) Clexane (1) Remicade (1) Wellbutrin (1) Levaquin (1) Myrac (1)
October 30th
2008
12:34 AM
I've been on Wellbutrin for 3 years. My hair has been falling out more and more every month. My scalp itches horribly! It feels almost as though bugs are crawling all over it. I am irritable and have dramatic mood swings. The final straw, though, was recently when I had a blood test to find that my white and red blood cell counts had become dangerously low, and my red blood cells were swollen (macrocytic anemia).
I'm now training myself off of Wellbutrin. I tried dropping to a quarter dose and felt flu-like symptoms (chills, extreme tiredness, dizziness) and extraordinary appetite (gaining 10 lbs in week 1). I also became unable to handle simple tasks at work, and excessively negative in demeanor.
I'm now back up to 1 pill and the chills have stopped. I am hoping that I can go back down to 1/2 pill gradually.
Will my hair grow back? Is the liver/blood damage reversible? Has anyone kicked the Wellbutrin habit and recovered fully? Please help.
Thank you in advance.
-- By annabeth | Reply | (2) replies | Private Message me