Little hope symptoms and conditions

I'm 15 years old and i've been taking prednisone for a few months, and from what i've read i'm on a really high dose. i was diagnosed with rheumatoid arthritis and another autoimmune disorder concerning my muscles at the same time. my doctor told me prednisone was my only choice; it was either that or i would lose the ability to walk. he told me there'd be side effects, but i had no idea it'd turn out like this or i would have fought harder for another course of action. i started out on 30mg twice a day, and since then was weaned down to 20mg twice a day and now i'm down to 30mg once a day. i've been looking up a bunch of information trying to figure out if there's a way to lessen the side effects or any hope at all that they will get better. apparently there isn't much. after reading a bunch of these stories i gotta say i'm not feeling great about this. i totally understand everything everyone is going through. i'm sure you can imagine what it's like being smack in the middle of high school with a huge puffy face, acne so bad on my face, chest, back, neck, and shoulders that wearing a bra could put me in tears, and mood swings so bad i've lost friends over it. everyone knows how brutal high school can be, where appearance and attitude are everything. and i try to tell my doctor about it and he literally looks at me like i'm a whiny teenager and says "you're just going to have to deal with it." and people like my mom and my closest friends don't get it either. nobody understands how beyond frustrating it is. i'll get into the worst moods and not have a reason for it, but i'll stay angry for hours or burst into tears over someone looking at me the wrong way. it'll get to the point where i have to isolate myself from other people because the abrubt mood changes get so bad. as bad as i hate to admit it, the pain from the arthritis is gone now and supposedly my muscles are doing better too. developing arthritis caused me to have to quit cheerleading, something i've loved doing for 6 years, because the pain got to the point where i couldn't get my arms above my head or bend my knees. however, i'd almost rather deal with the horrible joint pain than deal with the side effects of prednisone. if your doctor gives you and alternative method, take it. i've always been confident in the way i look and really outgoing and happy and now i sometimes catch myself thinking about suicide. that's shocking to me because i've got so much going for me, but this medicine makes me miserable. and when i complain about it, anyone i'm talking to just looks at me like i'm being a cry baby. my mom does too, she'll say things like "you just have to do this. i know it's not what you want but to be honest i'm sick of hearing you bitch about it."
i feel a little better knowing other people feel the same way - like nobody gets whats going on with them. the prednisone does give me days of really great euphoria and days when i feel like i could run a marathon, but waking up in the morning to the acne and huge face puts me to tears every day. i have to pee all the time, usually getting up at 2 or 3 am. i don't sleep well anymore and i do sweat all the time. which also sucks being a teenage girl. i'm always hungry, and when i eat i never feel full so i don't know when to stop. my neck and face have put on so much weight that when people see me in the halls or out and about they ask me what happened. mind you these are people i don't talk to, just ones i know from classes or whatever. and it's pretty bad when teenage boys i've never really talked to ask what happened to your face. kind of a blow to the ego, or whatever is left of it at this point.
i'd like to know if, as my dosage gets lowered, the side effects will diminish and when i'm off the prednisone completely if they will disappear altogether. any help there?
or if there is any way to help the acne or puffy face

my doctor just put me on something called methotrexate or something like that to help wean me off the prednisone, and does anyone know what those side effects will do? or if they'll affect the prednisone side effects?
i'm constantly obsessing over gaining weight and what my skin looks like and what i eat and how heavy my face feels and the occasional pressure in my eyes to the point where i just want to be put out of my misery.
and after reading other people's stories i really don't understand why this drug is still given out as freely as it is. but maybe all doctors are like mine, they just don't get it.
best of luck to anyone who's on prednisone, my heart goes out to you; i'm right there with you
sorry this became like a book it wasn't meant to be this long

Within one hour after my first dose of Lisinopril I was having severe sinus congestion and mild dizziness. Since this seemed like a rather mild problem I naively continued to take my 10 mg dose every day. At first my blood pressure did drop a little, but within two weeks it had begun to climb back to the 150/90 range that I was having when it was prescribed. In addition I soon began to experience intermittent diarrhea, headache, vague moving pains in my abdomen, itching which interferred with my sleep, leg cramps, heart pain, anxiety and continuing increase in blood pressure. After calling my doctor's office and explaining all this to the nurse I received a return call telling me I was to DOUBLE my dose and assuring me that I had not been on the drug long enough for it to take effect. Especially concerning to me was the statement that the heart pain was because of my high blood pressure and that doubling the dose would resolve this. Foolishly, I did in fact double the dose for a week. During that time all of my symptoms worsened until I awoke one night with severe chest pain. My husband took my blood pressure and it was 220/120...............this as I was lying prone in bed after having just awakened from two hours sleep. At this point I was certain that my problem was more the drug than the original elevated blood pressure. I quit taking the drug immediately and within two days I was feeling better and my blood pressure was down the the original elevated level. I have now changed doctors, however I have little hope that the change will help as he has put me on a different medication ( which makes my ankles swell) and tells me that if the swelling continues he will put me on lisinopril with hydrochlorothiazide..............he does not believe that any of the symptoms I was having were related to that drug.

2 1/2 years ago I had my Mirena IUD place. I had the normal weight gain and steady bleeding which were side effects I was warned about. Sure enough after 2 months or so my weight returned to normal and the daily bleeding stopped. In fact I haven't had any periods since, which I was really please about b/c that was the reason for having the IUD in the first place. I have 4 children and my husband is fixed, but my periods were so heavy I had a hard time dealing with my iron levels, so the Mirena was recommended. I have raved about not having my period anymore and the freedom it has provided.

However, recently I have been suffering major anxiety, to the point I am currently off work for 4 weeks. I am a stock broker so everyone is convinced its market related. But all along I have said I don't have more or less anxiety if the market is up or down. I just feel as though I have almost in a car accident and my body is in a constant state of "fight or flight". I have been placed on heavy med's to try and correct my current imbalance. These med's are very powerful, for the past 6 days I have been asleep of 17 hours out of 24. Anything this strong is obviously pretty powerful. I have been discussing my current condition with friends and saying my instincts tell me something else is going on. I've been suspecting that something else in my environment could be contributing to my imbalance. So i have been looking into my IUD. My first signs of anxiety were 9 months after having it in, but I treated my anxiety with exercise and healthy living and got on with it. Today I found a website with many women with my exact symptoms:*****
As a mother I have learned to listen to my instincts, and at this very moment I am convinced that my Mirena IUD has over time created an imbalance which is responsible for my current poor health, and tomorrow i'm getting it taken out!

Update on my post of Aug. 11th. I did see a neurologist who was a bit skeptical, but after looking it up did acknowledge that this drug can cause tendon ruptures, etc. Later that week he did a nerve conduction study, both the one with the needles and the one where they shock the muscles. He was happy to report that I did not have any "nerve" damage. I had already told him that I did not think I had neuropathy as the numbness had gone away and was just replaced by the constant pain in my joints, etc. I then went to see my rheumatologist who was also just as skeptical that the drug could be causing all the pain I was describing. She said she had had three patients with tendon ruptures, but nothing else. I really don't care what she believes, and I told her so. I know what happened and what horrible pain I have been in ever since. I hate to report that the pain in my feet, knees, hands, hips, back and now my neck are not any better. My insomnia is some better, but I am taking more Lyrica. I tried a different antibiotic yesterday for the sinus infection called Clindamycin. OMG! I took one pill and within a few minutes had unbelievable heartburn. That lasted for 12 hours, along with reflux, burping, weird stomach noises. Now, I can't take that. Doctor called in a prescription for Augmentin this morning. Afraid to try anything now, but guess I will give it a shot. Is anyone getting any better from their joint or muscle pain? Some encourgement would be good. Thanks.

I discovered this site last Wednesday morning - without taking the time to list all of the grief I felt reading through the pediatric postings, I will briefly note my 4 year old daughter has been on Singulair for 2 years now. What I now realize is all the behavior issues, night screaming, etc. are so easily dismissed as stages of a toddler. She has suffered (as well as our family) every symptom and behavior listed by parents on this site with the exception of leg cramps.

Our entire family can see the dramatic results since taking her last pill last Tuesday night. The melt downs and tantrums are all but over, she even commented "hey, I listened right away" on the second day without Singulair. She is still having night terrors - I call them that because they are in no way a dream or nightmare, but rather agonizing moments that break our hearts to hear. I hope those will soon go away as well so her sleep pattern results in a restful night.

Am I angry that we have all suffered for 2 years only to find we have been basically poisoning her? Am I angry that for the 2 years her dad and I have sunk pretty low, feeling inadequate as a parent to teach and discipline our child? Am I angry that after 20 years of marriage, raising a great 16 year old in the midst of all this, we were to the point of the ADD, bipolar, etc. theory that would have been misdiagnosed? Heck no, we are all so thankful to have come across this site and are so giddy and excited to be happy again.

What I am angry about is this - when I called our pediatrician last Wednesday and relayed what I had seen on the Merck website for side effects added in recent months she had not heard this information and asked where I saw it. At that point I had not seen this site. I asked her how is it the well dressed pharmaceutical reps come in with doughnuts, exotic trips, etc. to market a drug with "ABC" treatments and "XYZ" side effects, continue to market the drug and never update the doctors when original selling points are altered - ie; new side effects.

The FDA website is troubling for two reasons: Merck is in charge of their own investigation regarding recent complaints and the FDA expects this to take 9 months. Gee, who gets to investigate themself? Secondly, in February the site notes the FDA and Merck are trying to find the best way to communicate the concerns being investigated to prescribes and patients. HELLO - we live in a world of real time, instant communication methods, two examples being the United States Postal Service and an internet connection.

Today is April 30 - a full two months after "trying to decide how to pass this information on" and my doctor, nor my pharmacist have received any information. Apparantly since we missed the story and coverage on Dateline we are out of luck.

I plan to start from ground zero to get our voices heard to change the way, or the law if you will, to implement an immediate communication link between the FDA and prescribes when an investigation such as this has been initiated. I realize Singulair has most likely benefited more humans than it has destroyed while on the drug and the FDA would have to clearly not communicate "panic". However, when a drug is used for pediatric treatments we need information quickly to assess on behalf of our children. In my case, since my daughter had been on the drug since 2 years old, I do not know what her "normal behavior" should be as that is the age they start to develop and show personality. Additionally, when enclosed prescribing information is updated with a prescription -MARK IT IN RED, "UPDATED INFORMATION". I read every ounce of information that accompanies a new prescription for any family member. I would NOT, however read the information every 30 days for an ongoing, long term prescription over the course of 2 years.

I am looking for anyone that may have started contact with a congressional representative or otherwise to change the communication to our doctors. Please note - I am in no way interested in any legal action regarding Singulair and our nightmare. We are moving forward and do not wish to live the nightmare one moment more. I simply want to see our doctors and pharmacists have vital information as it happens.

Thank you to all for sharing your experiences - I truly believe it is changing lives and making a difference. I am personally telling everyone I know about what is happening with our child and all of yours. Andy by the way, by telling one of my long time friends our amazing discovery, she realized she had been suffering from depression for some time and chalked it up to various things going on in her life. She had her last Singulair last week and feels tremendous! So keep the word going!

I've been taking Cephalin Monohydrate now for two days: one every hour and my heart seeded up a double (up to 120 beats per minute). I'm taking it tonight cause I afraid I might have a heart attack if my heart beats get faster. I stopped taking now for nine hours and my heart beats are getting back to normal little by little.
Hope this could help you.

I want this thing out of me! I've had this thing (Mirena) put in about a month ago and been feeling like crap ever since. I was diagnosed with endometriosis when I was 16 years old and I am now 29. Cause of this condition I have had 4 laparoscopic surgeries. With a little hope and faith I had 2 beautiful kids (girl and boy) and now I am done my family. Cause of the endo I have heavy periods and cramping. I've been trying to convince my doctor's to give me a hysterectomy, but won't cause I am too young and maybe I'm not done my family. I AM DONE MY FAMILY!! I keep on telling them, but they want to try drugs, drugs and more drugs. So they put in this iud (Mirena) and THEN give me the list of side effects. Like, holy shit!! Well since that day I have had nausea, cramping ( like they weren't bad enough before), heartburn, mood swings, hot flashes, dizzy spells, and pain during sex. What the heck is going on?? I guess I wasn't in enough pain before all of this. Well give it a week they say, give a month they say, well I am tired of it. Something will get done once and for all.

I have been taking Loestrin 24 Fe for a year now and it has really worked well for me until this month. I had a break through bleeding for about 5 days, I never missed a pill and always take them at the same time each morning. Well it came time for me 2 start and I haven't started or spotted any at all. My breast are tender but thats it and I have only missed my period once while taking these pills. Could the break through cause me not to have my period? I am so stressed that I am pregnant!! If anyone has experienced this can you please let me know so I can have a little bit of relief...Thanks.

My daughter has been on prednisone since October, 2006 -today is July 25, 2007. She is a 35 years old with asthma and allergies. Originally the pulmonologist thought she had ABPA (Allergic Bronchio Pulmonary Aspergelosis) and put her on 60 mg daily. This year has been a nightmare for her. That original diagnosis apparently was erronous, but she was kept on the high dose for breathing issues, with instructions to lower it as she could. As of today she is on 30 mg. daily. Side effects? So you know she is no "loser", she is a PhD in Biomechanical Engineering, has two patents to her credit, has spoken at numerous medical conferences (for vascular surgeons and cardiologists), and has had countless articles published in medical journals. Now she can't concentrate much less sit still, has not read a book in months (she used to read at least one book every week), she has two research publications that need to be finished but she can't focus on the work, is totally exhausted and needs to rest after only a couple of hours of mild activity, has a face she has described as looking like a mongoloid. Her beautiful, big, blue eyes are slits in her face. Clothes that fit yesterday wouldn't fit today - and those that fit today won't fit tomorrow. She craves food in the middle of the night and said she usually eats 2 bowls of cereal. She has terrible pain in her torso. Her esophagus has become so eroded she is on 6 different meds for that, and as a result cannot eat salads or raw fruits or anything that might irritate the lining of the esophagus. Her body is covered with huge dark bruises. The latest side effect made evident happened this past Saturday night. She fell striking her shins on a carpeted step. Her skin has become so thin that it actually burst open. She said it reminded her of when we'd blanch tomatoes in boiling water to peel them, and how the tomato skin would just burst open. That's how her leg was. That little fall cost a trip to the ER for stitches, tetanus shot, and antibiotics. Her husband is a career military, so since they married 1 1/2 years ago she's lived in 4 states, there's not much history among doctors. She lives now in Kansas and has started seeing specialists through the university there. We just wish she could go to Mayo Clinic for complete evaluation, but unfortunately military insurance doesn't seem to cover the best.

I have been on lisinopril for 1 year and for one year I have had a dry choking cough and have had what I describe as sever insomnia. Needless to say, I have been put on an antidepressant and ambien cr to help me make it through my days without high panic and then ambien because the insomnia has lasted for more than 3 months (tylenol, lunesta, atarax, plus about 2 others have been tried with no success).
I happened to be in my meditation to help me get thru my work day (frequent breaks or become visibly panicked). The ambien does not keep me asleep and with suspicion I am doing this keyword search and landed here. I will go back to my doctor to talk about switching and the connectedness of my symptoms. He has not listened in the past, but I hope he will or I will find a new primary. I am so very misarable without sleeping a full night and always feeling like I'm in someone else's body. I lost 42 pounds 2.5 years ago and have been told that my sleeplessness is a result of weight loss and need for less sleep. Sleep study found no apnea, etc.
I've had days where I just wanted to drive off the bridge from this disconnected and out of control feeling.
Thanks for all who contribute to this site. Otherwise I would still feel like the only one with this issue. I now have a little hope.

Hi minoosh!!

Thank you for your posting. That gives back a little hope to me, as I didn't get my normal period for over a YEAR now (went off Yasmin in February 2005!!). I really don't know, what I should do, and even don't know IF I should do something... I'm so tired of taking ANY medicine or doing ANYTHING to my body, after all I went through for about the last 1 1/2 years...

I thought, I'll give my body time until the middle of 2006 and then decide, what to do and IF something to do....

Well, nevertheless I feel very happy for you!! :)

Perhaps I'll go on and search for a naturopath, too, because I suppose this to be the only way, that something or someone can help.... But one thing I'm sure of: I'll NEVER take any artificial hormones again in my life!!

Best wishes to all of you!!

Silke

There is hope for those of you with an indentation! I had an injection for severe excema, I was literally scratching my eyes out. I received a Kenalog Injection in Oct/Nov, by January I had a golf-ball sized indentation on my right bum cheek. I was devastated! It was quite noticeable, even in clothing, as I am quite petite. I was given little hope from my dermatologist, he had only seen it twice before, one corrected itself, the other still had a dent. After a year I guess, I decided to take experiment, I increased my intake of Omega Fatty Acids, and Protein. And since it was it is fat that has wasted, I tried not to excercise my glutes. Within only a couple of months I noticed a huge difference.
I don't know if it was diet, or just the waiting it out, but my dent is almost completely gone. If you've had this same reaction, try not to stress out there .... there is hope!

to guest 12318:

You're not alone with the weight gain problem. I'm here, too!!!

After all this shit I'd gone through WITH Yasmin, this problem is now depressing AFTER Yasmin!! It's horrible!! I don't feel like my old self at all, especially when I look in a mirror.... Sometimes I don't like to go out of my house because I feel so ashamed about how I'm looking now!! All this weight came up in only a few weeks and without eating more or doing anything different than before, I swear!!!! It's a nightmare!!

But my family doctor told me that in his believe all this gained weight will go away as soon as my body is totally recovered from all the symptoms of Yasmin and the hormones are back in balance again. So there seems to be a little hope for us!! Don't despair!! It's day 62 off for you and that is not very long. So there will be better times ahead for all of us.

I too have to take some (NATURAL!!) medicine to get my cycle back in balance, because I didn't have a period after getting off Yasmin, too!! So that seems to be a common "after Yasmin problem".

Stay in there!! We'll be back to normal some day, and if not tomorrow but in a few months!! I'M sure!!!

All the best to you out there!!

Greetings from Germany
Silke

@ fairsjk:

It is DEFINITELY not enough to be off that Yasmin shit for 6 weeks to fully recover!!!

I've been off that drug now for 5 months (!!) and I'm still not really back to normal!! Especially the mental symptoms take much more time to get back to a normal level!! I know what I'm saying!! But at last there are very good days between the worse days. Well, but everyone should give it much more time that a few weeks or months.

My research in the internet and talking to my family doctor brought out that it might take nearly a YEAR to be back to 100% normal. That depends on how good your hormonal system is working. Therefore ( and unfortunately in my case...!) it may take a pretty long time until the hormones are finally back in balance again and all the symptoms brought on by Yasmin may disappear.

Just stay strong everybody, there are better times ahead!!!

I'm now taking a natural medicine called "Mönchspfeffer" here in Germany (other name: Agnus Castus) which should help to get the hormones back in balance a little bit faster and lighten symptoms of PMS, such as depression, water retention, headaches, and so on. I've been on it just for a week so that I can't already really say if it works. It's a natural medicine, so it may take about 3 months to see it it's really effective and working good for me. Maybe it's just a little hope for some of us.

All the best to you out there!!