Meet Krystle:
I am 24 year old and was originally diagnosed in October 2009. I was in remission for 3 years until October 2012 when symptoms appeared again.
Some more about me:
I live in Michigan and am employed as an auditor. I am currently in the hobby of planning a wedding for May 2013.
Current Symptoms and Side effects:
Cramping, blood in stool.
Prednisone side effects – moon face, facial hair growth, anxiety, mood swings.
I Don’t Want Moon Face on My Wedding
When first diagnosed in 2009, after 1 dosage of prednisone starting at 40mg, I felt fine and had no symptoms for 3 years. The most recent diagnosis came after both my ankles swelled so big that I had to use crutches on top of the frequent trips to the bathroom with loose stool. I was out of work for 1 week. I was so weak and sick that the doctor prescribed me with Lialda and Prednisone (40mg). I recently tapered off Prednisone and was off for 1 day before the cramping and blood returned and my trips to the bathroom increased from 1 to 6. My doctor wants to put me back on Prednisone at 40mg. Unfortunately, I don’t want to do this due to all the horrible side effects I had from the first round. Since I could not survive without the Prednisone, I took 20mg for a few days and have just upped it to 30mg.
My question is how can I get off this drug fast!
I am trying to plan a wedding which is in 5 months and am getting very depressed at the thought of being a hairy moon-faced bride. My fiance is super supportive and said he loves me no matter how fat or hairy my face may get, but my own self-image is making me depressed. I am afraid that even if it takes 2 or 3 months to taper off Prednisone, the moon face won’t go away in time and this is not something I want documented in expensive photos for the rest of my life.
The doctor has also given me options of 6mp and Remicade which I am debating. The problem is that she said 6mp takes 3 months to start working and I have to be off Prednisone for 3 weeks before taking a TB test to ensure I qualify for Remicade. Since I couldn’t even stay off Prednisone for 1 day, I am weary how this will happen. Does anyone have any advice for getting off this Prednisone as fast as possible!
Prednisone and other medications I’m Using
Prednisone – second round. Starting at 30mg (doctor wants 40mg) and tapering 5mg every 2 weeks.
3 Lialda a day.
Currently trying probiotics
written by Krystle
I am 24 year old and was originally diagnosed in October 2009. I was in remission for 3 years until October 2012 when symptoms appeared again.
Prednisone is for a beast, and the side effects are the worst, but it does do work for immflamation. I have been on prednisone since august and had a wonderful rounded puffy face for my good buddies wedding that I was in this past month. I am now down to 5 mg and am going off 1 mg per week and others have noticed a significant difference in my face, still a little mooney but not nearly what it was. I think if you can get down to 5 mg within a month of your wedding you should see significant decrease in moonface.
I am currently on Remicade infusions and the hope is that once I get off steroids which should happen in the next 3 weeks barring any symptoms flare ups that Remicade will be the only medication that I take besides daily vitamins and probiotics. I was hesitant of Remicade when I first started but I have only seen positive results thus far and I am now going on my 4th infusion.
I hope things work out for you. Keep me updated on your progress.
Be Blessed
Kyle
You can start weaning yourself when you want to but you MUST wean yourself gradually. I got sick of the side effects of prednesone the last time I was on it and did not understand how powerful this drug is. I tried to wean myself very fast and I had the occurrence of falling over and having everything go black. I it took a few minutes for my vision to come back and I could not tell which way was up. I lost total orientation. I made it to my bed with my wife’s help and immediately put myself back on my old dose and in a couple of hours I was fine. My wife wanted to call an ambulance but I knew then what it was. I did some research and found you can permanently damage your adrenal gland from weaning too fast. That worried me. But it was over a year ago and I do not have any of the symptoms of adrenal gland damage thank God.
Gary
I also went back to the doc for a slow weaning prescription. You can get the pills in a lower mg dose and I was even cutting pills into quarters. I made up a chart to wean myself over a long time.
Lots and lots of probiotics’ we use VSL here and u can get others. But for UC folks- high dosing is usually needed- why I like the VSL. It amazes me that docs don’t advise these more!!! And re the moon face- of it happens- so be it- u have a wonderful person u r getting married to- u r blessed!
Kathy- wife to UC dude and mom to girl with gut issues
you can get a tb test while you’re on prednisone. i don’t know why your doctor said you can’t- i know tons of people who have had that done. when i was on 40 mg prednisone, i also started on 6mp and remicade and they did a tb test no problem.
unfortunately, my pred side effects were much more severe and mine lasted a while. like 2 months after i was off prednisone, i still had moon face and still live with the rest of the problems a year later. i honestly don’t think there is anything you can do to get off it faster unless you want to get worse. it seems like prednisone isn’t even helping you anyway (never helped me at all). i would definitely try 6mp. it helped me after a day of being on it- not remission, but it helped. i still went on remicade and that’s what made the most difference.
Hi I’m struggling to get of pred too, but found my moon face went down at 10-8 mg just had to go back to 10 before Christmas but started pentasa at same time and the moon face hasn’t returned :-) I was advised reduce salt to a minimum and drink loads of water… Don’t know if its helped or not. I have had the blood work done whilst on pred as they are discussing 6mp if pentasa doesn’t do the trick. My docs advise a much slower taper this time. 1mg every 10 days and if sliding to try for example 8,8,8, 7,8,8,7,7,8,7,7,7 etc and give my body chance to adjust! I know it’s slow but if you go too fast it’s back up to the higher doses :-/
All the best and I’m sure you’ll get there looking stunning x
I was a hairy moon face bridesmaid for my sister in September so I went to the beautician had it all waxed and a done clever make up made a huge difference xxx
Thanks for the support!
Has anyone experienced really weird anxiety due to the prednisone? I feel like I am always on edge and worried about everything. My heart feels like it is always racing and I now get really embarrassed for no reason at all which in turns makes me more self-conscious. Any insight would be appreciated!
I have had my first ever experience of panic attacks and general anxiety on pred. My docs were reluctant to prescribe a drug for a drug iykwim- so they def attribute it to pred. I try to practice breathing exercises and meditate at bedtime. You aren’t alone x
I was right where you are at not to long ago. You can go on Remicade to get rid of it fast, it didn’t have side affects for me really at all until it quit working. If its really bad then you will be forced to go onto remicade anyway. It takes about 3 months for the full effects of prednisone to go away (just a little thing I calculated). I did a very dumb thing because I had a wedding for me too. I was already on remicade and was in a full flare (because my body built antibodies to it) So i didn’t take the prednisone when he wanted me to because I didn’t want a moon face for my wedding. I got very anemic and almost passed out a couple times. But I know you know all that but still probably will refuse like I did. So if your bleeding is REALLY bad then you should talk to your doctor about remicade.
I was on prednisone for 2 months in 2010 (for the first and last time), I started at 60mg per day for 1 week, 55mg per day for the next and so on, weaning by 5mg each week. This was what the hospital told me to do but looking back I think this was too quick to wean, especially towards the end. Now over two years later I still feel/look tired all the time and haven’t felt like myself. I put this down to the effect of my big flare in 2010 but my colitis hasn’t been too bad over the last couple of years and it got me wondering. I am beginning to think my adrenal glands aren’t working properly due to the steroids/stress of illness and wondered if anyone else has any experience of this. I found a product online called isocort that gives you some natural cortisol daily to help give you a boost to allow your adrenal glands to rest and heal, but my worry is this will suppress my adrenal glands more and make things worse. I’ve been trying siberian ginseng which seems to help with the tiredness, I think I’ll just stick with this for now but I will definitely discuss it at my next hospital appt (May.)
I will be starting on 6mp tomorrow and am starting to decrease my dose of prednisone. Starting to feel more optimistic every day!
good luck!! i hope the 6mp helps you.
to answer your question about prednisone causing anxiety, i was ALWAYS anxious on that drug. i was shaky and on edge all the time… kind of like how i would imagine recreational drug withdrawl would be, accept you’re withdrawling from prednisone. i remember i was so shaky that i couldn’t put my contacts in during my entire pred course.
I am mostly worried that even after I get off prednisone, all the anxiety it made me feel for so long with just stick with me forever!
Hi Kristie,
Don’t worry! It won’t stay! I was on 20 mg of prednisone everyday for 3 years straight and no anxious feeling when I was 14. I’m 24 now. It took me about a year to loose the weight (I wasn’t actively trying to lose weight). Legitimate moon face only stays after long term prednisone use (years). That was prednisone’s gift to me as well with what they call a steroid induced camel hump (bump behind your neck…it isn’t huge just looks like you’re hunching your shoulders all the time). So as long as you are on and off prednisone you shouldn’t have this problem.
And try to look at it in a positive light. When I was on prednisone I looked at my face and the extra weight I saw it as a good thing! I always associated it with me getting better! Which is the most important thing!
Congrats on your wedding and best of luck!
Angela
Hi Krystie,
I hope things are better for you now! I also live in Michigan and am getting married this summer (July). I just started prednisone yesterday (after all else failed) and share your same worries and concerns for the big day. Although your health is the number 1 priority, everyone wants to look and feel their best on the big day! You are definitely not alone. Were you able to taper off the steroids yet? I’m hoping to taper off after 30 days, but am worried about the side effects. So far, I’ve had insomnia. I will see what other fun side effects await me. I bet your makeup artist can do great work to minmize any prednisone facial effects. I have decided that if I look awful in my pics, I may book a photo session after to get some good pics of myself and my husband.
Wishing you good health and a wonderful wedding!
Jessica
Krystle,
Hang in there! I am sure your future husband thinks your are the most beautiful thing he has ever seen no matter what. Things will change and you will get back to normal. Try and focus on the good things that are coming and block out the bad.
-Tyler
I’m just seeing your post. I hope you had a great wedding! I was diagnosed with Crohn’s Disease in 1994, but had symptoms since 1980. My gastroenterologist never put my on prednisone. Before the biopsy diagnosis, I had a “nervous stomach”. I was put on Librax, which really helped. When bleeding started, they added Asacol, also a life saver. Probiotics help too. UC and Crohn’s are similar and are treated in the same way. Both are chronic conditions and never go away, just go into remission. I hope you have a good gastroenterologist who will put you on the right medication.
I have had Sarcoidosis for at least 8 years. It presented with lung granulomas, enlarged lymph glands, Bell’s Palsy and hard growths under the skin of both forearms. The palsy lasted a couple of weeks and the skin lumps about a year. When I was given Prednisone it was in high doses with a quick weaning off period. So other than feeling hyper and getting cranky, I was fine.
Over a month ago the Sarcoidosis caused me to develop Lupus Pernio, which is deforming my nose and entering my sinuses. Went on a daily dose of 20 mgs of Prednisone. The side effects were horrible. Moon Face, swollen ankles and hands, insomnia, mood swings, weakened legs, constipation and on and on. My Prednisone was dropped to 5mgs last week. My doctor prescribed Remicade and I had my first treatment last week. With the exception of headaches, I didn’t experience any side effects. My moon face has dropped in size and I’m no longer retaining water. Also my moods have evened out.
If you can go on Remicade do it!
I have just begun Remicade but my dr ordered a corticosteroid given prior to Remicade all in same infusion, first hour was the steroid then Remicade. Asked nurse about it and was told it lessened the Remicade side effects, told me it’s not prednisone but is a corticosteroid, low dose. Does anyone know about this and if it will cause the same effects as prednisone?