Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 Thanks...looks like I have to join yet another group... > Re: Prednisone > > > > This link contains info on the supplements I have used: > > hypoglycemia-talk/message/5971 > > > > > > > > > > > > > > > > Has anyone here ever had a course of Prednisone? I'm on > two > > > > > week > > > > > > > course of it now to settle down my asthma which has been > > > acting > > > > > up > > > > > > > since I developed a lower respiratory infection a couple > of > > > > > months > > > > > > > ago. > > > > > > > > > > > > > > My question stems from an unexpected side effect I > noticed. I > > > was > > > > > > > tested with borderline low T a while back but have been > on the > > > > > > fence > > > > > > > about weather my symptoms are severe enough to warrant > > > treating > > > > > it > > > > > > > directly. My energy and mood and some other things have > been > > > > > off > > > > > > > but not to point where its having a major impact on my > day > > > to > > > > > day > > > > > > > life and function. > > > > > > > > > > > > > > > > > > > > > The prednisone I'm on to settled my asthma back down has > had > > > > > > > interesting and unexpected side effect. I have seen a real > > > > > > measurable > > > > > > > positive increase in my energy level and an improvement in > > > mood > > > > > and > > > > > > > drive I had not expected. Not excessively but rather I'd > > > describe > > > > > > the > > > > > > > way I feel now as being what I used to feel was my normal > > > healthy > > > > > > > level. While I knew I had experienced a gradual decline in > > > these > > > > > > > areas over the last several years it was hard to > subjectively > > > > > > measure > > > > > > > how much till I compared it to how I'm feeling now. I > haven't > > > > > been > > > > > > > feeling sick but right now feel like my general feeling of > > > > > wellness > > > > > > > is better than its been in several years. > > > > > > > > > > > > > > > > > > > > > So here in lies my question . It seems to me, and I need > > > reality > > > > > > > check on this, that I gleaned somewhere the testosterone > > > behaves > > > > > > > similarly in the body to the way a steroid like prednisone > > > does. > > > > > If > > > > > > > that's is the case I wonder if my T level might just be > the > > > main > > > > > > > culprit in my lower functioning an general feeling of > > > wellness. I > > > > > > was > > > > > > > unsure if my T level was causing a problem for me because > I > > > never > > > > > > had > > > > > > > the depth of loss of function many of the low T sufferer > here > > > > > have > > > > > > > had. Now I'm wondering if raising my T level might > produce > > > the > > > > > > same > > > > > > > sort of improvements. > > > > > > > > > > > > > > > > > > > > > Has anyone who has testing their low T ever been > prescribed > > > > > > > prednisone for something and did you see similar kinds > of > > > > > > > improvements from treating your low T? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 That group happens to be a hypoglycemia group and I am one of only a few people that has treated the Adrenals on that group. Hypoglycemia is a symptom of Adrenal Fatigue. I have posted a lot of information on that group which would be difficult to repost over here. If you do a search for my ID you will get a lot of info from the messages I have posted there. If you determine that you need to treat your Adrenals, I'd be glad to help in any way I can. > > > > > > > > > > > > > > > > Has anyone here ever had a course of Prednisone? I'm on > > two > > > > > > week > > > > > > > > course of it now to settle down my asthma which has been > > > > acting > > > > > > up > > > > > > > > since I developed a lower respiratory infection a couple > > of > > > > > > months > > > > > > > > ago. > > > > > > > > > > > > > > > > My question stems from an unexpected side effect I > > noticed. I > > > > was > > > > > > > > tested with borderline low T a while back but have been > > on the > > > > > > > fence > > > > > > > > about weather my symptoms are severe enough to warrant > > > > treating > > > > > > it > > > > > > > > directly. My energy and mood and some other things have > > been > > > > > > off > > > > > > > > but not to point where its having a major impact on my > > day > > > > to > > > > > > day > > > > > > > > life and function. > > > > > > > > > > > > > > > > > > > > > > > > The prednisone I'm on to settled my asthma back down has > > had > > > > > > > > interesting and unexpected side effect. I have seen a real > > > > > > > measurable > > > > > > > > positive increase in my energy level and an improvement in > > > > mood > > > > > > and > > > > > > > > drive I had not expected. Not excessively but rather I'd > > > > describe > > > > > > > the > > > > > > > > way I feel now as being what I used to feel was my normal > > > > healthy > > > > > > > > level. While I knew I had experienced a gradual decline in > > > > these > > > > > > > > areas over the last several years it was hard to > > subjectively > > > > > > > measure > > > > > > > > how much till I compared it to how I'm feeling now. I > > haven't > > > > > > been > > > > > > > > feeling sick but right now feel like my general feeling of > > > > > > wellness > > > > > > > > is better than its been in several years. > > > > > > > > > > > > > > > > > > > > > > > > So here in lies my question . It seems to me, and I need > > > > reality > > > > > > > > check on this, that I gleaned somewhere the testosterone > > > > behaves > > > > > > > > similarly in the body to the way a steroid like prednisone > > > > does. > > > > > > If > > > > > > > > that's is the case I wonder if my T level might just be > > the > > > > main > > > > > > > > culprit in my lower functioning an general feeling of > > > > wellness. I > > > > > > > was > > > > > > > > unsure if my T level was causing a problem for me because > > I > > > > never > > > > > > > had > > > > > > > > the depth of loss of function many of the low T sufferer > > here > > > > > > have > > > > > > > > had. Now I'm wondering if raising my T level might > > produce > > > > the > > > > > > > same > > > > > > > > sort of improvements. > > > > > > > > > > > > > > > > > > > > > > > > Has anyone who has testing their low T ever been > > prescribed > > > > > > > > prednisone for something and did you see similar kinds > > of > > > > > > > > improvements from treating your low T? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Whew! I thought you had lost your marbles there for a second! 20mg is a high dose. I have been on anywhere from 40mg per day to 7.5mg per day, depending on how active the disease is. My current low of 7.5mg per day was only achieved by taking an experimental drug combination of pentoxifilline and prednisone together. Before that, I could never get below 15mg per day. 5mg is considered a nominal dose, and is about what the body produces naturally. Regards, K4 > > > > > > > > > > Has anyone here ever had a course of Prednisone? I'm on two > > > week > > > > > course of it now to settle down my asthma which has been acting > > > up > > > > > since I developed a lower respiratory infection a couple of > > > months > > > > > ago. > > > > > > > > > > My question stems from an unexpected side effect I > > noticed. I was > > > > > tested with borderline low T a while back but have been on the > > > > fence > > > > > about weather my symptoms are severe enough to warrant treating > > > it > > > > > directly. My energy and mood and some other things have been > > > off > > > > > but not to point where its having a major impact on my day to > > > day > > > > > life and function. > > > > > > > > > > > > > > > The prednisone I'm on to settled my asthma back down has had > > > > > interesting and unexpected side effect. I have seen a real > > > > measurable > > > > > positive increase in my energy level and an improvement in mood > > > and > > > > > drive I had not expected. Not excessively but rather > > I'd describe > > > > the > > > > > way I feel now as being what I used to feel was my > > normal healthy > > > > > level. While I knew I had experienced a gradual decline > > in these > > > > > areas over the last several years it was hard to subjectively > > > > measure > > > > > how much till I compared it to how I'm feeling now. I haven't > > > been > > > > > feeling sick but right now feel like my general feeling of > > > wellness > > > > > is better than its been in several years. > > > > > > > > > > > > > > > So here in lies my question . It seems to me, and I > > need reality > > > > > check on this, that I gleaned somewhere the > > testosterone behaves > > > > > similarly in the body to the way a steroid like prednisone does. > > > If > > > > > that's is the case I wonder if my T level might just be > > the main > > > > > culprit in my lower functioning an general feeling of > > wellness. I > > > > was > > > > > unsure if my T level was causing a problem for me > > because I never > > > > had > > > > > the depth of loss of function many of the low T sufferer here > > > have > > > > > had. Now I'm wondering if raising my T level might produce the > > > > same > > > > > sort of improvements. > > > > > > > > > > > > > > > Has anyone who has testing their low T ever been prescribed > > > > > prednisone for something and did you see similar kinds of > > > > > improvements from treating your low T? > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Right, the 5mg is what recommends for exactly what you wrote below, it's about the normal human production. The idea being that you get what you need (no more/no less), while giving the adrenals a chance to heal-themselves/rest-up/whatever. > Re: Prednisone > > > > Whew! I thought you had lost your marbles there for a second! > 20mg is a high dose. > > I have been on anywhere from 40mg per day to 7.5mg per day, > depending on how active the disease is. My current low of > 7.5mg per day was only achieved by taking an experimental > drug combination of pentoxifilline and prednisone together. > Before that, I could never get below 15mg per day. > > 5mg is considered a nominal dose, and is about what the body > produces naturally. > > > Regards, > > K4 > > > > > > > > > > > > > > Has anyone here ever had a course of Prednisone? I'm on > two > > > > week > > > > > > course of it now to settle down my asthma which has been > acting > > > > up > > > > > > since I developed a lower respiratory infection a couple of > > > > months > > > > > > ago. > > > > > > > > > > > > My question stems from an unexpected side effect I > > > noticed. I was > > > > > > tested with borderline low T a while back but have been on > the > > > > > fence > > > > > > about weather my symptoms are severe enough to warrant > treating > > > > it > > > > > > directly. My energy and mood and some other things have > been > > > > off > > > > > > but not to point where its having a major impact on my > day to > > > > day > > > > > > life and function. > > > > > > > > > > > > > > > > > > The prednisone I'm on to settled my asthma back down has > had > > > > > > interesting and unexpected side effect. I have seen a real > > > > > measurable > > > > > > positive increase in my energy level and an improvement in > mood > > > > and > > > > > > drive I had not expected. Not excessively but rather > > > I'd describe > > > > > the > > > > > > way I feel now as being what I used to feel was my > > > normal healthy > > > > > > level. While I knew I had experienced a gradual decline > > > in these > > > > > > areas over the last several years it was hard to > subjectively > > > > > measure > > > > > > how much till I compared it to how I'm feeling now. I > haven't > > > > been > > > > > > feeling sick but right now feel like my general feeling of > > > > wellness > > > > > > is better than its been in several years. > > > > > > > > > > > > > > > > > > So here in lies my question . It seems to me, and I > > > need reality > > > > > > check on this, that I gleaned somewhere the > > > testosterone behaves > > > > > > similarly in the body to the way a steroid like prednisone > does. > > > > If > > > > > > that's is the case I wonder if my T level might just be > > > the main > > > > > > culprit in my lower functioning an general feeling of > > > wellness. I > > > > > was > > > > > > unsure if my T level was causing a problem for me > > > because I never > > > > > had > > > > > > the depth of loss of function many of the low T sufferer > here > > > > have > > > > > > had. Now I'm wondering if raising my T level might produce > the > > > > > same > > > > > > sort of improvements. > > > > > > > > > > > > > > > > > > Has anyone who has testing their low T ever been prescribed > > > > > > prednisone for something and did you see similar kinds of > > > > > > improvements from treating your low T? > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Hi ! Geoff here. > Hi, group I have been trying to wean myself off predsione which I have > been taking for the last 3 yrs. I have developed sleeping disorders, > and depression does anyone know if this is a direct result of the > reduction in predsione? thanks for any info? Some of this is part and parcel of the rheumatic diseases, and some may or may not be attributable to the drug. Depending on the amount of pain or swelling taking place, as you wean from the Prednisone and joints swell, it becomes more difficult for them to bear any pressure and sleeping becomes fitful. Most rheumatics realize they don't sleep well and many will say they wake up 10-15 times a night, changing positions, etc. Those married will hear their spouses complaining of them constantly tossing and turning. A few years ago I read a sleep study done on rheumatics. They were, to the person, wrong about how fitful their sleep was. On average they were waking and changing positions 3x/minute all night long -- every 15-20 seconds. They slept 4 hours a night. I don't recall the effect of the corticosteroids or if they were accounted for in the study. But I know from personal experience the effect of the long-term sleep deprivation. Going on for years, this results in very premature aging. For more information on the " side-effects " of prednisone, go to www.rxlist.com and read all the tabs. Unless you are trained in the field, the more technical data will be Greek to you, but that's OK, read it anyway and use an online medical dictionary to educate yourself about the terms -- then bookmark the dictionary (add it to your " Favorites " for sure as anything your memory is not what you'd like and you'll need that reference in the future.) There is a weaning protocol at www.healingyou.org/prednisone.html. You may want to print that out and see if your doctor thinks it will work for you. Don't try going it alone. You need to have an allopathic Physician involved in this as they make their living with these Rx drugs. HTH (hope this helps) Geoff soli Deo gloria www.HealingYou.org - Your nonprofit source for remedies and aids in fighting these diseases, information on weaning from drugs, and nutritional kits for repairing adrenal damage; 100% volunteer staffed. (Courtesy: Captain Cook's www.800-800-cruise.com) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2005 Report Share Posted January 11, 2005 I have a question about Prednisone. Over the past few years my doctor and I have gone through the regular drug cycle that I'm sure most of you have also gone through Celebrex, Arava, Mtx, etc... and it always includes a (usually small) what my Rheumy calls a maintenance dose of Prednisone. I have now been on Enbrel for a little over a year and it has worked absolute wonders for me but I can't seem to get completely off the Prednisone. I always work myself down very very gradually but when I finally get to a stopping point all together I start have some pretty bad flare ups. I have seen what long term steroid use can do and it scares me to death. My ex was on Prednisone for Asthma and he is now in such bad shape because of it that when he gets a little cough he cracks ribs. He was in a MINOR fender bender a few weeks ago and was in the trauma ward for five days. He was taken to his local hospital and was airlifted from there to Vanderbilt trauma. I'm not kidding either about it being minor. There was hardly any damage to his or the other vehicle and he was wearing his seat belt but it really messed him up. His doctors said it was directly related to long term Prednisone use. (he is doing better now) I know all drugs can cause possible side effects especially the ones like Enbrel and I am willing to take that chance for the benefits because I am of no use to anyone without it but I truly don't like taking the Prednisone. Has anyone else had such a problem getting off the Prednisone? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2005 Report Share Posted January 11, 2005 I too have had trouble getting off of prednisone. Seems like every time we try that something bad happens. The first time I got shortness of breath and had a chronic cough for a long time that they could not diagnose and blamed it on my being fat but it went away with an increase in prednisone. The doc convinced me to try again a short time ago. This time I am going into a flare and my liver enzymes are elevated. This may be from changing cholesterol meds (my insurance company, in their infinite wisdom, didn't want to spend the money for the one I was on with no trouble. I have blood work tomorrow and see the the liver doc the day after. Sure hope it is a tempest in a teapot. I have been on the pred for 7 years and cannot be comfortable on less than 12 mg. So far have only had some slight thinning of bones for bad side effects. I have decided that quality of life in the short run is better than quantity in the long run. Anne I have a question about Prednisone. Over the past few years my doctor and I have gone through the regular drug cycle that I'm sure most of you have also gone through Celebrex, Arava, Mtx, etc... and it always includes a (usually small) what my Rheumy calls a maintenance dose of Prednisone. I have now been on Enbrel for a little over a year and it has worked absolute wonders for me but I can't seem to get completely off the Prednisone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2005 Report Share Posted January 11, 2005 Luckily, I have never had to take Prednisone ~ the doctor wanted to put me on it, then changed his mind because he said it is also known for increasing the psoriasis part of the disease. I also told him I would only take it as a last resort, and again luckily, remicade has worked wonders... I did all this because of the same exact situation as you. My ex-husband also was a steroid dependent asthmatic ~ and ended up with similar problems. He was finally even taken off of the steroid inhalers as he could not heal from even a scratch... He did use a lot of the bursting treatments when able, to avoid continuous use, but it was the only drug that kept him breathing, so... Good luck to you ~ the good news is it sounds like the side effects aren't impacting you too badly and I'm sure there are others here on the list that can answer your question... (idaho) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2005 Report Share Posted January 11, 2005 hi, i have a presc in my medicine cupboard for pred which i have not yet tried, for this very reason - i'm scared to death of the stuff because my dad was on it for 3 years and could not get totally off it either. regarding your ex-husband, i imagine his rib probs with coughing were possibly due to the fact pred plays serious havoc with bones and can cause osteoporosis. i'm sure it is likely you already know about this, but what came to mind when i read your message was whether or not you have had a bone density test done, to make sure you don't have any problems in that area... wish i could help you more. good luck. karen > > > I have a question about Prednisone. Over the past few years my > doctor and I have gone through the regular drug cycle that I'm sure > most of you have also gone through Celebrex, Arava, Mtx, etc... and > it always includes a (usually small) what my Rheumy calls a > maintenance dose of Prednisone. I have now been on Enbrel for a > little over a year and it has worked absolute wonders for me but I > can't seem to get completely off the Prednisone. I always work > myself down very very gradually but when I finally get to a stopping > point all together I start have some pretty bad flare ups. I have > seen what long term steroid use can do and it scares me to death. My > ex was on Prednisone for Asthma and he is now in such bad shape > because of it that when he gets a little cough he cracks ribs. He > was in a MINOR fender bender a few weeks ago and was in the trauma > ward for five days. He was taken to his local hospital and was > airlifted from there to Vanderbilt trauma. I'm not kidding either > about it being minor. There was hardly any damage to his or the > other vehicle and he was wearing his seat belt but it really messed > him up. His doctors said it was directly related to long term > Prednisone use. (he is doing better now) I know all drugs can cause > possible side effects especially the ones like Enbrel and I am > willing to take that chance for the benefits because I am of no use > to anyone without it but I truly don't like taking the Prednisone. > Has anyone else had such a problem getting off the Prednisone? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2005 Report Share Posted January 11, 2005 Hi Anne, I suggest that you have your doctor check your parathyroid glands because prednisone may affect them. That is what happened to me and I was on prednisone for about four years. This drug may force these glands to become overactive and pull calcium away from your bones and increase calcium in your blood serum. Also, Advair may be a possible substitute for prednisone, if not Enbrel, or Remicade. Sincerely, Reid in Washington DC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2005 Report Share Posted July 10, 2005 Hi Joan, My specialist (ENT) told me that the body naturally makes 5 mg a day. If your body isn’t making it, then he informed me that this would be a safe amount to take. My mother actually took this amount for six years but of course long term effects we don’t know of yet. She stopped taking it about six years ago. I’ve taken it for six months at a time but after bone scans I seem to be the same. The worst it affected me was weight gain and of course feeling as though I was hyper. Sleepless nights occasionally. I’d be interested in knowing too, because I’ve found that Australia seems to be a long way behind the States as far as Samters goes. From: samters [mailto:samters ] On Behalf Of Joan Miles Sent: Monday, 11 July 2005 3:46 AM samters Subject: prednisone I have recently (April) become a chronic prednisone taker, though only 5mg a day. I am aware of the long term effects, however, does anyone know at what rate, how much for how long it takes before these effects are noticeable? My doctor wants me on them until October, for other health reasons, and then wants to switch me to methotrexate. Anyone have any expertise about which would be the better choice to go with? Joan 36, PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2005 Report Share Posted September 1, 2005 Hi Jen, I’ve been put on it a few times a year and then go off for a while. The only side affect I’ve noticed is weight gain. The weight goes on fast but isn’t that easy to shed. I have osteopenia and the doctor still puts me on pred. Cheers From: samters [mailto:samters ] On Behalf Of Roth Sent: Thursday, 1 September 2005 9:57 PM samters Subject: Prednisone Hi, Just had a question. How many of you take Prednisone every day on a regular basis? I have been taking Prednisone at least 20mg everyday for over 1 yr. I know it is a very dangerous drug, but it's the only way I find any relief. Once I stop it I get really sick fast. Has anyone experienced any significant medical problems from prednisone? I know it causes a significant about of bone loss. Thanks, Jen truelori <lori@...> wrote: If you're about to have surgery I can't think of any reason to do the aspirin desensitization beforehand. Lori > hi and thanks for your responses. Next question: has anyone tried the > aspirin desensitisation before any surgery at all, and to what > effect?.Thanks Stay connected, organized, and protected. Take the tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2005 Report Share Posted September 1, 2005 Hi Jen. I have been taking prednisone for a year and a half on a daily basis. I started at 60 and am down to 10mg. a day. My doctor would prefer I get to every other day but this is where I feel the best (better). I have been on/off for 23 years so the damage done was to be expected. I have osteoporosis pretty bad and take a weekly bone builder for it. I ended up with fibromyalgia and a lupus like autoimmune disorder but not sure what contributed to that. Here is how we figured the daily amount was less than or equal to the bursts I had been using for years: Say I took a six week course starting with 60mg. and decreased 10mg. a week til done. 60mg. x 7 = 420mg., 50mg. x 7 = 350mg., 40mg. x 7 = 280mg., 30mg. x 7 = 210 mg. 20mg. x 7 = 140mg., 10mg. x 7 = 70mg. with a grand total of 1470mg. over the six week course. I would do this up to at least four times a year. The grand total at three times was 5880mg. unless I had more than four bursts. At a maintenance dose of 10mg. daily I would be takig 3650mg. for the year which is less than the bursts totally over the course. That was the option we chose and it has worked. Talk to your doctor about how much you took in a year and then go from there. I would try to get to every other day on a 20mg. dose as that is still considered high in the medical field. Good luck and let us know how you are doing. Trudy. > Hi, > > Just had a question. How many of you take Prednisone every day on a regular basis? I have been taking Prednisone at least 20mg everyday for over 1 yr. I know it is a very dangerous drug, but it's the only way I find any relief. Once I stop it I get really sick fast. Has anyone experienced any significant medical problems from prednisone? I know it causes a significant about of bone loss. > > Thanks, > Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2005 Report Share Posted September 1, 2005 Trudy, what type of bone builder do you take? I'm on a calcium supplement but I'm sure there's better around. Cheers Re: Prednisone Hi Jen. I have been taking prednisone for a year and a half on a daily basis. I started at 60 and am down to 10mg. a day. My doctor would prefer I get to every other day but this is where I feel the best (better). I have been on/off for 23 years so the damage done was to be expected. I have osteoporosis pretty bad and take a weekly bone builder for it. I ended up with fibromyalgia and a lupus like autoimmune disorder but not sure what contributed to that. Here is how we figured the daily amount was less than or equal to the bursts I had been using for years: Say I took a six week course starting with 60mg. and decreased 10mg. a week til done. 60mg. x 7 = 420mg., 50mg. x 7 = 350mg., 40mg. x 7 = 280mg., 30mg. x 7 = 210 mg. 20mg. x 7 = 140mg., 10mg. x 7 = 70mg. with a grand total of 1470mg. over the six week course. I would do this up to at least four times a year. The grand total at three times was 5880mg. unless I had more than four bursts. At a maintenance dose of 10mg. daily I would be takig 3650mg. for the year which is less than the bursts totally over the course. That was the option we chose and it has worked. Talk to your doctor about how much you took in a year and then go from there. I would try to get to every other day on a 20mg. dose as that is still considered high in the medical field. Good luck and let us know how you are doing. Trudy. > Hi, > > Just had a question. How many of you take Prednisone every day on a regular basis? I have been taking Prednisone at least 20mg everyday for over 1 yr. I know it is a very dangerous drug, but it's the only way I find any relief. Once I stop it I get really sick fast. Has anyone experienced any significant medical problems from prednisone? I know it causes a significant about of bone loss. > > Thanks, > Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2005 Report Share Posted September 1, 2005 I'm not sure what's significant to you, so I'll just tell you what I dealt with. I was on daily for about 2 years. I already have bone loss which isn't supposed to show yet, so maybe I always did. (?) I have purple striations at all skin-stretch points, which are permanent. I'm working on losing the last 20 of the 80 pounds I gained, but I've found that my weight is much more of a struggle than it used to be. As to peripheral but related issues: While I was still on prednisone, I got an infection in my foot. It required a year of highly-painful weekly laser surgeries to fix. Additionally, when I first went off, I had female issues and continue to have them to some extent. While I was on it, my appearance was shot. My hair fell out. I got the buffalo hump. I had that weird mid-body and facial weight-gain that you get. And just the weight itself of course. Compounding that was my emotional state which was decidedly not-good. My understanding is that this doesn't happen to everyone, but I'll never go back to that. I think everyone has to make their own decisions. But, I wouldn't trust doctors who say it's no big deal and not to worry about it. Because that's not realistic either. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2005 Report Share Posted September 1, 2005 Jen: I think it is one of those things that you just have to bite the bullet and take it. It is definitely a double edged sword. Carol Prednisone Hi, Just had a question. How many of you take Prednisone every day on a regular basis? I have been taking Prednisone at least 20mg everyday for over 1 yr. I know it is a very dangerous drug, but it's the only way I find any relief. Once I stop it I get really sick fast. Has anyone experienced any significant medical problems from prednisone? I know it causes a significant about of bone loss. Thanks, Jentruelori <lori@...> wrote: If you're about to have surgery I can't think of any reason to do the aspirin desensitization beforehand.Lori> hi and thanks for your responses. Next question: has anyone tried the > aspirin desensitisation before any surgery at all, and to what > effect?.Thanks Stay connected, organized, and protected. Take the tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2005 Report Share Posted September 1, 2005 WOW! I really feel for you... That is awful. How much prednisone were you taking daily for 2 yrs.? I have noticed a little weight gain and I have a very full face. As well as my hair is falling out a lot. It is a shame that the only drug that gives real relief can also make you so sick. How do you feel now that your off of it altogether? jessafeiler3 <jessafeiler@...> wrote: I'm not sure what's significant to you, so I'll just tell you what I dealt with. I was on daily for about 2 years. I already have bone loss which isn't supposed to show yet, so maybe I always did. (?) I have purple striations at all skin-stretch points, which are permanent. I'm working on losing the last 20 of the 80 pounds I gained, but I've found that my weight is much more of a struggle than it used to be.As to peripheral but related issues: While I was still on prednisone, I got an infection in my foot. It required a year of highly-painful weekly laser surgeries to fix. Additionally, when I first went off, I had female issues and continue to have them to some extent.While I was on it, my appearance was shot. My hair fell out. I got the buffalo hump. I had that weird mid-body and facial weight-gain that you get. And just the weight itself of course. Compounding that was my emotional state which was decidedly not-good.My understanding is that this doesn't happen to everyone, but I'll never go back to that. I think everyone has to make their own decisions. But, I wouldn't trust doctors who say it's no big deal and not to worry about it. Because that's not realistic either. Start your day with - make it your home page Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2005 Report Share Posted September 1, 2005 I was on 10-20 daily, which I think it standard dosage. I tried five for a couple of weeks, but it didn't work for me. Some people have success with every-other-day dosage, so you might want to try that if you haven't. It's supposed to mitigate the side effects. It's funny, but the hair was one of the hardest parts for me (mine's waist-length), so I hope you're doing okay with that. Funny how something so insignificant can define us. I'm not quite sure why I got as blimpy as I did. I'm happy to hear that you haven't experienced weight gain to the same degree, although any is always hard to deal with. I'm... I don't know how I am. Happier, I guess. More resigned, too. I've become accustomed to frequent inhaler usage (maybe 10 times a day, with better and worse days) and I've limited what I can do a little bit. (No more walking to the library at 7th & Chestnut from my apartment.) I take Singulair and Proventil and Nexium (prednisone fried the acid valves), though I can't take inhaled steroids. On some level, I accept that perfection isn't really in the cards. And I work a less-strenuous desk-type job that mostly requires mental acrobatics as opposed to physical ones. I think I've learned to push - just to keep pushing as hard as I possibly can. For example, I haven't taken a sick day since I started at my job in August of 2004. I figure if I got through law school before and during prednisone, I can do this now. You know what I mean? Definitely doesn't work for everyone, but I'm not sure what else to do. Regardless, I won't go back to prednisone. It was just too much bad. My doctor knows (but does not approve) of my stance on this which is, in short: I'd rather be dead. Literally. That's my own stance and I'm definitely not encouraging it. > WOW! I really feel for you... That is awful. How much prednisone were you taking daily for 2 yrs.? I have noticed a little weight gain and I have a very full face. As well as my hair is falling out a lot. It is a shame that the only drug that gives real relief can also make you so sick. How do you feel now that your off of it altogether? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2005 Report Share Posted September 1, 2005 In reference to all the prednisone side effects, I am writing a series of articles on the CSS web site about issues related to prednisone usage. I have written two and have a third one in the wings. I will mostly be writing about secondary problems related to steroids and how to cope with them. For those of you who take it long term it might be worth perusing. Carol www.cssassociation.org Re: Prednisone >I was on 10-20 daily, which I think it standard dosage. I tried five > for a couple of weeks, but it didn't work for me. Some people have > success with every-other-day dosage, so you might want to try that > if you haven't. It's supposed to mitigate the side effects. > > It's funny, but the hair was one of the hardest parts for me (mine's > waist-length), so I hope you're doing okay with that. Funny how > something so insignificant can define us. I'm not quite sure why I > got as blimpy as I did. I'm happy to hear that you haven't > experienced weight gain to the same degree, although any is always > hard to deal with. > > I'm... I don't know how I am. Happier, I guess. More resigned, too. > I've become accustomed to frequent inhaler usage (maybe 10 times a > day, with better and worse days) and I've limited what I can do a > little bit. (No more walking to the library at 7th & Chestnut from > my apartment.) I take Singulair and Proventil and Nexium (prednisone > fried the acid valves), though I can't take inhaled steroids. On > some level, I accept that perfection isn't really in the cards. And > I work a less-strenuous desk-type job that mostly requires mental > acrobatics as opposed to physical ones. I think I've learned to > push - just to keep pushing as hard as I possibly can. For example, > I haven't taken a sick day since I started at my job in August of > 2004. I figure if I got through law school before and during > prednisone, I can do this now. You know what I mean? Definitely > doesn't work for everyone, but I'm not sure what else to do. > > Regardless, I won't go back to prednisone. It was just too much bad. > My doctor knows (but does not approve) of my stance on this which > is, in short: I'd rather be dead. Literally. That's my own stance > and I'm definitely not encouraging it. > > >> WOW! I really feel for you... That is awful. How much prednisone > were you taking daily for 2 yrs.? I have noticed a little weight > gain and I have a very full face. As well as my hair is falling out > a lot. It is a shame that the only drug that gives real relief can > also make you so sick. How do you feel now that your off of it > altogether? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2005 Report Share Posted September 1, 2005 ok i had to write in about prednisone. i have had asthma all my life(my first attack was when i was 1) but the first time i had to go on prdenison was when i was 15 and was in the hospital for 3 days from an asthma attack. i am now 28 and have been on prednisone off and on for the past 13 years. 5 years ago i found out that i had osteopenia nad took fosomax for a year and now my bones are normal. i have gained weight nad even have the beginnings of cataracts. i have fibromyalgia and systemic candida which i am having luck treating with a product called threelac. i am an emotional wreck when i am on more than 20 mg. how can something that helps so well be so bad? a few years ago i had a healthy streak in which i did not need prednisone for over a year and hardly used my inhaler. that was when i started acupuncture and eiminated dairy (which i have been eating but should stop again). dairy really does aggravate asthma. and another thing taht our great westernized american medical community is not accurate about is that dairy products actually contain calcium taht is not absorbed into our bones very well. vegetables and supplements are the best sources. there is alot of info out there about this, look how cultures like the chinese hardly ever eat dairy but have much lower rates of osteporosis. anyways, that is off the subject. i hate taking pred and try not to but sometimes my polpys are literally starting to come out of my nostrils and i have to. hopefully my surgery this month will help. also, how many of you have found out that you have bone erosion in your sinuses? laura Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2005 Report Share Posted September 2, 2005 HI Carol, I've never really been able to get off prednisone for any length of time in 9 years. Lately when I get lower than 15 every other day, i get really sick and then I'm right back up to a 60 mg taper and big antibiotics for what tends to be a serious bacterial infection--I've also been treated for two aspergillus infections. So which side of the sword is the least frightening, the least debilitating??? I'll read your CSS articles and thanks for the "heads up." Liz Carol <shedokdo@...> wrote: In reference to all the prednisone side effects, I am writing a series of articles on the CSS web site about issues related to prednisone usage. I have written two and have a third one in the wings. I will mostly be writing about secondary problems related to steroids and how to cope with them. For those of you who take it long term it might be worth perusing. Carol www.cssassociation.org----- Original Message ----- From: "jessafeiler3" <jessafeiler@...><samters >Sent: Thursday, September 01, 2005 3:25 PMSubject: Re: Prednisone>I was on 10-20 daily, which I think it standard dosage. I tried five> for a couple of weeks, but it didn't work for me. Some people have> success with every-other-day dosage, so you might want to try that> if you haven't. It's supposed to mitigate the side effects.>> It's funny, but the hair was one of the hardest parts for me (mine's> waist-length), so I hope you're doing okay with that. Funny how> something so insignificant can define us. I'm not quite sure why I> got as blimpy as I did. I'm happy to hear that you haven't> experienced weight gain to the same degree, although any is always> hard to deal with.>> I'm... I don't know how I am. Happier, I guess. More resigned, too.> I've become accustomed to frequent inhaler usage (maybe 10 times a> day, with better and worse days) and I've limited what I can do a> little bit. (No more walking to the library at 7th & Chestnut from> my apartment.) I take Singulair and Proventil and Nexium (prednisone> fried the acid valves), though I can't take inhaled steroids. On> some level, I accept that perfection isn't really in the cards. And> I work a less-strenuous desk-type job that mostly requires mental> acrobatics as opposed to physical ones. I think I've learned to> push - just to keep pushing as hard as I possibly can. For example,> I haven't taken a sick day since I started at my job in August of> 2004. I figure if I got through law school before and during> prednisone, I can do this now. You know what I mean? Definitely> doesn't work for everyone, but I'm not sure what else to do.>> Regardless, I won't go back to prednisone. It was just too much bad.> My doctor knows (but does not approve) of my stance on this which> is, in short: I'd rather be dead. Literally. That's my own stance> and I'm definitely not encouraging it.>> >> WOW! I really feel for you... That is awful. How much prednisone> were you taking daily for 2 yrs.? I have noticed a little weight> gain and I have a very full face. As well as my hair is falling out> a lot. It is a shame that the only drug that gives real relief can> also make you so sick. How do you feel now that your off of it> altogether?>>>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 Hi Clara, What dosage of pred are you on? I'm taking 9mg daily and am 15 years post-tx. I haven't had a lot of problems post-tx but when do it seams to be that sinus infections are the majority. >Just before Christmas, I had a set of tests for head pressure and >thumping in my neck and head. The doctor is sending me to a >cardiologist, because my valves are not closing as well as they >should in my heart, but they also discovered, that I have 2 large >masses of sinus infection in my sinus cavity. I have had post nasal >drip for years and it has effected my >lung/breathing/caughing/asthma. The last 4-6 months though I >thought I had progresseed to fairly good breathing and no caughing. >I do not feel the sinus mass, but it did show up on the MRI/MRA of >my head/neck, according to my doctor. So she put me on >3prednisone/day and Bactrim DS ( some sulfa form of antibiotic?) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 Dianna, Thanks for the info. The doctor started me off on 3x 20mg/day for a week with a sulfa antibiotic, Bactrim. ( then I was supposed to cut to 2pills /day for a week and then 1 per day for a week. ) Monday I could not stand the 3 pills so I just took 1 (20 mg) and Tuesday I called the doctor. She said I had to take 2/day one morning and one at night. Of course I cannot sleep, but I can tolerate it better , I think. Today is the second day on that regiment. My sinus infection is definitely better, and may even clean up some of what has been called my " asthma/coughing " . And I am sorry if this is not exactly Liver stuff, but actually I think it is definitely connected with all my Autoimmune diseases and my liver cirrhosis. Clara from OR Re: [ ] Prednisone Hi Clara, What dosage of pred are you on? I'm taking 9mg daily and am 15 years post-tx. I haven't had a lot of problems post-tx but when do it seams to be that sinus infections are the majority. >Just before Christmas, I had a set of tests for head pressure and >thumping in my neck and head. The doctor is sending me to a >cardiologist, because my valves are not closing as well as they >should in my heart, but they also discovered, that I have 2 large >masses of sinus infection in my sinus cavity. I have had post nasal >drip for years and it has effected my >lung/breathing/caughing/asthma. The last 4-6 months though I >thought I had progresseed to fairly good breathing and no caughing. >I do not feel the sinus mass, but it did show up on the MRI/MRA of >my head/neck, according to my doctor. So she put me on >3prednisone/day and Bactrim DS ( some sulfa form of antibiotic?) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 Did you tell your rheumy about your prior experience? That is very important. I have an online friend who has bad reactions to cortisone and has to be hospitalized when she is prescribed the stuff. She has serious emotional reactions. I was just on a burst of 69-40-20 and though I have had the stuff many times in the past, this time I was a bit of a pain emotionally. Unfortunately we were in the midst of a move and the stress of that on top of my reactions to the prednisone wasn't pleasant for my poor husband. I told him what was doing it and that I was trying to behave myself but I felt like a real heel acting the way I did. I hope you will call the rheumy and talk to the nurse anyway. Please let us know how it all comes out. GA By the thrid day, I was so disoriented and feeling out of > control and crazy. Even the taper was feeling funny. So, I've not > filled my perscription yet for it, I " m unsure about what to do. > > > > > > > > > > > ------------------------------------------------- > Post message: > > Set your subscription to digest (one email a day) > / > > Contributions to RISG.ORG are tax deductible. Credit Card or PayPal > http://www.risg.org/contributions.htm > > You're Not Alone! > http://www.risg.org > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 HI Yes, I was an emotional mess! and Yes, I did share my experience with the Rheumy right then and there. She assured me that the 20 mg 3 x a day was way too much and that I should not have that kind of a reaction with 10 mg once a day. After yesterdays event, I'm highly considering trying the prednisone agaoin. Quote Link to comment Share on other sites More sharing options...
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