April 13th
2008
5:48 PM
Hi everyone,
I am a 25 year old female who was diagnosed with Crohn's disease one year ago. I stumbled on this website and wanted to share my experiences to let others know they are not alone and that their side effects due to Prednisone are completely normal.
In Nov of 2007, I was in the hospital for a Crohn's flare up and was put on prednisone through IV (240mg/day). After a three days I was released, but one week later, had another flare up and was back in the hospital in December of 2007. This time, I stayed for 6 days and was on 240mg/day again through IV, along with taking Flagyl and fluids for my flare up and infection.
At first, I lost about 10 lbs due to the flare up and all of the medication I was on. However, within 3 weeks time, I gained 28 lbs and was a complete mess. I looked different, felt different and was emotionally and mentally drained.
My side effects included: Severe moon face, buffalo hump, increased appetite, hair thinning and severe hair loss, night sweats where I would have to change pajamas 3-4x a night, OCD to the point where I would have to clean my entire apartment (even if it was already clean), restlessness, anxiety, no sleep and sometimes I would go days without sleeping, increased thirst and dehydration, swollen eyes and headaches, depression and mood swings, upper and lower abdomen swelling and weight gain (28 lbs in 3 weeks), suicidal thoughts, unbearable muscle and joint swelling and aching, forgetfulness and memory loss, blurred vision and dark hair growth on my face near my sideburns and underneath my chin and on the bottom portion of my face. Bottom line: it was unbearable and nobody warned me about the harsh side effects of the drug.
When I left the hospital, I was put on 60mg/day and eventually weaned off Prednisone over the course of 2 1/2 months and took my last 5mg dose in mid- February 2008.
It is now 2 months since I have been off Prednisone and as of now, I have only lost 7 lbs, but much of the moon face has gone away and I don't seem as swollen in my chest. My appetite returned to normal the day I stopped taking the drug and my mood swings subsided one week after stopping Prednisone. I still have the buffalo hump, but it stopped hurting and I am now able to sleep through the night. The fluid retention seems to have moved south towards my legs, arms, and lower abdomen. My doctors say that within about 6 months after stopping Prednisone, most of the fluid retention should go away and they recommend walking for 45-60 minutes/day to help with the fluid/weight gain.
Overall, prednisone helped to save my life and put my Crohn's into remission, but is one of the WORST drugs I have ever taken. My heart goes out to anyone who has had to take this drug and trust that you are not alone--and the side effects are real and they are harsh. I am slowly seeing that it takes time for the prednisone to leave your system and my doctors say that every day there is less and less in my body.
Stay positive, stay active & stay Healthy!!
-- By vanygirl | Reply | (5) replies | Private Message me
March 23th
2008
9:45 PM
Just finished a prednisone taper. I am developing 'oral thrush' - can someone please give me a suggestion for getting rid of it quickly without having to take more medication??? A mouthwash or something - please this is awful.
Thank you for your help.
Vanessa
-- By vanessa74 | Reply | (3) replies | Private Message me
February 9th
2008
12:24 AM
I am a 35 year old women, with severe asthma. I have had asthma since I was four years old. I have been through numerous meds. Currently I am taking Singulair, Combivent, Advair diskus and thte 7 day Predinsone. In July 2007 i had a severe asthma attach where i almost lost my life. In the past I'd rarely take the Advair, but since that last time in the hospital i have been religiously taking it. Right now i have a severe chest cold and i am taking theraflu and vicks cold meds and i am noticing strange things. Irregular heartbeat, feeling bloated, some anxiety and my weight gain. By reading the other posts and this whole site, i know believe i should ween myself of this Advair again. It is too much to worry about ...
-- By tripleee22 | Reply | (2) replies | Private Message me
November 10th
2007
3:02 PM
I had a sore throat. The first doctor said mono. The 2nd doc. said no mono or strep --must be viral. Third doc says viral and puts me on predinsone, levaquin and darvocet because my uvula was swelling from infection. White count was elevated and had low grade fever. That was Friday..............................The Monday after that I had severe pains in my left side. After teaching went to ER they said gas after 2 minutes. Next day level 8 pain same side went back to ER. They said skeletal prescribed me 4 more drugs and told me it was viral too. Went to internist on Wednesday had to miss teaching he scheduled CT on Thursday morn. Level10 pain almost passed out on Thursday eve missed school/teaching. Friday admitted to ER at different hospital beyond any level of pain I have ever had, blood pressure through the roof, heart palp, they gave me morphine and phenagrin and muscle relaxer for spasms.
Here I am a perfect state of health get a sore throat and the next week I am in the hospital because of the 2nd ct saying that I am full of poo. 4 weeks later I am still in pain, missed 12 days of teaching and now they say i have ibs. I miss my active life before. I believe the combination of these drugs caused this. I am young no children and very healthy. Ultrasound,s blood works, 2 ct scans with dye, colonscopy, xrays show no probs. Which is great but still in pain. Anyone PLEASE HELP the doctors are taking their sweet time while I have lost weight and stay in bed which helps the pain. Bending over, lifting, eating, pooing, sneezing, coughing, hiccuping can make it worse. It is intense SHARP pain. I have cut out everything med wise except for Miralax and now I have diarrhea and joint pain.
They want me to take Dicyclomine and IMIPRAMINE, MIRALAX and Levisin sublingual and Diflucan.
-- By cabarron | Reply | (9) replies | Private Message me
October 28th
2007
7:41 PM
I am a physician and have prescribed levaquin to many people. I have had some of them complain of what they thought were serious and variable side effects but mostly I attributed their problems to anxiety and hypochondiasis. I now know differently. I took levaquin, and for over a year I have had serious CNS anxiety, insomnia, joint and tendon pain, and widespread peripheral neuropathy. It has been an awful time and since realizing that the effects are often long term I have been able to identify many other patients who have developed serious long term problems with anxiety, depression, arthropathy and tendonopathy, neuropathy and possibly endocrine effects like gonadal failure and worsening of diabetes. There are no long term studies done post marketing to identify these effects and to unify all of these problems into one syndrom of fluoroquinolone toxicity. This is a big problem and I believe thousands of patients have been adversely affected by the use and misuse of levaquin and probably the other fluoroquinolone antibiotics. I have other colleagues who are beginning to recognize the long term consequences of levaquin and the fluoroquinolones. More research and study needs to be done. In the mean time I am sure that Johnson and Johnson, Ortho- Mcneil, will continue to refute that the incidence of serious adverse reactions is much higher than they report.
-- By reynolds | Reply | (4) replies | Private Message me
July 22th
2007
5:40 PM
I have now been on predinsone for 4 months and I started out at 102 and now I weight 120. The worst part about this is the moonface and the bloated stomach. The doctor said that once I get off the drug that my face will go down but not the weight. Also, I have really bad mood swings.
-- By longhorns22chick | Reply | (1) replies | Private Message me
June 30th
2007
4:49 PM
I was given prednisone for extreme posion ivy at 4years old. I ended up getting posion ivy at least 6 times a year until I was 12 years old. I had posion ivy so bad that my doctor would give me a predisone shot and the pill form along with something to stop the itching. By the time I was 6 years old I noticed my clitours had enlarged, and I was able to have mutilple orgasm's, at that age I didn't understand what was going on but I didn't care. I started to notice I was the fastest and strongest child in my school. I became very muscular and a little agressive. These side affects got even more extreme as I got older. I wasn't sure why I was the way I was, I just assumed that it was normal, but I knew I was different then the other girls. I ended up having over 100 shots of prednison by the time I was 12 years old. I stoped getting posion ivy when I was 13 and stoped taking predinsone. I became real tried and wanted to sleep all day, were before I had so much energy. It got to a point where I lost all sexual feeling and I became very depressed and frustrated. I just spirled down from that point not knowing why. I had sex for the first time when I was 16 and it was painfull, that's when I knew something was reeally wrong. I started looking for answers and found that taking prednisone had made me feel great when I was taking it but once I stoped I didn't even feel like a person anymore. I got posion ivy again when I was 21 and was given prednisone again. I started to notice that not only did my posion ivy go away but I got my energy back and sexual feeling for about 2 months, I was a whole new person. That's when I really relized what had happend. I went to a doctor and told them what I had experianced. They checked my hormone levels, and found out that my body wasn't making enough testosterone or estrogen, explaining why I lost energy and sexual feeling. I started taking depo testosterone and it has changed my life. The doctor's were hesitant to give it to me, but when they saw the changes in my hormonem levels and the changes with me mentaly, we decided to keep taking it. I ended up having to find my own answer's because no doctor understood why I was feeling that way. I will have to have hormone therapy for the rest of my life. Doctor's told me before I started taking testosterone that I had the hormone levels of an 80 year old women, and I was only 21. Now I am 25 and have been on hormone therapy for 4 years, I am only half way there hormonally, I hope I get to feel like a noraml 25 year old, but I might not be where I need to be until I'm 30. I lost so much of myself and my life to this drug predinsone. If I could re-du it I would have never taken it.
-- By ashleyg | Reply | Private Message me
January 5th
2007
7:12 AM
I'm posting after being given predinsone in the ER for hives and head swelling, still not sure what the reactiion is from, 50 mg for 7 days, then i finished it all and two days later the back of my neck hurt so bad i couldn't lay on it or move it, it lasted one day/night, my hands are still swollen and itchy 3 days post prednisone.
-- By eroccatani | Reply | Private Message me
January 12th
2006
8:09 AM
I have been on predinsone for 14 1/2 years. I have had weight gain on and off and now I am up to 270. I have chronic asthma, MS and bad allergies. I had seen a specialist years ago and they said I would never go off prednisone. I am dependent on it. Two different times in these past years I had gone down to two 1/2 mg. I was able to lose weight and I felt pretty good. I went down 85 pounds. I promised myself never to let it happen again. haha. I have 6 children and 3 grandchildren. I am 44 and have been married 23 years. My husband loves me the way I am (so he sayes) but I am very depressed and unhappy about the way I look and feel. I have moon face, I am obese, I have the lump on my back, I am taking numerous other medications for my asthma and MS. My nurologist has given me some anti depressants and I guess it helps but sometimes I just feel like asking if it is all worth the trouble. I can't take it sometimes, I just want to run off the side of the bridge. Then I think about my family and my mom who lost two sons, one to asthma when he was 17 and one who was shot when he was 21 and I know she couldn't take losing me. I recently had a dose of solumedrol in the emergency room and the next day my doctor took a CBC and dif. It came up that my wbc was 20,000. He said that was very high and I just wanted to know if anyone else has had a high white blood count after a dose of solumedrol.
-- By mary.carben | Reply | Private Message me
May 16th
2005
7:06 PM
I have been on awful Predinsone for 4 years for an auto immune brain disease. Starting at 90mg per day now after 4 yrs down to 5 mg (slowly going down all of these years). The weight gain from the 90mg per day has been horrible! Does anyone know how long to expect it to take for the weight to start coming off. Some of it has been coming off SLOWLY!! Any advice would be greatly appreciated!!
-- By denver | Reply | Private Message me
May 27th
2004
3:28 AM
I was given doxycycline by a medic because I was feeling ill. Within three days after I started taking it my lower extremities swoll up like I was on predinsone. Does anyone out there know if doxycycline can do this?
-- By lamar_hudson | Reply | Private Message me
August 6th
2003
6:32 PM
I am a female, I went to my doctor Maybe a month ago with a urinary tract infection, He put me on levaquin. I begun to get a little better but the infection was not completely gone, So I called him back and went a second round with levaquin. That was like a month ago. I went back to the doctor with a rash that would not seem to go away. It started on my feet and then my legs, he told me it was Chigger bites, he gave me an anti-inflammtory drug, predinsone,and a lotion for itching. Shortly after that I pulled muscles in my shoulder and neck swimming, Went back to the Doctor, Was told I just pulled some muscles and was gave muscle relaxers and loratab. My rash by this time was much worse, it had spread to under my arms, buttocks, arms. Basically all over. I went back to the doctor today and was sent to a dermatologist. She right off looking at it close under a light, Said I had a drug reaction. The rash had spread to my throat and she was concerned about that. We went over all the different medication I had been on, I absent mindly forgot about the levaquin. She told me to refer to my medical record and try to find out what drugs I had taken in the past, That I didn't normally take. Levaquin was it. Be careful taking this medication, Drug reactions can be very dangerous. I am almost 90% sure that it was caused by the levaquin. I will touch base tomorrow with my dermatologist to see what she thinks about the levaquin- But after reading all of these side effects you all have had, I am convinced. Next urinary infection I have, I think i will ask the doctor for a different antibiotic.
-- By janicelma | Reply | Private Message me
PredniSONE (9) Levaquin (3) Advair Diskus (1) Doxycycline Hyclate (1)
April 24th
2008
1:16 AM
My 30+ year run with Prednisone
-- By dsinclair | Reply | (1) replies | Private Message meMy experience began back in the 1980s when I took 2 aspirin for a headache one day and landed in the hospital with difficulty breathing. I was diagnosed with Chronic Asthma Triad (Aspirin Sensitivity, Sinus Polyps, and Asthma). My doctors (Allergist & ENT) prescribed Prednisone to help with the asthma and control sinus swelling in does ranging from low 15mg up to 80mg per day with weening off periods lasting weeks to months. Over the next 9 years I underwent 12 sinus surgeries ultimately obliterating all of my sinus cavities. Chronic asthma continues today and I have now developed additional lung disease I was followed at UCSC Medical Center in San Francisco after being diagnosed with Bronchiolitis Oblitersans, at which time I was fully disabled, unable to work at all for almost 2 years. This was the most difficult period in my life.
Over the years dealing with chronic sinus disease and controlling my lung and airway diseases I have made many trips to the ER and experienced many hospitalizations. I have not been off of Prednisone since this all began. With so many doses of steroids both by IV and by mouth with tapers in doses ranging from 120md daily (by mouth) to a low maintenance dose of 5mg per day. Believe me when I say that I know the side effects of this dug all to well. Initially I experienced bloating in the face and body, a rash that still remains today. I have developed significant bone density loss and now experience joint pain full time. From a mental side effects stand point I am in a state of fluctuating brain fog, memory loss, and confusion. At times I get baffled easily. I continue to experience mild to severe mood swings.
I am currently working full time with great difficulty and at this time taking 40mg of Prednisone daily to control my difficulty breathing and severe shortness of breath.
Of all the side effects it is my memory loss that has been the biggest impact on my ability to work and communicate clearly, I am having difficulties performing at work and at home. I had no idea this medication could have such an impact on daily living.
The bottom line? Prednisone truly is a two edged sword, on one hand a wonder drug and on the other a destroyer of mind and body.