Guest guest Posted October 14, 2010 Report Share Posted October 14, 2010 I got it, along with the weight, and YES it did go away after I got off the Pred. but not the weight. I don't think anyone really notice at the time, but someone will look at a picture of me when I had it,and say, Is that you?? That's my story. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) Hi, Anyone else get moon face? How did you deal with it, did people notice right away? Where you able to get rid of it? KP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 I got it along with the weight as well. It was hard but it starts going away gradually as you reduce the dosage. Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 If you go to the group's website & click on photos, then the album Rose's World, the 4th picture shows me before, during & after Pred. The last photo in the album also shows my Pred face. As you can see by the other pictures, I did lose the moon face, although I've kept an extra chin or two. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Thu, 14 Oct 2010 21:01:10 +0000> Subject: Moon Face> > Hi,> > Anyone else get moon face? How did you deal with it, did people notice right away? Where you able to get rid of it?> > KP> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Yes, I had terrible moon face and was up to 240 at one time but I lost 70 pounds and I still have a double chin (as you can see from my photos with Rose), but it is much better than it used to be.To: Neurosarcoidosis Sent: Thu, October 14, 2010 4:01:10 PMSubject: Moon Face Hi, Anyone else get moon face? How did you deal with it, did people notice right away? Where you able to get rid of it? KP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 A big problem with the weight gain associated with Pred is that you not only gain weight, but there is a redistribution of fat to the middle of the body. Several of my doctors have said that this central fat is the most difficult to lose. This fat is also associated with cardiovascular disease, more than a fat butt or big thighs. When I lost a good part of my 90# Pred weight, my legs, arms & face started looking thinner pretty quickly, but I was never able to get back to my former waist size. There is actually a medical term for this body shape--cushingoid. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: katskreations1@...Date: Fri, 15 Oct 2010 07:21:56 -0400Subject: Re: Moon Face I got it along with the weight as well. It was hard but it starts going away gradually as you reduce the dosage. Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2010 Report Share Posted October 17, 2010 i have moon face really bad i have had enormous amounts of prednisone over the past almost 4 years and within the first 1 and a 1/2 i gained 100 pounds! any suggestions? To: Neurosarcoidosis Sent: Fri, October 15, 2010 3:51:59 PMSubject: Re: Moon Face Yes, I had terrible moon face and was up to 240 at one time but I lost 70 pounds and I still have a double chin (as you can see from my photos with Rose), but it is much better than it used to be. To: Neurosarcoidosis Sent: Thu, October 14, 2010 4:01:10 PMSubject: Moon Face Hi,Anyone else get moon face? How did you deal with it, did people notice right away? Where you able to get rid of it?KP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2010 Report Share Posted October 17, 2010 The main advice I've been given by my GP for combatting the weight gain on pred. is to exercise more, and feel hungry most of the time ... ie try to ignore the endless hungry signals, and just eat what your body really needs to keep going. And the usual stuff about low GI diet, low fat, low sugar healthy eating. It's a bugger, though, isn't it? Just what we need (NOT) to help us feel better about our health situation and ourselves. Cheers, .................................................................................\ ........................ http://sutherland-studios.com.au Dummies author : http://tinyurl.com/CodesandCryptograms http://tinyurl.com/WordSearches .................................................................................\ ........................ > > i have moon face really bad i have had enormous amounts of prednisone over the past almost 4 years and within the first 1 and a 1/2 i gained 100 pounds! > any suggestions? > > > To: Neurosarcoidosis > Sent: Fri, October 15, 2010 3:51:59 PM > Subject: Re: Moon Face > > > > Yes, I had terrible moon face and was up to 240 at one time but I lost 70 pounds and I still have a double chin (as you can see from my photos with Rose), but it is much better than it used to be. > > > To: Neurosarcoidosis > Sent: Thu, October 14, 2010 4:01:10 PM > Subject: Moon Face > > > Hi, > > Anyone else get moon face? How did you deal with it, did people notice right away? Where you able to get rid of it? > > KP > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2010 Report Share Posted October 17, 2010 Have your doctors tried adding other drugs in order to decrease the Pred dose? Methotrexate, Imuran, Plaquenil & Cellcept are commonly used as "steroid-sparing" agents. The process is adding one of these drugs, usually at the minimum dose, as the Pred is slowly tapered down. If necessary, the dose of the second drug is increased. The majority of folks are able to lower the Pred to a safer dose or stop it entirely. There are other options if these drugs don't work out. What dosage of Pred are you on currently? You will probably not lose the moon face until you are off the Pred or on a very low dose. Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) To: Neurosarcoidosis From: srccroft@...Date: Sun, 17 Oct 2010 09:31:05 -0700Subject: Re: Moon Face i have moon face really bad i have had enormous amounts of prednisone over the past almost 4 years and within the first 1 and a 1/2 i gained 100 pounds! any suggestions? To: Neurosarcoidosis Sent: Fri, October 15, 2010 3:51:59 PMSubject: Re: Moon Face Yes, I had terrible moon face and was up to 240 at one time but I lost 70 pounds and I still have a double chin (as you can see from my photos with Rose), but it is much better than it used to be. To: Neurosarcoidosis Sent: Thu, October 14, 2010 4:01:10 PMSubject: Moon Face Hi,Anyone else get moon face? How did you deal with it, did people notice right away? Where you able to get rid of it?KP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2010 Report Share Posted October 17, 2010 Hi, I was on 100mg a day for 5 weeks. Starting this pass Friday he has lowed me to 60 for a week and keeps going down - but not completely off until Dec. 16th - blah.. He does not want to add more meds as he doesn't think it is a good idea. He wants to see how this works. Truthfully, if I have to choose my eyesight and pred. or no eyesight and no pred. I will choose to loose my eyesight. A hard decision, but as long as I can stand any pain I will - I am not much of a med person, and am sad that I was on the high dose so long...hope I have not ill affects later because of it. KP > > > Have your doctors tried adding other drugs in order to decrease the Pred dose? Methotrexate, Imuran, Plaquenil & Cellcept are commonly used as " steroid-sparing " agents. The process is adding one of these drugs, usually at the minimum dose, as the Pred is slowly tapered down. If necessary, the dose of the second drug is increased. The majority of folks are able to lower the Pred to a safer dose or stop it entirely. There are other options if these drugs don't work out. What dosage of Pred are you on currently? You will probably not lose the moon face until you are off the Pred or on a very low dose. > > > Ramblin' Rose > Moderator > > > > It's not that life is so short-------It's that we wait so long to begin. > (attributed to Wooden, among others) > > > > > > > > To: Neurosarcoidosis > From: srccroft@... > Date: Sun, 17 Oct 2010 09:31:05 -0700 > Subject: Re: Moon Face > > > > > > > > > > > i have moon face really bad i have had enormous amounts of prednisone over the past almost 4 years and within the first 1 and a 1/2 i gained 100 pounds! > any suggestions? > > > > > > > To: Neurosarcoidosis > Sent: Fri, October 15, 2010 3:51:59 PM > Subject: Re: Moon Face > > > > > > Yes, I had terrible moon face and was up to 240 at one time but I lost 70 pounds and I still have a double chin (as you can see from my photos with Rose), but it is much better than it used to be. > > > > > > > To: Neurosarcoidosis > Sent: Thu, October 14, 2010 4:01:10 PM > Subject: Moon Face > > > > Hi, > > Anyone else get moon face? How did you deal with it, did people notice right away? Where you able to get rid of it? > > KP > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2010 Report Share Posted October 17, 2010 KP, Don't worry you'll be ok. 5 weeks is a long time but it shouldn't be long enough to cause long term effects. Of all the meds I've been on since being definitively diagnosed the prednisone is by far the worse. I've been on from 5-60mg for close to 4 years and it' hasn't caused any long term damage yet. This doesn't mean I want to stay on it forever, as soon as I find a combo that will let me get off of them, I'm gone. You have good people hear, listen to them. Mitch Moon Face > > > > Hi, > > Anyone else get moon face? How did you deal with it, did people notice right away? Where you able to get rid of it? > > KP > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2010 Report Share Posted October 17, 2010 KP, you shouldn't have to choose between your eyesight & long-term Pred. You definitely need a second opinion from another opthmalogist. Is this guy you are seeing an opthmalogist or an optician? Opticians are fine for routine eye care & glasses, but complications like ocular sarcoidosis require an experienced, knowledgeable opthmalogist. Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) > To: Neurosarcoidosis > Date: Sun, 17 Oct 2010 20:26:04 +0000> Subject: Re: Moon Face> > Hi,> > I was on 100mg a day for 5 weeks. Starting this pass Friday he has lowed me to 60 for a week and keeps going down - but not completely off until Dec. 16th - blah..> > He does not want to add more meds as he doesn't think it is a good idea. He wants to see how this works. Truthfully, if I have to choose my eyesight and pred. or no eyesight and no pred. I will choose to loose my eyesight. A hard decision, but as long as I can stand any pain I will - I am not much of a med person, and am sad that I was on the high dose so long...hope I have not ill affects later because of it.> > KP> > > >> > > > Have your doctors tried adding other drugs in order to decrease the Pred dose? Methotrexate, Imuran, Plaquenil & Cellcept are commonly used as "steroid-sparing" agents. The process is adding one of these drugs, usually at the minimum dose, as the Pred is slowly tapered down. If necessary, the dose of the second drug is increased. The majority of folks are able to lower the Pred to a safer dose or stop it entirely. There are other options if these drugs don't work out. What dosage of Pred are you on currently? You will probably not lose the moon face until you are off the Pred or on a very low dose.> > > > > > Ramblin' Rose> > Moderator> > > > > > > > It's not that life is so short-------It's that we wait so long to begin. > > (attributed to Wooden, among others) > > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > Date: Sun, 17 Oct 2010 09:31:05 -0700> > Subject: Re: Moon Face> > > > > > > > > > > > > > > > > > > > > > i have moon face really bad i have had enormous amounts of prednisone over the past almost 4 years and within the first 1 and a 1/2 i gained 100 pounds!> > any suggestions?> > > > > > > > > > > > > > To: Neurosarcoidosis > > Sent: Fri, October 15, 2010 3:51:59 PM> > Subject: Re: Moon Face> > > > > > > > > > > > Yes, I had terrible moon face and was up to 240 at one time but I lost 70 pounds and I still have a double chin (as you can see from my photos with Rose), but it is much better than it used to be.> > > > > > > > > > > > > > To: Neurosarcoidosis > > Sent: Thu, October 14, 2010 4:01:10 PM> > Subject: Moon Face> > > > > > > > Hi,> > > > Anyone else get moon face? How did you deal with it, did people notice right away? Where you able to get rid of it?> > > > KP> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
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