Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 Dear Group, The following is an interesting web page that relates Prednisone to weight gain: http://vasculitis.med.jhu.edu/treatments/prednisone.html The bottom line is that Prednisone is a steroid, which tends to put on weight. " Weight gain is usually the most dreaded side effects of steroid use, incurred to some degree by nearly all patients who take them. The amount of weight gain varies from individual to individual. In addition to causing weight gain, prednisone leads to a redistribution of body fat to places that are undesirable, particularly the face, back of the neck, and abdomen. " Regards, Harald >In a message dated 2/21/03 7:14:56 AM, melinda159@... writes: >Did you mean to write: I have gained some weight on prednisone although I >am eating less. I am no[w] getting off the pred. Will some of the weight >go away? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2003 Report Share Posted February 23, 2003 Dear , Fantastic! Now can they lower it gradually? Re: [ ] prednisone Cheryl, I have said many, many prayers of thanksgiving that my liver seemed to respond so well to only 20 mg of prednisone daily! I truly feel I am one of the lucky ones! W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2003 Report Share Posted February 23, 2003 , Yes - we've already started lowering my prednisone. I went down to 17.5 mg a day (from 20 mg) on Saturday. I will lower the dose 2.5 mg a day every two weeks until I get it down to 10 mg a day in April. I'm thankful to be able to begin lowering it so soon. Even though I've been lucky not have any really bad side effects, it is causing problems with my blood sugar, it makes me nauseated, and I've got that stupid metallic taste in the back of my throat again! So, every single mg drop in the prednisone is a blessing as far as I'm concerned! W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2003 Report Share Posted February 23, 2003 Hi , When they lowered mine from 30 then to 20 then to 17.5 then 15, I was OK. But when I went from 10 to 5, I was cranky and tired. I missed all the energy I had while on 20. 30 had me wired all night, didn’t like that at all because I couldn’t do my job properly because I was so fuzzy. But I think if I didn’t know, I wouldn’t have been looking for the side effects so much. Hope everything goes well as they lower yours! I gained 25 pounds but I needed it as I lost weight and looked like a skeleton. Now I am at my normal weight for the first time, not underweight anymore. Re: [ ] prednisone , Yes - we've already started lowering my prednisone. I went down to 17.5 mg a day (from 20 mg) on Saturday. I will lower the dose 2.5 mg a day every two weeks until I get it down to 10 mg a day in April. I'm thankful to be able to begin lowering it so soon. Even though I've been lucky not have any really bad side effects, it is causing problems with my blood sugar, it makes me nauseated, and I've got that stupid metallic taste in the back of my throat again! So, every single mg drop in the prednisone is a blessing as far as I'm concerned! W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2003 Report Share Posted June 18, 2003 I received a letter from my doctor, he says he wants to put me on MTX and or Embrel/Remicade... After Prednisone.. humm side-effects... argggg shitty PA Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2003 Report Share Posted June 18, 2003 In a message dated 6/18/2003 2:10:33 PM Pacific Daylight Time, SurfcityCL@... writes: > I have also heard that hydrocortisone > has less side effects. The doctors I have been to are just not > knowledgeable > enough on the subject. Does anyone know of a book on the subject. I saw > one > on the net called " Coping with Prednisone " , but don't know if it is a good > one. Hi Carol, I dont have answers for you on this as usually I was given steroids while in the hospital, and remember being very dizzy when coming off of them. I just wanted to say to you Kudos to you, Congratulations for educating your self on the medications you are putting in your body, and making choices based upon your own research. ((((*))))) Ann Pritchard " Deep in the center of our beings is an infinite wealth of love " <A HREF= " http://www.rheumatic.org/medhist.htm " >http://www.rheumatic.org/medhist.htm\ </A> < latest published work. <A HREF= " http://groups.msn.com/TyroMedia/pictures " >http://groups.msn.com/TyroMedia/\ pictures</A> < latest photos <A HREF= " http://melungeon_music.tripod.com/melungeonmusic/ " >Melungeon Music</A> < 's Web Site Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2003 Report Share Posted June 19, 2003 I read the book Coping with Prednisone - it was a long time ago, but it did help me to understand the side effects, etc. and help me cope with taking that awful drug. I am happy to say that with AP I was able to get off prednisone for good and I am in remission from my dermatomyositis! Good luck Carol! Liesl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2003 Report Share Posted June 20, 2003 Prednisone is used to get the short term pain down. Try 10 mgs a day. After 4 weeks go for the biologic. I am not a great advocate of MTX (Mustard Gas) and believe this patient group should be doing more to lobby the decision makers to increase access for patients. br -rob [Ed. Note: MUSTARD GAS!? Are you just being flippant Rob, or is that for real? If so, it sounds like there's a great story there. Please fill us in on as much as you know about the connection between Methotrexate and Mustard Gas. Do you have any Internet links, etc., for further information? Thanks, Ron] > Teneglio <jean_teneglio@...> wrote: > I received a letter from my doctor, he says he wants to put > me on MTX and or Embrel/Remicade... After Prednisone.. > humm side-effects... > Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 I went off the prednisone over a six month period of time and had little problem. However, I had to stop the IV's because of health insurance issues. This created numerous med problems and eventually I was able to get a good pain management program going which included 5 mg prednisone. The VA doctors (who experiment perpetually) were adamant that prednisone would not help. Eventually after I complained that I was more functional when I was on the prednisone, they gave in and said they would try it. What was interesting to me was the numerous reports and studies they quoted to the head Rheumatologist that anything under 10 mg had shown no adverse effect on adrenal or other functions even over the long term. He had been not allowing it because he knew I was on the AP and he wanted me to be on methotrexate. The interns listened to me and read what I gave them and after eight months of being virtually non-functional and showing him the reports he caved. Three months later was my last app't at the VA and that was two years ago. I continue to improve (I have since also resumed IV's weekly) and stay on 5 mg prednisone. The reason I responded was to primarily highlight the SLOW tapering of prednisone.I changed from 5 mg tablets to 1 mg tablets. Then, 1/2 at a time every two weeks it was not uncomfortable at all and I maintained functionality as well. Just a thought! Marc SSD 7 yrs AP 6yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Hi Liz, Concerning prednisone, I had taken this drug since 1993 for asthma and PA. In 1998 I had both double hip & double knee replacement surgeries during that summer, plus I had surgery to remove one of my four parathyroid glands because prednisone raised the calcium level of my blood serum. Also, I had a second surgery in February 2001 to remove my second parathyroid gland, because I still had not stopped taking this drug called prednisone. In 2002 I finally stopped taking this drug but not before I was diagnosed with prednisone induced diabetes. So, this drug often relieves internal inflammation, but it has major side effects. Moreover, I am one of the few men under 65 who has been diagnosed with osteoporosis in 2001. Sincerely, Bill age 60 living well in Washington DC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Hi Liz, So sorry you have had a bad flare. Rheums I have had have tried 5-10 mg. of Pred all the time. It didn't work for me and in way I am glad. We are all different and I have heard of people taking as little as 2mg daily that helped them. Side effects-bone loss- osteoporsis, weight gain, moon face, possibly even internal organ damage, masked infections.etc This approach seems to be cyclical in that years ago they gave it, it fell out of favor for obvious reasons, and now they are back giving it again. See you at the chat! Marti > My mobility is the pits…..need a hip replacement, ASAP. I haven't been > in a lot of " pain " , but I can hardly walk from one end of my house to > the other. Then a couple of weeks ago, I started really feeling worse > all over…..a general feeling of crappy. (Sed rate 55, low grade > fever….just felt like it took every ounce of energy I could muster to do > the most routine tasks like take a shower and brush my teeth!) > > > > I've been on the usual prescriptions including Enbrel, and just kept > feeling more and more rotten. The doc gave me a 16 day dose of > prednisone…….I'm about ½ way through it and feel like a human again! > I've had this dosage once before and it seemed to work miracles then > too. I'd like some feedback on prednisone taken in minimum doses, 24/7. > How small of dose could I take daily and get any results? Don't some of > you take it in small doses all the time? Why is it so effective…… and > other than dependence on it, what are the dangers? I sure do enjoy > feeling human, even if I do look like an overweight, aging toddler when > I walk. > > > > Thanks for your insight………….Liz > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2003 Report Share Posted October 16, 2003 I take 1.25 mgs daily (along with 25mgs vioxx and 200 mgs doxycycline and occasional cortisone injections). I started taking 25 mgs prednisone daily last December in desperation for an extreme flare that had been going on for a year (I've had PA for 5 and a half years but it was never that bad until a couple of years ago). When I first took it, the prednisone felt like an absolute miracle. My flare seemed to disappear almost entirely. But I was well aware of the bad side effects and I never wanted to stay on prednisone permanently I tapered down from 25 mgs to 5 mgs gradually over the course of a month and stayed at that level until about 4 months ago. I then switched from ibuprofen to vioxx and from 100mgs doxy to 200 mgs doxy about the same time (4 month ago). After that I felt great improvement and was able to taper down further to 1.25 mgs prednisone. I'm not sure what to attribute the improvement to. But I really am vastly improved, so something is working. I hope to eventually get off prednisone completely, but it's hard. These 1.25 mgs really still make a difference. Every time I try to reduce the dosage further, I begin to feel a flare starting. I don't have any noticable side effects so far from the prednisone. I think such a small dosage is not that bad, as long as I can get off it eventually. Sharon > My mobility is the pits…..need a hip replacement, ASAP. I haven't been > in a lot of " pain " , but I can hardly walk from one end of my house to > the other. Then a couple of weeks ago, I started really feeling worse > all over…..a general feeling of crappy. (Sed rate 55, low grade > fever….just felt like it took every ounce of energy I could muster to do > the most routine tasks like take a shower and brush my teeth!) > > > > I've been on the usual prescriptions including Enbrel, and just kept > feeling more and more rotten. The doc gave me a 16 day dose of > prednisone…….I'm about ½ way through it and feel like a human again! > I've had this dosage once before and it seemed to work miracles then > too. I'd like some feedback on prednisone taken in minimum doses, 24/7. > How small of dose could I take daily and get any results? Don't some of > you take it in small doses all the time? Why is it so effective…… and > other than dependence on it, what are the dangers? I sure do enjoy > feeling human, even if I do look like an overweight, aging toddler when > I walk. > > > > Thanks for your insight………….Liz > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 Kay, Why did you go off pred? I take it on and off (medrol dose pak and/or depo-medrol injections), and am just curious. Did you have any side effects? What were they? I try not to take too much pred but it really helps with the inflammation I get in my mouth and internally, as well as with the joint pain. What dosage were you on? I would like to get on it permanently since Celebrex does not alleviate the flares. The old nsaid's were the only ones that alleviated all symptoms, however, they destroyed my stomach and it took a year to heal when I got off them. Thanks...Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 Kay, Why did you go off pred? I take it on and off (medrol dose pak and/or depo-medrol injections), and am just curious. Did you have any side effects? What were they? I try not to take too much pred but it really helps with the inflammation I get in my mouth and internally, as well as with the joint pain. What dosage were you on? I would like to get on it permanently since Celebrex does not alleviate the flares. The old nsaid's were the only ones that alleviated all symptoms, however, they destroyed my stomach and it took a year to heal when I got off them. Thanks...Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 Kay, Thanks so much for the info. Did you actually experience weight gain from the pred, or just roundness in the face? I have to diet all the time, even though I am not on pred full time. I had a bone density test done and it was ok though. Did you ever have this test? The only reason I am considering the pred is that I get such horriffic symptoms in my mouth....I could deal with body pain much better...but the mouth...I just can't stand it any longer. It does calm down at times, but not for long and Celebrex doesn't cut it for the mouth symptoms. Pred takes them away within a day! I am only on low doses....I don't even take the full dose pak unless I get severe to the point where I can't swallow and feel like I am burning up inside...although I never actually have a fever. I try to take 2 to 4 mg and see if it helps. It usually does if I catch it right away. This illness has really affected my life, as I find myself planning everything around it. I can never do much or there I go right back into a flare. Debra! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 Hi Debra, I had been on Prednisone for almost a decade. I was taking 10 mg. for the past several years but had been on doses as high as 100 mg for short periods. I was concerned about long term effects--bone thinning, high cholesterol, etc. Also part of it was vanity--my face was round. I would avoid going on it fulltime. I noticed when I finally came off it (very gradually) I was much more achy. I have increased Mobic and it is helping. Kay Braddock Speedway German Wirehaired Pointers Paint Horses Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 How long does it take for the round face affect of Pred to happen? Adrienne is going on a Pred Dose Pack for the next... week or two. I remember (and have pictures) of when she was on it long term and how round her face got. She called pictures of herself during that time " the prednisone poster child' K Adrienne's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2003 Report Share Posted December 5, 2003 Adrienne's Mom, My rheumatologist told me that it would take longer than a few months; that was the longest time I was on it. I knew someone who was on it for years and they definitely had a round face. So, it must be somewhere in between those. Sorry, I can't be more exact. Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2003 Report Share Posted December 5, 2003 I knew someone who was on it for years and they definitely had a round face Whew, sounds like she shouldn't get a round face then from the week or two she has to do the dose pack. I recall the rounder fuller face when she was on it for about a year. But I didn't recall how long it took to happen. Thank you!!! K Adrienne's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2003 Report Share Posted December 5, 2003 Debra, I did not gain weight, I just developed a round face. I tend to stay on the thin side anyway. As with medication you need to weigh the benefit vs. risk. If 2 to 4 mg. makes a big difference in how you feel you might want to discuss full time use with your doctor. I think most of the side effects with prednisone are dose related. Just keep in mind that there are dangers in immune suppression. Have you tried other alternatives such as an increase or change in NSAIDs? For me increasing the amount of Mobic that I take has proved helpful. I have had bone scans done and my bones are in good shape in spite of the years of taking Prednisone. I've been pretty lucky in that respect. Hope you feel better soon. Kay Braddock Speedway German Wirehaired Pointers Paint Horses Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2003 Report Share Posted December 5, 2003 Adriennes Mom: I am on dosepak several times a year and low doses every month (4-8 mg per day when I get my period since it sets off a flare every single month)....and I get depo-medrol shots 2 to 3 times a year....I do not have a round face and I've noted no tendency to gain weight that is actually related to pred. I had to diet before I went on the pred anyway. I've seen stories on TV where people are on low doses and do gain alot of weight (people who are in accidents, etc. and have inflammation that won't subside), but this has not happened to me. My face is a bit too thin in my opinion so I wouldn't mind a bit of fullness...I just don't want any fullness to develop in the waist! I think it doesn't happen as long as you have breaks in between and are not on a constant dose...and also are not laid up in bed. I'm told inactivity plays a big role in this, although I am not able to exercise much at all since I got reiters. My older son is around Adriennes age - he is 21 (I've been reading the posts but not participating) and he began developing arthospondylitis around 15. I can see he's on the path to developing reiters though, as he gets fatigued easily and gets alot of aches and pains and bouts of diarrhea. He was on NSAID's for awhile a few years ago but has been off for some time now. Just curious if anyone else in your family has it?? Can't remember if you said you had it too? My younger son is also on the same path, he's already getting bouts of diarrhea at 11 and of course, the pediatrician thinks nothing of it. The older one recently saw another doctor in the same rheumatology practice who said he doesn't have anything!!! (Mind you, he was diagnosed by my rheumatologist who has 25 years of experience). The thing that is so ashame is that there isn't anything I can do to stop it, except teach them to take good care of themselves. My older son has taken pred a few times when he was in severe pain, but never for more than a day or two. He is not as sick as Adrienne is though and he goes for long periods without too many symptoms. I do hope Adrienne finds some relief, it's really difficult to be sick at that age when all your friends are out having fun. Debra! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2003 Report Share Posted December 6, 2003 Dear Debra, I am 56 and have been on prednisone for over 20 years...I thought it was a miracle drug (and it was) for a number of years, but now I am having side effects. I have NEVER taken over 10 mg and started out taking 3. Now I need 8 to function, and I have to admit that I hurt a lot. I have tried Celebrex and all the Nsaids. I have had both knees replaced and one hip. People tell me that is because of the prednisone, but I am not sure. I have AS and now that I am only on prednisone and Vioxx (50 mg. a day) I have a lot of pain in the shoulders. I think the arthritis travels. My knees and hip are better because they are fake, but the disease is looking for new territory to develop in. I have tried Enbrel and was able to get down to 3 mg of prednisone with the drug, but my doc and I decided if I couldn't get off prednisone completely, that it wasn't worth the side effect risk then of the Enbrel. He has changed his mind now. I will restart the Enbrel soon...as soon as Blue Cross approves it for me again. He now believes prednisone is a longer term danger. I am telling you to try some other meds before you go on prednisone full time. It is addictive. I am addicted at this time. I teach school full time and couldn't without it. I, of course, do not know your situation, but I do know that long term prednisone use is not good. I am going to retire (31 years teaching English) in a year and a half and hope I will be on a lower dose or maybe off it by then. My eyes also have suffered. My glasses need to be changed periodically. Old age? Maybe. Prednisone? Maybe. Hope this helps you make a decision. Sincerely, Debby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2003 Report Share Posted December 8, 2003 Debbie, I really don't want to go on the pred full-time, and am considering minocin, which I'm told seems to work. Just curious, did you have a bone density done? I did last year and it was ok. but I am only on part-time pred doses and shots a few times a year, so I assume that is not enough to have an effect. I've noticed that sometimes, while pred will take down my mouth inflammation, I seem to get alot of aches and pains while on it. Is that what you meant when you said you hurt alot? Or is that from reducing the dose? I was on dosepak a few times a few months ago and I seemed to have lots of bone pain afterward. Now that I'm taking a bit again (2mg only) I seem to have the same pain again, although I'm not sure if it's from snow clearing (exercise kills me) or my anemia, which has worsened after having 14 vials of blood taken a week ago. All I know is I feel terrible right now. Do you have reiters too...or just AS? Thanks so much for the input, I really appreciate it. It's difficult trying to make the right decision here. Debra! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 Debby, I stopped taking prednisone two weeks ago. I don't ever want to take it again. I was on it for over a year, between 6 - 10 mgs. per day. I wasn't able to stop taking it until I had been on Enbrel for 8 months. I am glad you are getting back on Enbrel. It totally cured my sores on the tongue and soft palate, and it must be helping everything else because I'm off pred. for the first time in over a year. I think even if you can only lower the prednisone dose, it is well worth it. My rheumy. doesn't approve of me going off prednisone, but I don't want to take it anymore. Once my brain decides I'm not taking something, that's all she wrote. When I was 10, doctors wanted me to take 7 aspirin a day, and I refused to take any, because I wanted to have a stomach lining when I grew up. It turns out I was right, now they know children shouldn't take aspirin, so I trust my instincts on this stuff. Plus, once some part of my brain makes that decision, there's no way I'm taking it anyway. It's a very stubborn section of my brain that makes these decisions. Good luck with getting back on Enbrel. Janet in SF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 Hi Lori. When I started taking oral prednisone I was told that it would take 10 to 14 days to start to saturate enough to begin working. I had tons of adverse side effects from these meds. They made me feel terrible and I was sick often. Personally, I hate prednisone and will never take it again. Just my 2 cents worth. Keep smilin' ! Randy Higgins Quote Link to comment Share on other sites More sharing options...
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