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 9th
2007
1:37 PM
I have been on topamax for almost a year now. I had been having a nearly constant migraine cycle for three months which had to be broken with migranol nasal spray. I then started on escalating dosages of topamax. By 100mg I realized that life was wonderful but that I couldn't retain much information which was a problem as I had just gone back to school for an advanced degree. Upon consultation with my doctor, we reduced my dosage to 50mg and things improved dramatically.
I have experienced some fingertip and toe tingling which have been completely tolerable. I take the medication right before bed so that I don't have problems with fatigue during the day. I do get out of breath easily when I exert myself and carbonated beverages taste horrible. But my migraines are under control.
I have a Ph.D. in molecular biology and a few years of neuroscience research under my belt. I would like to say that it is EXTREMELY important for people to understand that no medication is going to work identically for any two people. What works for one person, may not work for everyone. I know people who swear by imitrex but this medication does absolutely nothing for me. You have to be your own advocate when it comes to medications and treatments. Your genetics will also determine how well, if at all, you respond to any medication. For some topamax is a life saver, for others it will be the bane of their existence. This will always be the case for any medication. Be tolerant of others' experiences and understanding of each others' pain and progress will be made.
-- By biogoddess | Reply | (3) replies | Private Message me
September 9th
2009
11:14 PM
My daughter is now 20 years old. she received her 1st gardasil shot in 3/08 and the second in 8/08. She didn't get the last one and will not be getting it. From the day she got the first shot we should have known something. She nearly fainted immediately after both shots and complained of weakness and flu like symptoms. Started feeling poorly in the days and weeks to come. It was the end of her senior year the doctor tested her for mono. and it was negative but she had an extremely heavy schedule at high school. He chalked it up to the stress of that. Between the two shots she started having numbness and pains in her hands,elbows and arms. She continued to feel poorly and terribly irritable in the upcoming months. We saw a orthopedic doctor for her pains in her arms. He referred us to a neurologist. She was beginning her first year of pharmacy school and we put off the neurologist because she didn't have much time until spring break. During her 1st year of school after her 2nd shot. Her personality changed completely. Became insecure, moody, very anxious , constantly complaining of flu symptoms, bladder infections and had a hard time urinating. When my daughter returned home from her first year away at college I knew immediately that she had changed. She had been a very bright, intelligent, independent daughter and came home the daughter from hell. I couldn't believe what I was seeing. She was miserable, disliked pretty much everything. I had been talking with the doctor and friends over the course of the year and they all said that she was in a very stressful field (pharmacy) and college life takes some time to adjust. Then just a few weeks home from college she was complaining of dizziness, light headedness, headaches and saying she was having an episode. I thought maybe low blood sugars.....until I witnessed one. She was having Myoclonic seizures. She could feel them coming on but couldn't move or react. By the time I witness one of them she hadn't slept in 3 days. She was diagnosed within a week seeing a neurologist and having 50 to 60 a day. It took 4-5 weeks to get them under control in and out of the hospital . She has been on many seizure medicines it seemed like if it worked to stop the seizures she had crazy side effects. She was diagnosed with Juvenile myoclonic epilepsy. No one in our family has ever had seizures. I asked about the shot right away everyone said no and it was dropped. Since last July 08 we have been trying to help our daughter get her life back and it has been the worst year of our lives. She was unable to return to pharmacy school. The first fall 08 she was completely disabled. It looked as if she had had a stroke. They were saying it was the meds or maybe she had a breakdown of some kind. I am learning that it was side effects of this horrible shot. This is why I am posting this lengthy message because I wanted to let other people know that you and your daughter are not crazy!! We just started 2 weeks ago investigating the possibility of the gardisil shot being the reason for this madness. We have learned many things and are very sure that it was the shot that change our daughter.. I was contacted by a friend of a friend about a similar girl having the same pains in her arms and the focal seizures. I am learning more and more everyday about similar situations.. If this information can help one person it was well worth the time to jot it down. I will be praying for all of your families out there dealing with side effects from this vaccination.. I will let you know what we hear when we visit the neurologist at the end of the month. Any comments or information that may help us help our daughter can be sent to ******
-- By tdrich | Reply | (3) replies | Private Message me