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Moon-face caused by Prednisone
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Avatar_f_tn
i am a 24 year old female. when i was 19 i got eyeritis (arthritis in the eye) in my right eye. it was a stubborn severe case and my eye was extremely swollen and red and i went legally blind in that eye and it all happened very suddenly. There are no eye specialists in my town so I had to fly to another city. When I saw the specialist he prescribed me 65 mg of prednisone with a taper plan of -5mg/week. I also took prednisone eyedrops among other eye drops and eye creams. Withtin days the pain and swelling in my eye subsided and I regained most of sight back. Prednisone saved my eyesight, so it definiteky IS worth taking.
I thought that my fight with eyeritis was over. However, once I finished my taper, the eyeritis flared up again. this kept happening to me. Every time I thought my eyeritis was finally gone for good, it would come back. The longest I seemed to be able to go without another eyeritis attack was a couple months. For about 2 1/2 years I was always stopping and starting my steroids again. Trying different taper plans, different amounts of eye drops, but no matter what, once I was off the steroids or sometimes still on them, but in small doses, it would return, even though I was still taking my eyedrops. I lost track of how many times I've had eyeritis now, but probably at least a dozen times. Some cases seemed to be more stubborn than others. Sometimes i needed to start at 75mg to make it disappear, sometimes only 60. with no eye specialists in my town, it was always a challenge to know the exact amount i should take, but eventually i got to know my eye n i could figure it out for myself how much steroids i needed better than any doctors in my town.
anyways, after 2 1/2 years the eyeritis finally went away for more than a couple months. I thought that this time, it really was the last time. (every time i got it, that's what i thought). well over a year went by with no flare ups, but just recently it came back again and this time I needed to start with 75mg.
for some reason my moon face is especially bad this time. I think every time i have to go back on steroids it gets worse. I have a double chin and my normally perfect skin has broken out in zits. it seems im getting a bit of facial hair. another thing that really bothers me about sterpoids is it makes my hair so thin! also the bloating and gas is very annoying. also i get much more emotional and sensitive. i get upset much easier and cry more. little things seem to frustrate me and its very easy to hurt my feelings. doctors say that i handle my steroids better than a lot of ppl though. I dont have uncontrollable fits of rage or lash out at ppl like some ppl do. (roid rage) also they say my face is not that puffy compared to some ppl, although i notice a big difference. When i went off my steroids for a little over a year, the moonface did go away but not completely. I still had a bit of a double chin which i never had before, and now that im back on steroids again it is much worse. so i think that moonface does go away, but dont count on it entirely and i think its different for every person and it also depends how much steroids you were on and how long you took them for.
as for weight gain, when i first went on steroids i was terrified of the unhealthy side effects especially the internal damage it does, so i made an effort to eat really healthy since the drugs were so hard on my body, i didnt want to toxify my body any more with bad food, and i actually lost about 30 lbs. at first i thought it was the drugs that was making me lose the weight b/c i was not even trying to lose weight, just be healthy. now i realize it was my good eating habits that did it. this time around i did not change my eating habits when i went back on pred and i have gai ned about 15lbs and i'm not even half done my taper. obviously i should be eating healthier and this weight gain would not be happening to me! its hard of course but worth it. cut out junk food and as much starches as possible. if you are on pred, you most likely have some time of inflammatory disease and starch is bad for all inflammatory diseases including arthritis, chron's, asthma, allergies, etc etc. in fact just by changing your eating habits, you may be able to speed up your taper process or drop your dosage because what you eat feeds your disease, and if you're eating unhealthy its probably making your disease worse, so you need more drugs than if you were eating right.
some more things about steroids: when i went off them off them, my hair slowly started to get thicker, but it is still nowhere near as thick as it used to be. in fact i think it used to be almost twice as thick. but dont despair because it does grow back, just really slowly, for me anyways. also when i went off steroids it didnt take long for my skin to clear up, so thats some good news. it probably took a couple weeks for my skin to get back to normal and a couple months for the bloating to go away completely but it did go away. also my mood went back to normal almost immediately after going off pred. i was not so emotional and uptight and i was very cheerful again.
something that wont go away is the cataract that i've developed from prolonged steroid use. once you get a cataract, it will continue to get worse until it requires surgery. however the surgery is apparently quite quick and easy.
I hope this helps some of you. basically, most of your side effects will go away after a couple months of getting off steroids, possibly sooner if you werent on them for long. the only side effect i stll had after a year was a little bit of double chin left and thin hair, but my hair takes a long time to grow. also i had lower bone density than before. MAKE SURE YOU GET A BONE DENSITY TEST IF YOU HAVE BEEN ON STEROIDS OVER A YEAR. luckily my bone density was not so low it was serious but im young and i had really stong bones to begin with, so if you are older or had more fragile bones to begin with you could be at high risk of developing osteoperosis.
this whole steroid experience has been a struggle for me but im so grateful for pred because i would be blind in my right eye if it werent for my steroids. the side effects suck, but it would be WAY worse to be blind and have excruciating pain, swelling, and redness in my eye. thanks to pred my eyesight has come back about 80% and my eye feels fine and looks normal again.
if you are depressed about your side effects just think about how much worse your life would be without your medication! the side effects are a small price to pay for the benefits that you get from pred.
thank you all for your comments on this site, i feel so much better knowing there are many others going through what im going through right now.
good luck with your health everybody and remeber to stay positive, eat well, and be thankful that we live in places where we have access to pred because if we were in 3rd world countries many of us would be dead or at least in lots of pain right now. bless u all!!!!
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Avatar_m_tn
Our daughter, Lauren, age 7 1/2 was recently diagnosed with autoimmune hepatitis with severe liver cirrhosis. In addition she has vasculitis, although which type is still yet to be determined. She began 40 mg of prednisone over three months ago and has been tapering off the prednisone (currently is on 5 mg). She also takes Imuran.  Her face swelling is quite excessive and the body swelling extreme as well. In addition she has facial hair and light acne.  It is awful and now she fell (a very small fall) and broke two bones in her arm! Does anyone else have a child with autoimmune hepatitis and sever liver damage that can talk with is. A transplant is imminent, however, right now the hardest part is the daily questions from her classmates and friends about how she looks.
Katy
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Avatar_m_tn
Have faith people--as you taper, the side effects, including moon face, will subside. Even though it is painful, and my heart aches for little Lauren, it is just temporary. Just one more challenge for us to overcome. I am now down to 5 mg/day (was at 120 mg/day at the outset), and I already see reduced side effects. I have been on for almost five months, did gain about 5 pounds, but weight also rebounding from transplant. About four days after going to 10 mg/day I saw reduction in chipmunk cheeks. Still not back to my usual face or chin, but certainly making progress. Progress is everything. To Joco619-you don't need to gain weight--it's all about calories in calories out, on or off prednisone it's the same calculation. You'll be fine, you won't be on long enough or at high enough dosages to worry about changes in your appearance. Just be vigilant about drinking enough water and making good choices regarding diet. And borealis87 is right--definitely keep on top of your bone health with calcium, vitamin D3, bone density tests and, if necessary, bisphosphonate therapy.
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2001586_tn?1327472150
oh my god ditto
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Avatar_m_tn
Hi, my daughter is also 7.5 years old and has been diagnosed with Wegener's Granulomatosis only 2 weeks ago.  She's on 40mg prednisone and already has significant face and body swelling.. She hasn't been able to return to school yet but am trying to prepare her for any comments she will probably receive.  This disease is also auto immune and can affect any organ but predominately the lungs and kidneys.  Poor little girls :(
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Avatar_m_tn
Hi, my daughter is also 7.5 years old and has been diagnosed with Wegener's Granulomatosis only 2 weeks ago.  She's on 40mg prednisone and already has face and body swelling.. She hasn't been able to return to school yet but am trying to prepare her for any comments she will probably receive.  This disease is also auto immune and can affect any organ but predominately the lungs and kidneys.  Poor little girls :(
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Avatar_f_tn
Hi Guys, I am 27 , I was diagnosed with Alopecia Areata 8 months before, it's a disease where u shed your hair on your head in a  very short time which doesn't give u pain but leaves a Mark on your looks , your self respect, it was a worse condition for me because I am an actor , and this disease hit me when I was at the peak of my career , i was doing a television series and by Gods grace I got my 1st movie , but suddenly in the middle of this I got this rare disease Alopecia Areata , in a span of 20 days I lost almost all my hair on head ! I was clueless as I had to face the camera , I then resorted to wigs and started with steroids I was doing fine with wigs but slowly my face bloated up, puffiness increased , every who saw after some days asked me what have u done to your face,i never knew it was because of steroids, I looked like a pig, I was the hero of my series but I looked like a bloated , swelled up man ! But slowly I got to know about the after effects of steroids ! I drastically reduced my diet, cut off fats and carbs, included proteins and fruits , and started lot of cardio exercises daily, I reduced my steroid intake to 60 mg a week ! I am doing better , moon face has reduced but it's not completely gone , but I am sure once I leave steroids and with all the hard work and self control , I will be winning over this disease ! If Lance ArmStrong with Level 3 cancer can win the biggest cycling tournament in the world,  this is just dealing with after effects ! Be hope ful and be positive ! God will give u much more he has taken from u !
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Avatar_n_tn
I have been on 5 mg. for 7 years and am now starting to get the moonface.
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Avatar_n_tn
I also have a rare disease called Eosinophilic Gastroenteritis.   I have been on prednisone for this for over 7 years.   I think I was dying before I started the prednisone.   I agree-----love,hate relationship.    Anyone else have this disease?
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Avatar_f_tn
Ugggh... I hate my face too! I'm bloated and I have a moonface because of my staroid. I'm only eleven and I get made fun of. I have chrons and small bowl disease and I wish I didn't. I guess I have to live with this. Chrons is we're you don't absorb any nutrition my body need so I'm tiny... Meaning 45 pounds for my age! When I got on the staroid I grew one inch and im 80 pounds. I went to a size 7 to size 10/12 in jeans. Every time I look at myself I want to cry. I used to be pritty but now I feel fat. I know it's not forever but I am on such a high dose. 15mL's  aday. At least I get to decrease my dosage in 5 months. Any advise? My loose clothes don't even work.
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Avatar_n_tn
Hi Shevlyn
I came across your comment as i myself was researching weight gain related issues while taking prednisone. I am so sorry to hear kids make fun. that's no good! I think alining yourself with people in similar circumstances such as in this post is a good move on your part.   I have to say I feel a-lot better reading everyone's feedback knowing side effects like my moonface will subside when i can ease up on the prednisone.   Im 37 and have Multiple Sclerosis and started on 200mg for the first week and am taking 80 mg a day for a month, then decreasing from there, to deal with a recent exacerbation i am having.  I am happy to say The prednisone is helping.  

My brother has crones disease as well.  In regards to your question on suggestions, me and my brother have both found out how important what we eat is. I know he has to be very careful what he eats, but the more Raw, whole, unprocessed  foods we eat,  the less the side effects from our disease effects us. One of the easiest and tastiest ways to do this is whole fruit, banana, berry's and veggie smoothies. you just need a decent blender.  there are tons of recipes online, but as long as i have a bit more fruite than veggies ratio, it comes out on the sweet side. you can use Agave as a natural sweetener.  (he ads protein, i ad spinach leaves,which is hard for him to digest)  we have both replaced 2 meals a day with these, and try to avoid processed foods altogether.   This is the single best thing that has really made a difference our day to day health.  and they are addicting.  my kids love em!  I hope that helps.  

-Matt
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Avatar_m_tn
Hi Fredee although your post was 2009 I have just been diagnosed with same illness as you and would really like to know if your treatment worked for you and if you are much better now.  Did you put on weight, have puffy face or other side effects and if so have they all subsided now
Northernbella
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Avatar_m_tn
Hi I stumbled accross your post while looking for answers about moon face for my young daughter.  I to  suffer from a serious auto immune dissorder.  I found something called the SCD diet that has changed my life and several of my friends lives as well. I was medication free after  just 6 weeks on the diet! Here is a website that is great. scdlifestyle.com  the resources section has links to lots of other great sites especially breakingthevicouscycle.com
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Avatar_m_tn
Hi Cindy, I have Churg-Strauss Syndrome, I lost the use of my legs and right hand.  I was on 80 mg of steroids out of the hospital.  Then methotrexate, but I decided to taper off the Prednisone and stopped the Methotrexate.  That was in 2007 and I am still Prednisone free.  I went to a Naturopathic Doctor, had to change my world and I am walking and so much better.  I don't always believe that drugs are the answer.
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Avatar_m_tn
Hi Rich. I was diagnosed in February 2012 with pemphigus vulgaris. I stated on 40mgs of prednisone which did not work. Went up to 60mgs. I have been coming down by 10mgs every three weeks and am currently at 40 mgs. I have a great amount of energy, feeling half my age. Have been working out at the gym 4-5 days a week. I have actually lost a few pounds, partly because until I was diagnosed and started the Prednisone, it was painful to eat. ( I only have the pemphigus in my mouth.) Just recently started to notice the moon face. Occasionally notice blurred vision at the computer. Just had my bone density checked, since I already have osteopenia in hips. No change seen there. Had my blood sugar checked also. No problem there. Someone mentioned eating bananas for potassium to help with foot cramps. I had started eating them when I first started on Presnidone but stopped because I was trying to eat less. Looks like I will need to add that back to my diet.

Since your post was some time ago, where do you stand with the pemphigus today? Are you off the Presnidone or still need a low dose? This is what I worry about.

Diane
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Avatar_f_tn
Right, You're not a doctor.
No one should be drinking while on medication.
That would be the safest advice.
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Avatar_f_tn
I have been on Prednisone for 11 weeks now.  Since then I have gained the 30 lbs I just lost.  I was diagnosed with FSGS (Kidney diease), and also Nephrotic syndrome. The docs said they have to treat the disease aggressively, so they put me on 60 mg of Pred. a day.  I have tremors, I have the moon face real bad, and also the apple shaped stomache.  It has also caused me to go into this depression.  I look like the dough boy.  What works for me is to exercise and to walk a lot.  There is no help for the moon face and the apple stomache.  I still have about 10 more weeks before they can cut down my dosage.  So this is my look for the summer.  I am also on a dioretic,, which helps keep some of the swelling down, but it does not help with the moon face.  One thing to watch for is your salt intake, and also sugar.  Cause it makes the swelling worse.  
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Avatar_f_tn
I was diagnosed with Auto Immune disease and Pulmonary Fibrosis 8 years ago. All doctors said I would die within 3 years, but I am still here and doing well. Was put on many medications including prednisone. 60 mg a day for a few years. Gained 80 pounds and have had very severe side effects, but with out it I will die so I deal with it. Some days better than others. They say you have a love/hate relationship with this drug and it is true!!
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Avatar_m_tn
Prob due to lack of a healthy diet and exercise. The drug makes you eat more, possibly unhealthy things( sounds like your case since the weight didnt go away) Try exercising and changing diet then give advice......
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Avatar_f_tn
I agree with your advice. I have been put on prednisone for a very low platelet count.  I would rather have my beautiful new look then bleed or bruise myself back into the hospital where I had the pleasure of spending 12 days on my butt bored to pieces. Carol
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Avatar_f_tn
hey everyone, I am 41 years old and I was diagnosed with Sarcoidosis in March and I was put on 60mg of pred a day for 3 months at the end of the 3 months is when I noticed my moon face, I am now on 40mg a day and hopefully in July I get to go down to 20mg. I have not gained any weight b/c I have been really watching what I eat and trying to stay active by riding my recumbent bike. I do hate the moon face, it makes me feel so ugly. i just want it to go away, I also have noticed that I get more tired now then I did before, but that's ok I just take more breaks during the day. I am glad to know that this will go away after I am off this drug.
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Avatar_m_tn
Hey, I'm sixteen and i just found out i have u colitis. Im on 50 mg of pred. and my face is already getting fat as hell. I went from having pretty much no acne to breaking out all over. I've gained ten pounds and it's only been three weeks. what should i do to solve this b.s.?
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Avatar_f_tn
Yup, have had all kinds of side effects.  Hair on the face, moon face, weight gain, stretch marks on tummy and upper, swollen feet and ankles, huge appetite until we decreased meds, high blood pressure, bumps on my hands, and skin tags are swarming.  Eeeesh I hate those things.  Allergies and arthritis went away so that was nice but they'll be back.  When I decreased my steroids I was very very tired because I'd started on 80 mg per day.  When I decreased again I broke out in a rash all over.  It wasn't too itchy tho and only lasted a few days.  I decreased again and now I'm getting twitches in my legs all night.  UGH.  Already depressed enough and now less sleep!  
Hopefully my face and neck will shrink quickly and I'll start losing weight again.  Had lost 15 lbs before all of this started.  Anyway, luckily I haven't had to be on the steroids that long for my poor kidneys.  I went from taking only 1 medication to taking 11.  Ack.  My budget is groaning.  The weight gain and moon face didn't stop me from going places though because I still have a life to live and friends and family want to see me so...But it's summer now and the extra swelling and weight make it very difficult to get around and do every day things.  Plus I have a hard time catching my breath.  I do feel lucky that the treatment is working and that I won't have to do this much longer.  Oh and I told everyone that would hold still long enough why my face and neck are so swollen.  I felt like sharing...no it's not cause I'm fat!  Lol  Anyway, hang in there.  One day at a time.
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Avatar_m_tn
I've been on prednisone for a while 3 years now for asthma but off and on.  does prednisone destroy neurons in your hippocampus and cause memory problems?
does it destroy your pancreas cells?  I read this on a forum.  I'm developing diabetes after being on prednisone and take metformin
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Avatar_f_tn
Hi Rich,
I was diagnosed with Pemphigus Vulgaris in Jan 2012. I had never heard of it. I also have moonface due to Prednisone. How are you doing now?
Please let me know.
Best Wishes
Marguerite
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Avatar_m_tn
I also have experience like you, I'm now in treatment of autoimmune hepatitis, and consuming prednisone. I don't gain weight although I eat much more than usual. My face now is getting rounder and chubbier, I feel bad for myself, I look uglyy :( so sad :( I hope my face will be back to normal soon.
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3128053_tn?1342392393
I have been on 7.5 mg Pred for 11 yrs. for Poly Myalgia. I have the Chipmonk face, buffalo hump & big belly.  Thanks for the steroids.  Doc never told me about these wonderful side effects.  I'm trying to wean off & stop. Can anyone tell me if the Moon face, etc. will ever go away?
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Avatar_f_tn
Hi, found this site looking for answers to Prednisone side effects.  I was diagnosed with SLE Lupus in January of 2012 and was put on 20 mg of Prednisone because of low blood platelets.  I had lost about 20 lbs I guess because of the Lupus but was happy with the weight loss. Anyway my RA upped my dose of Prednisone to 40 mgs then to 60 mgs with out telling me any side effects to look for and over the past 4 months I too developed hair loss on my scalp and break outs on my skin as well as moon face (which I call a bloated chipmunk), gained 20 lbs in a month, shaky hands, sleep loss, confusion, nails split and peel, facial hair and to boot it is not working to bring up my platelets.  My RA did not think any of these issues were note worthy although I feel worse than I did before I started any therapy.  He also added Imuran to the mix and now I sun burn in about 5 minutes and have light induced headaches (another story)
Bottom line, I am going to another RA and along with my oncologist's help I am tapering off the Prednisone and am down to 25 mg from the 60 mg and will keep on going as far as I can.  The side effects are horrible especially when there are no results that are helping so I hope that they will go away when I can wean on down but I am am also praying for a plan B to put my Lupus into some type of remission.  Good luck everyone and hang in there!
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Avatar_m_tn
Hi everyone, I'm 15 and was diagnosed just over 2 years ago with a rare auto-immune disease called 'microscopic polyangiitis' with crescentic nephritous and pulmonery haemorrage, which resulted in vasulitis. I was previously on 100mg of prednisone which caused me to develope a reasonably puffy face. But don't dispare! Most doctors won't keep a patient on a high dose like this for very long and as the dose starts to reduce, so will the swelling. Up until yesterday I was on a mear 1mg tablet daily, but after some bad news of a flare up again yesterday, I have been put back up to 25mg for two weeks, which will then begin decrease again after that. I am hoping that this relatively small dose for a small amount of time won't cause another bout of swelling. It's nice to read comments by other people who are in the same postition though, and I will let people know now that you are not on your own and it can only get better. The only way is up!
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Hi! I'm fourteen and was diagnosed with minimal change disease. (I should grow out of it by the end of puberty.) Right now they have me on steroids to get my kidneys working again. I was on 60 mgs a day and now they're starting to taper me off. I'm on 40 mgs every other day now. Soon I'll be 30, then 20, then 10. However, I still have the insanely large moon face and it's driving me nuts. I gained twenty pounds, too, just because I have a raging appetite. I don't even want to go in public like this. It *****. And because of the minimal change, I had originally gained 70 pounds of water weight. I lost it all in two weeks, then gained this ACTUAL weight back from steroids! School starts soon, too. Does all of this weight just come off? Do you really notice than much change in appetite? And how fast does this godforsaken moon face take to go away? Thanks!
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Avatar_f_tn
I have been on Prenisone on and off for 15 years. I have Lupus and a rare hereditary illness called Alpha one Anti Trypsin deficiency. There is no way around the side effects of the steroids, the moonface, excessive hunger, and weight gain are just the most obvious. Right now I am on 60 mg. and have been for 5 days, after two more days I'll go down to 40 for a week and so on until I taper off. I had to restart after only being off for week. The moonface is starting and I have gained 60 pounds in the last 2 years. This happened before and I do have some good news, although it took a year of steroid free living and eating right I lost all my weight and Next week I start chemotherapy to hopefully get the Lupus in remission. Even though the side effects are bad it sure beats the alternative. It's hard sometimes to look in the mirror but but  have to remind myself that it's only temporary and my self worth is not only based on what I look like. Hold your head high and others will look up to see you! Good luck all! God Bless!
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Avatar_m_tn
I am now experiencing the moon face. I was given a steroid treatment for my sciatica. It didn't help the sciatica, in fact, it made it worse. Doctors say there are no other alternatives as it is not surgically treatable and I reject narcotics and steriods. If anyone has answers about getting my normal face back or for that matter..sciatica treatments, please let me know. I am always in pain and need a cure.
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Avatar_f_tn
I have been on and off Prednisone for 5 years now. I have an extremely rare eye condition called "VKH" it causes retinal detachment of the back of the eye and can cause blindness if not controlled by Prednisone. Anyhow, this drug has had me on quite the roller coaster. I have had every emotion, and there are times I have been suicidal. Although it has saved my vision it has made other parts of my life miserable. I was on prednisone while pregnant with twins and that was horrible!! I have had the thinning of the skin, moonface, buffalo hump, rages, and of course the weight gain. Every time I get tapered down and taken off my condition returns. I can't seem to get this weight off. Once I get off the meds and start to lose weight, I get put back on. This drug has helped and ruined my life all at the same time. I wish sometimes I could just never leave my house cause I am so depressed. When I do leave my house I feel like wearing a sign stating, "yes, I take prednsione!" I have never been a vain person really but when it effects your body as much as it does it is very depressing. I only hope I can get tapered off this drug sometime soon so I can resume my
Ire and be happy again. Be well everyone!!!
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Karina
I also have AH and would appreciate if you would share your course of
treatment, how long you have had it, side effects etc.
Thank you so much
Beverley
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Avatar_f_tn
Hi I was dx with UC 2 weeks ago...they put me on predizone and it messed up my eyes...then he took me off of it and put me on lialda which my insurance does not pay for lucky I got samples cuz it made me sicker then a dog OMG....I am 59 and my grandmother died of colon cancer.when I was in hospital they did biopsies no C yet..but he said it will turn into it with a few years...I had so many plans for the 30 years since my father is 90 thought i would too....monday they are starting me on new drug aka cancer drug <they use for treating the inflam and the bleeding...I think I am going to tell my dr these meds are making me so sick that I want atleast 1 week off before I start a new one...
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Avatar_m_tn
Thanks- kinnda in the dumps this morning and needed to hear your encouragement. God bless
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Avatar_m_tn
this was truly helpful. thanks so much for your detailed assessment. you made me feel as if there is someone who truly understands how dramatically this drug impacts your life. I have been on prednisone off and on for more than twenty years. it has saved my life even though I would never have imagined I could become so ugly! to the point now that I don't want to go out especially if I might see people who knew me when I was extremely attractive. I hate the looks of "what happened to you?!!?" anyway what can you do except thank God that you're still alive and try to have an attitude of gratitude and humility.
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Avatar_m_tn
i was diagnosed last year with uc but my flares have been more and more frequent lately. i am considering surgery but my GI would like to explore pred. first. wondering if you have noticed any improvement to your symptoms? I am really nervous about using steroids and would like to avoid them at all costs
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5457341_tn?1368275176
Hey everyone, I am 20 years old and suffer with rheumatoid arthritis, quite severely :( and I can only describe it as life changing, it came on so suddenly and pretty much ruins everything... I am currently on 28 tablets a day, sometimes more if I am having a bad day. I always feel so down and depressed it's so hard because no one understands, they can't see the pain I am in because my leg isn't hanging off or I haven't got wounds exposed all over my body. There are mornings I would wake up and it feels like the bones in my legs have been crushed into tiny pieces and someone is trying to lift them. I can't describe how sore it is... the only thing i can do is tighten my fists as much as I can and scream it out. Sometimes I have to hit the wall behind me to try spread pain somewhere else (probably not the best idea in the world... but it helps :) ..but then the next day I could be absolutely fine, it is so unpredictable. Before I was diagnosed with this disease I did a lot of modeling and was so confident and happy with how I looked. I loved exercising and worked my *** off which always kept me very thin. Then Prednisone came along :( I would do anything to get off these horrible things! :( My Rheumatologist has me on 60mg (12) a day for the last 3 months. Every definition on my face has been filled... I hate it so much, I look terrible :( I don't even have a chin anymore it is just round. It actually hurts it has swollen that much. I have light blonde hairs growing on my cheeks!! and my this weird baby hair on my forehead. I haven't had a proper nights sleep in months my heart is constantly racing and I would wake up with sweat running from every pore on my body. Why do I have to suffer on the outside as well as on the inside. I have done nothing wrong all my life to deserve this and it feels like everything has just been taken from me :( I am craving so much food and put on loads of weight but trying so hard to eat as little as possible. I have been so down all the time and I guess that doesn't exactly help my condition either. It is only now 6 months on that I am actually starting to accept the fact I have this.. okay it is s**t and I would do anything in my power to make it stop. Lying around all day and feeling sorry for myself is not going to take it away or make me feel any better mentally. Okay I have my bad days.. but everyday is a new day and I take everything one step at a time. If i wake up and feeling okay I make sure I take full advantage of my day ahead... flare free! ...I wake up and I feel like I just want to die .. then I dose myself with tramadol and try to sleep it off as much as possible. I have been blessed with a beautiful boyfriend who has helped me through so much. There are days where I would tell myself, he doesn't have to suffer along with a girlfriend who has arthritis, along with constant tears and moaning about her appearance, but chooses to stand by my side and still tells me that I am the most beautiful girl he has ever seen. He is what keeps me going and I honestly don't know how I would have managed without him. I look forward to the day they start to reduce my steroids and I eventually get my face back, but until then I am trying to stay as positive as possible and take everyday as a new day.It could be worse, without these steroids I could be flaring up a lot more. So I guess for that reason i am thankful they are helping. Thanks for reading x
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Avatar_m_tn
Hello,

I am getting a biopsy soon to check for sarcoidosis.  I have the neurological end of it though.  It caused me to get transverse myelitis, which is spinal inflammation.  I have been on 60mg of prednisone since April.  I am hoping to taper soon.  I was doing some research and found that Imuran can treat sarcoidosis.  Do you know anything about this drug?  I really want to get off the 'roids. The moon face thing is killing me!!!
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Avatar_m_tn
Mindy006 - my cat actually had this disease. He was on pred. too for awhile, then we managed it with nutrition.  Maybe a holisitic nutritionist could help you so you wouldn't have to take so much prednisone.
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Avatar_f_tn
I have been OFF prednisone for 7 weeks. For RA I started on only 5 mg for 2 months then switched to 10 mg every other day for the next month, because it wasnt working. Tapered off correctly for the last 2 weeks. At 7 weeks prednisone free I still have Anxiety, Heart Racing, Insomia, Blurred Vision, Brain Fog, Moon Face, memory loss and a constant ear ringing. Although they are not as bad (these were pretty severe) as the first 2 weeks of my taper, they are all still present and very annoying. I do Not feel 100%, I may be near 65%. I expected more at 7 weeks free. My face still really bugs me, I have puffy Jawls and around my jaw line,  my eyes are still swollen, but not as bad. I used to look like Shrek/Pig, now I just look odd i guess, I dont get the weird stares anymore so I know its better, but some do look at me funny so I guess its still noticeable. I cant tell, others can, but i do know I still don't have my normal appearance yet, hopefully it comes back. The texture of my face skin is not normal, I have lots of pores and loose skin. I feel mostly irritable with horrible mood swings. Always tired, my eyes are very dry. I'm very Impatient. Easily depressed if I think about my appearance. Always anxious. Still hoping I can get my 100% back soon, gonna give it another month or 2, the length of time I was on prednisone, if things dont change then I will have to learn how to accept the new look I guess. Still read these post for hope...thanks all..
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hi mindy006. I was diagnosed with Eosinophilic Gastroenteritis and about 6 years ago so when I read your post I was so surprised bc our condition is very rare and I havent met anyone until now. It took almost a year before I was diagnosed and another of trial and error with prednisone, MP6 and other meds. 6 years later and I am at 10 mg daily;however , about 5 months ago some of my symptoms have returned. Diet is so key and when i wander off, my body quickly reacts but now one of my symptoms is worse..burning itchiness all over and heartburn My dr. added 2 new meds now.  Please tell me about your condition?? Its been a frustrating painful journey..a support system is so key. My husband has been very supportive with the changes I've had to make for myself and my family (foodwise). I hope your condition is under control..whatever I can help you with just reach out..be well
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Hello fellow pemphigus warriors! Gads...isn't life just full of surprises? I have never in my life been sick - don't even take aspirins - and then, in Feb of 2013, became polkadotted. Nothing serious, and the doctor just thought it was a viral rash. I moved to a cooler climate, and the polkadots became less pronounced. But by summer, they were back again, and became bumps that didn't like to wear seatbelts (or undergarments, or anything that would rub them). And I got the mouth sores and lesions in my scalp/hair falling out from the roots, too. Three doctors later, in late August I was diagnosed with pemphigus. Initially was placed on 100 mgs of prednisone. Then added 175 mgs of azathioprine.

This seems to have worked well as far as the pemphigus attack. And yeah, I got most of the side effects/symptoms mentioned by others here. I manage those, but my worst problem has been isolation. Man friend could not handle this disease nor my prednisone mood swings, so he's gone. No family members who are stuck with me. I have one 'best friend' who has dumped me entirely, another who due to her government job/economic situation is moving across the country, and a third who is going through a major depression of her own. I have zero moral support. Because of where I am, the type of work I do (law enforcement), and the severity of my pemphigus, initially my doctor ordered me to avoid public contact/contact with communicable diseases. So I spent a couple of months talking to inanimate objects and watching a lot of court television. Yikes!

One thing that nobody seems to want to address are the socioeconomic ramifications and side effects of such diseases and the treatments. Holy moley...I do NOT want to go on Disability...but may have to. I currently have my house on the market for sale. No idea where I will go if I sell it, but it will be someplace that is low maintenance/easy care/no stairs to fall down on. I am now down to 5 mgs of prednisone, but I still have the moonface, and the prednisone gut...and the backache that accompanies. No way can I move well enough to do my job or most work that involves a great deal of physicality/coordination. Fortunately, I did not get the werewolf look (though I can grow a few whiskers), but none of my clothes fit and I cannot get my feet into any shoes besides clogs. I have been on FMLA type leave from work, but that time is up and I am now have a no income/no insurance type situation looming large.

So far I've handled it. I laugh at my moonface, and yak with a few people on the Internet for society. But a support group (even a cyber-support group) sure would be helpful. I know that each of us is different as far as our physiologies and how to manage our disease and treatment...but we can all still use some moral support, right?
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Avatar_m_tn
Hi yureeka, I got a positive PV diagnosis recently also and yeah wow, having a support network is very important.  My wife really came through for me and friends I didn't even know I had came out of the woodworks.  Workplace has been understanding also.  That ***** that your BF jumped ship but hey now you know what he's made of so its all for the best.  Hang in there, the drugs work.  Stuck at home I've finally gotten control of my life in a practical and spiritual way.  I'd try to get out of the house a lot, go on hikes and nature and such; dense crowds are threat ofc but not going crazy is an important goal also right?!  Anyways I'm no professional, just saw your message and wanted to show some support and a smile :)
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Avatar_m_tn
oh hey also theres a facebook group for PV, pretty active group by the looks of it.
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Hi redhead1976, I too have been diagnosed with Polymyalgia Rheumatica and have been on Prednisone 15mg for 9 weeks, have now come down to 12.5mg and reading these posts am grateful I was only on the low dose but yep have all the same side effects as well... been reading quite a lot and it seems the side effects do go after time when you come off.  Sister suffers from Colitis and is often on Pred and her moon face comes and goes with the tablets so hopeful that this will happen to me !! I see you have been on them for 11 years, your Poly must have been very painful.  I'm trying to be positive about all this, Kids and husband been very supportive, but you know in your head its not how you want to look!! One question, are you getting flushing and sweats with the tablets?? i'm experiencing terrible sweats but not sure if its the menopause or not !! hope your condition gets better and as with us all on here, hope the side effects go too !!!
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Avatar_m_tn
Just like to ask is anyone have flushing and sweats on Prednisone ??? mine are terrible ?? thanks
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Avatar_f_tn
i just came across your post, i realize it is from some time ago but was intrigued and also wondering how your doing? Also what immune disease do you have? I have Ant-gbm which has caused kidney disease and am currently looking for alternative holistic approaches to health. Are you still on this diet?
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