Moon-face caused by Prednisone

[JTD]

Hi,
I have been diagnosed with Rheumatoid Arthritis. I am 25 & am on Prednisone(60mg),salasapyrin(500mg)& Plaquenil(200mg) per day. I have developed a large moon shaped face. I am swollen in the face & neck & hate what it is doing to my face. Will this swelling & fluid go away when I come off the steroids in five weeks? It is causing me to be depressed & family have noticed the change in my face & are worried for my health. I have heard some scary things about these drugs, prednisone in particular. Please is there anything that can stop the Moon face & would I benefit from taking a dieretic too?? P.s I have had an eye twitch every day for the last 3 dys in my left eye, lasting for approx 20secs & about every 10 mins? Could this b another side effect & should I worry about it as it is annoying & starting to get sore?
Thanks

[mrrgl]

oh hey also theres a facebook group for PV, pretty active group by the looks of it.

[mrrgl]

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 :)

[yureeka]

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?

[dorangil]

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

[cindy173]

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..

[mamaB78]

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.