PredniSONE and hair loss

I have Crohns and had a flare up so I'm back on 40mg of Prednisone. I've been on 40mg now for 3 weeks and I start to tapper off in another 3 weeks. Well every time I start the prednisone again I get new side effects. This time, my gum are bleeding all the time and the pain in my knees are horrible! I still get the regular side effects, ie: Mood swings, joint pain, sleeplessness, sweating, swelling of my legs and hands, wanting to eat everything under the sun, moon face and my hair falls out! I wish the drug manufactures could develop a drug that would not be so hard on our bodies. I have to struggle with the pros and cons with every flare up. Do I want the weight gain, mood swings and hair loss or do I want to look good and be very sick! I'm 37 and was 16 when I found out I had Crohns.

I took prednisone for 6 days ( the pack). Six the first day and five the next till day six I had one pill left. I have never experienced hair loss like this. I have a patch of hair that fell out in a circle the size of a 50 cent piece. I didn't notice it really falling out but noticed a bald spot and I freak out. I came on line to get info about this medication. This drug was ordered for me because I have severe pain in my back due to osteoarthritis, sciatica and back surgery. I was told taking this would help with the inflammation and might relieve some of the pain symptoms. Well, I think the pain would be better then the side effects that I suffer. I had loss of appetite and acne on my face. I feel dizzy and bloated. I pee all the time and seems like i visit the bathroom much more often for other reasons too. I have felt like a crazy lady and have less patience than normal. I hope that this does not last for ever. This is a small amount of the medication. I am sorry for those of you that have experienced a long period of time on this medication. I pray for you that they will find another alternative with less effects to your bodys.

I have been on prednisone for 5 1/2 months now, I was hospitalized starting in February until like the 25th of March for a bad exacerbation(sp) of my ulcerative colitis. I have taken prednisone for 9 1/2 months out of the last 17 months. I have experienced everything from growing facial hair I don't want to loosing what hair I do in a short period of time. Most of my hair loss started after I weaned off the prednisone about one week ago, or lets say it got much worse. I also while on prednisone got have got to experience the lovely side effect of pysicosis(sp) and am on meds to couter react what it has did to me. This is a evil and horrible drug, I hate it with a passion for all the harm it has did to me. I now have joint pain, restless sleepless nights, night sweats, tremors, not to mention the rapid weight gain. And to top all this off I am still not in remission, so this drug was used all in vain. Please be careful using this awful drug and if you have to use it, only use it for a few weeks at the time and not long term...the side effects can be horrendous and sometimes like in my case permanent to some extent. I do wonder about the hair loss, it has been worse this time than ever...I hope it stops soon.

I have been on prednisone since November 2007 for minimal change disease, 65 mg, in May I started to decrease the dosage (per Drs. orders) and by the time I got to 15 mg all my symptoms came back and I swelled up again. I was again put on a higher dosage of prednisone and put on Cytoxan 75 mg. I am now decreasing prednisone, back to 15 mg every other day and will be off Cytoxan next month. Hopefully this will work. Right now my main complaint of side effects is chest pressure, anything I eat or drink makes my stomach swell and I feel like I can never take a full breath. I recently had chest and abdoman xrays and an ultrasound, all negative. Does anyone have this symptom? I also have moon face, weight gain, hump on back, insomnia, headaches, digestive problems ,shakes, night sweats, vision problems, extreme tiredness and hair loss. How long before all this goes away?

My wife just met with her oerthopedic surgion about a total knee replacement and the Dr. could not understand why, at her age,she could have such advancded osteoperosi. The result of the query was that her doctor had her on Prednisone for over a year and it should only be used ,at most, for two weeks at a time. There is nothing wrong with the med if it is properly prescribed but if you are experiencing hair loss,colin symptoms and any joint problems PLEASE see another Dr.

12/13/07 I took Prednisone for 5 months and now my face has finally went back down but not the weight. I got back on it again but this time I wont be on it as long, I have already notice within 3 days of taking it I can't sleep at night. I am taken 20 mg , two in the morning a day....

PLEASE REPLY! ok i wrote on this board about a month ago, and i was complaining about all the horrible side effects i was having.....however things have gotten much much worse since then, and i must admit that i have been bad. very bad. i am secretly winging myself off of the steroids b/c I cannot handle the depression and not being myself anymore... I've been on Prednisone for a year now and started winging myself from 15mg when I last wrote on here to now 10 mg... my hair is falling out in HUGE clumps, and I am NOT overexaggerating when I say I am going bald... does anyone know if this could be from tapering the drug, or would you say it is probably because of my condition possibly returning from tapering the drug too low???? I just want to know if IMMENSE hair loss is affiliated with steroids...I have not seen anyone else mention anything.

Hi, I was on Prednisone for a little over a month for Crohn's disease. I had minor side effects while taking it: couldn't sleep, no patience, dehydrated, dry eyes. It is the side effects from AFTER stopping prednisone that concern me. I''ve been off Prednisone for 3 weeks and I think I am losing my hair and getting acne-that I didn't have before or during taking Prednisone. Anyone experience side effects that started after stopping the med?

Severe hair loss/thinning. I've been on a low dose of prednisone for 11 years. My dose varies from 5/10 depending on the flare up. Before prednisoe, I had A LOT hair on my head.... thick, curly,healthy, shiny hair. I have about half the hair left on my head that I had before. It's now dry, brittle, lifeless, and damages very easy. It's hard to get any length on hair, because as it grows, it's breaks off...it's quite thin and has been ruined by prednisone.

I've had crohns for about 10 years. My last flareup was in December of 2006. I was on prednisone for 2 1/2 months. Since I've stopped the meds, my hair has started to fall out. It's been falling out now for two months and I'm afraid it will all fall out. I have yet to read anything about hair loss as a side effect of prednisone. What is going on?

I was diagnosed with Systemic Lupus in 2001 and have been on Prednisone since then! I started on 60 mg and am now going off of the drug.

I gained about 60 pounds, I have a classic moon face, buffalo hum (on neck), and the bloaty belly--and I hardly eat. I went from being in shape and running three miles a day to barely being able to get off the couch! Here are some of my other side effects;

*sleep issues
*gum/teeth are more frail
* severe eye problems (blurred vision, loss of peripheral vision, depth perception problems)
* excessive hair in places I don't want and hair loss in the places I want to keep it on!
* mood swings
* inability to concentrate for long periods of time
excessive fatigue

My advice on this drug--if you can--avoid it. If not--be proactive in getting your doctor to get you off of it as soon as possible at a slow rate.

I am now on 5 mg being tapered off permanently! Thank God!

Since May 1st, I was put on Prednisone for extreme physical inmobility. My first doctor (in emergency room of hospital)diagnosed me as having Polymyalgia Rheumatica. However, my specialist is still unsure as all test results have not come back. I was on a heavier dosage of prednisone and tapered off for 1 week when symptom reoccured. My specialist has me down to 2 pills a day and mobility has resumed. During this time, I have experienced skin rashes, tremendous hair loss, cramping in legs, pain in right arm, joint pains and stiffness. I look like I am pregnant at 68 yrs. old. What's with the stomach bloating? I hate the taste of the pills, the nervousness it creates. Can arthritis be this painful to the point I can't move at all? . As a woman... and vain....It makes me want to cry at the hair loss I go through every day.
There maybe more health issues with me than I am unware of at this moment. Is taking Prednisone a commonly prescribed medication for arthritis or other related issues?
There should be another drug with less side effects.

I have been on 60 mg of Prednisone since Oct. for FOcal Segmental Glomuruli Sclerosis. I think Ihave had every side effect you can imagine. I have gained over 50 lbs, I cannot sleep, I have steroid induced - insulin dependent - diabetes, high blood pressure, heart palpitations, hair loss, strech marks on my stomach, legs and under arms. I hae horrible mood swings, and joint pain. And to top it all off - the disease I was trying to fight is still here and all this seems as if it were for nothing. I am finally being slowly backed down off the steroids - but my dr. says it will be May before I am completly off.

I started taking prednisone in September at 90 mgs a day and I gained 30 lbs in three weeks and was hospitalized for five days. The weight, which was all fluid, came off leaving nice stretch marks on my stomach and my dose was reduced to 50 mg a day. I'm now taking 30 mg a day and will be down to 20mg/day in 9 days. As you can tell, i'm counting the days until I no longer have to take this stuff. My side effects include hair loss (legs), hair gain (face), swollen face, legs & feet, headaches, muscle pain/weakness, increased appetite, hand tremor, rapid heatbeat/pulse, and acne. I think that's everything. That's enough. I use to suffer from insominia but my doctor told me to take my prednisone in the morning rather than the evening and it seems to be helping.

To guest 14703,

When it comes to psychological and emotional matters, it is difficult to come up with one absolute answer. The steroid's psychological side-effects can take a toll on anyone at any time, any dose or any stage. The way people deal with the side-effects depends a great deal on a person's mental history, personality traits and inner strength.
For me, although I was taking a high dose of 100 mg a day for 3 months and so on for 6 months, I never became manic, schizophrenic or had suicidal thoughts. However, I did become a little depressed due to things I had no control over, like the abrupt weight-gain, the ugly triple chin, hunched-back, hair-loss, lack of sleep or concentration, aches in my muscles and stomach, lack of support or understanding from my partner (the list is endless!).
The physical as well as the emotional changes go together hand in hand. All I wanted to do was to get off the horrible drug and be drug free. One good thing out of this nightmare was that I learned to take better care of body, mind and soul.

Gypsi

Hello everyone and let me say I am SO GLAD I found this site. It is good to read what people who've gotten off the Pred. have to say and that hopefully someday I will maybe be somewhat the person I once was. It's been really hard feeling like I will never be the same again and even forgetting what I was like before! I've been on Pred. since July, started at 40 for a month then had to go up to 60 for like 5-6 weeks during which time I totally had my worst effects. This has been for a pseudo-tumor in the apex of my right eye which causes double-vision due to interfering with the movement of the eye. At my worst I had terrible insomnia, moon face, dowagers hump, extremely swollen legs feet and joints, constant pain, and general paranoia and anger and frustration. I've been decreasing since then and am now down to 5mg/day, but even though the feet/leg swelling is better and the dowagers hump is not as bad, it is still there plus moon face and acne continue, plus psychological effects just seem to get worse and worse even though the dose is down. Another thing which just started is I AM LOSING MY HAIR. It is coming out in clumps every day and my Dr. says I won't be all the way off Pred. till the end of January and I am afraid I won't have any hair at all left by then! (Except the dang hair on my face which is extra thick and dark compared to "before.") I have to say it is just the worst when you are already ill and then the "medicine" you have to take makes you feel like a joke of yourself in such a very public way!!! Anyways, just wanted to add the thing about the hair loss since I can't find it mentioned anywhere. Thanks again for your words of encouragement, looks like I won't be all the way better till next fall but at least that's something to hang onto in having some belief that these things are not permanent!

Emily

I have alopecia universal which is total hair loss. A doctor put me on presidone 40 mil a day for 8 months. My hair came back i could not believe what a miracle drug it was, but then the side affects started and 2 years later my right hip clapsed and i need a total hip replacement. I was only 27 years old with a year old son. This is just to let you know don't take that drug to grow hair its not worth it. That was a stupid thing for me to do. The doctor told me that happened because I took presidone with a healthy body. Now I am 40 years old still trying to get my hair back but my husband and family love me for what I am.
Take care everyone

Hi i had been on Predisone since Jan and it has been a total nightmare. It was given as to help with Pulmonary Sarcoidosis that i have. I have suffered from numerous side effects
- night sweats
- frequent urination
- acne breakout
- upset stomach
- body cramps and muscle weakness
- hair loss
- mood swings
- weight gain almost 50 lbs
- lack of sleep
I have now been off of the Predisone for 15 day and is still dealing with a few sides affects and withdrawl effects....i have notices...since the i have a very bad trembling affect to my hands

I have been on prednisone since end of February/05. 50 mg for a few months then down eventually to 20, had to go back up to 30, symptoms all came back.muscle weakness , and since I already have that with Dermatomyositis, it was a little confusing if it was helping at all.

Weight gain , moderate, but definite swelling of the face. Acid reflux a problem, hair loss.

A little discouraging, but necessary. I am now at 15 mg and going down to go off. Plaquenil has been prescribed and I have been on that for 2 months.Not really seeing improvement but have to get off Prednisone.Far too scary! Hopefully I am able to stay off it! I have always been a relatively healthy woman and I want my life back!

i am also a diabetic,I was given prednisone for itp started at 100 mg am now at present weaned down to 5 mgs every day still have 3 months on this drug the devil created, moon face bloating, hair loss depresson, anxiety etc

I'm 33 years old. I'm starting to take Prednisone since 5 years ago. My side effects were :- moonface , weight gain , high blood pressure, skin rashes, dry skin , hair loss .....

God please help me to reduce the dosage ....

I was put on Prednisone to reduce an Orbital Tumor. I was on it for 3 months with varying doses. I was hopitalized and they had given it to me through an IV. Currently I've been off of it for 2 months. It worked, but not without lasting side effects. At first I had SEVERE night sweats, I'd wake up in the middle of the night to change my PJs, pillow & sheets. I gained about 15 lbs, I was mean & short-tempered, I had a short attention span, I lost muscle mass, I felt shakey and jittery, I used to sleep well at night and still to this day I have a hard time sleeping. My current problem is SEVERE hair loss due to this medicine. I'm going to see a Dermatologist tomorrow to see if there is any meds that can reverse this. Although I don't like these side effects, I think it helped me when ALL my doctors said I should have surgery, the Prednisone worked enough that I didn't have to. However, there is no guaruntee that it wont come back....then I'll be back on this life altering medicine.
Good Luck to everyone out there!!

I have been taking prednisone for a little more than 14 months for neurosarcoidosis: first round - 60mg for two weeks, 40mg for two weeks, 20mg for two weeks. Then I experienced a severe relapse. my doctor increase the dosage back to 60mg for about 2 months, then to 40mg for 2 months, then to 20mg for about 3 months, then reduced by 1mg a week to 10mg, then maintianed for three months. I am now taking 30mg every other day. I have experienced the following side effects: weight gain (30 pounds in 3 months, a size 6 to a size 14), abdomen swelling, right much hair loss, ugly mood swings, mild depression, increase urgency and frequency of urination, headaches, back pain in kidney area, sleep loss (at beginning and now at last dosage change), night sweats (at beginning), severe moon face, slight hearing loss, fatigue, and easy brusing. The weight gain slowed down once I reach the 20mg mark. I have reduced the abdomen swelling and reduced some of the weight. I still have a slight moon face. I believe out of all the side effects, the most hard to deal with has been the hair loss and the weight gain. These two areas are pretty important to a woman. Eventhough, this medication has subsided the symptoms from the illness, they have also caused some harsh responses. My family (husband and 8 yr old son) have also had to deal with the side effects. I wondered there got to be a better drug, with less side effects. And as of right now, we don't know the long term effects on other organs of the body, what other illnesses this drug could lead to. Please email back any responses.

I experience insomnia, fatigue, snoring due to increased neck fat, moon face, painful abdominal bloating, 10 lb weight gain, increasing blurred vision, purple rash on stomach, thin skin and easy brusing,hair loss, facial hair growth, night and day sweating. I started to decrease prednisone 2 1/2 mgs. per week alternate days in early December. Everything was going well and I could see slow improvement in my condition until mid February. Since then I have had more weakness in my hands, arms legs, and increased blurred vision. Since I may have to be on a low? dose of prednisone for a long time I have some questions.
1. How low a dose is necessary for side effects to diminish?
2. Does all your hair fall out to necessitate a wig? When does it start to grow back.
3. Does the weight go back to normal without dieting? Does your shape go back to pre prednisone?
4. Will the weakness, control, and pre prednisone vision come back to allow normal functioning?

I have been on prednisone taper for about five months, starting at 40 mg for six weeks, and then tapering to 30 mg for six weeks, 20 for six weeks, and I am now down to 15 mg for macrodantin induced pulmonary fibrosis. I have had weight gain, bloating moon face, muscle cramping, hair loss, and mood swings. I will be glad to get off this drug, although it has helped me a lot. I also have hypersensitivity pneumonitis, and it does not help much for that. I will just have to move out of the area because I am very allergic to something and cannot find out what it is. The water retention and the moof face are the hardest to take. I also have had back pain since being on this, and I don't know for sure this is a side effect or not. I have heard of others who have had this and when they stopped the prednisone, their back pain went away. I will let you know when I am off in April.

mood swings!! weight gain, weakness, appetite increase, headaches, hair loss and gain, tiredness