Guest guest Posted August 26, 2009 Report Share Posted August 26, 2009 I am on 20 mg a day of prednisone and experience all the negative adverse effects it has to offer. Ron On Aug 25, 2009, at 11:48 PM, mister_manganese wrote: > Most days I feel pretty crummy. Although my quality of life has > improved a lot since my asthma has been under good control with a > regiment of meds that includes Xolair, I still usually feel crummy > these days and generally lacking energy and motivation. > > I suspect my immune system is hyperactive. I haven't been sick with > anything in two and a half years. But I break out in hives from sun > exposure and I have rosacea on my face that Metrogel really doesn't > seem to help. I've been tested for lupus and found not have it. > > But prednisone remains a miracle cure for all my problems. Even at > 10 mg a day the hives quickly go away, the rosacea retreats, and I > feel energetic and motivated. Even my peak flow measurements jump > 10%. I'm a different person. In essence, I feel good. I guess you > could say I'm a potential prednisone addict but, knowing better, I > only take the stuff in exceptional circumstances. > > Maybe the years of the Xolair, Advair, Spriva, Zyretec regiment are > not doing what they used to. I breath OK and rarely need a rescue > puff of albuterol but other inflammatory conditions are cropping up. > > So I'm wondering if anyone has been on a long-term low-dose diet of > prednisone, say 5 or 10 mg per day, and if this carries with it all > the bad long term effects of higher doses. Any experiences with long- > term low doses of predisone will be appreciated. > . > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2009 Report Share Posted August 26, 2009 > > I am on 20 mg a day of prednisone and experience all the negative > adverse effects it has to offer. > > Ron > Bless your heart! I was one of the fortunate ones that Xolair took away my need for pred. I still neb 3 to 4 times a day with atrovent/xopenex and twice with pulmicort added to that mix and Advair 2x a day but NO pred. Doug Group founder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2009 Report Share Posted August 26, 2009 I hear you....I have three kinds of days....crummy (which fortunately don't happen quite as often, where I don't want to do much of anything that requires physical motion), so-so days, where I feel okay and get normal routine tasks done, and really good days where I not only get normal routine tasks done, but I can also do something extra like clean out a closet, straighten up the house, dust, and vacuum. These days happen at times when the humidity is down, the pollen and mold is down. I really should keep a chart but it is too much trouble. So I just try to keep mental tabs on how I feel from day to day. Most of my days are so-so and even on those days, if I make myself (mental challenge) I can get something extra done, like maybe a drawer cleaned out, or my computer table cleaned up and organized. So I completely understand. The hard days for me are the yucky days when I have obligations and have to get out and get moving. On those days, I get nothing done except to meet my obligations. As to rosacea, I had it really bad for a while after I quit taking prednisone so often (even before xolair--I was still on prednisone two or three times a year, but not as often as previously.) One dermatologist that I went to had me on Metrogel and a low dose antibiotic (doxycycline). The second one changed the antibiotic but kept me on metrogel. Then because of insurance I had to change to another dermatologist. Under her I took the very low dose antibiotic and she gave me noritate cream instead of Metrogel. After about a year, she took me off the antibiotic completely. I just use the Noritate and have had no more problems with the roacea. I do use 35 or 50 spf sunscreen and moisturizing cream...face, arms, etc. So far the sun has not bothered me but I don't go out during the very hot part of the day, either. (We have had over 50 days of 100+ temps this summer--very, very rare for our city that usually has one or two and some summers we don't even reach 100.) You might ask your dermatologist about changing the cream. Just a suggestion.... I have done so much better overall on xolair that I can't complain about the yucky days. At least even on those days I can get up, get dressed, and do a few routine things. But I totally understand about the lack of energy! Do you take a vitamin? Just curious. And my internists draws blood about every three to four months to make sure I don't become anemic again and to make sure all of the " counts " are where they should be. I am sure you have talked with your PCP about the lack of energy. My personal opinion...some of the drugs we take tend to make us a little lethargic from time to time and I also know that some of mine is just a mind-set.... Have a good day today..... Adah From: mister_manganese <barryb@...> Subject: [ ] Low dose prednisone Date: Tuesday, August 25, 2009, 11:48 PM Most days I feel pretty crummy. Although my quality of life has improved a lot since my asthma has been under good control with a regiment of meds that includes Xolair, I still usually feel crummy these days and generally lacking energy and motivation. I suspect my immune system is hyperactive. I haven't been sick with anything in two and a half years. But I break out in hives from sun exposure and I have rosacea on my face that Metrogel really doesn't seem to help. I've been tested for lupus and found not have it. But prednisone remains a miracle cure for all my problems. Even at 10 mg a day the hives quickly go away, the rosacea retreats, and I feel energetic and motivated. Even my peak flow measurements jump 10%. I'm a different person. In essence, I feel good. I guess you could say I'm a potential prednisone addict but, knowing better, I only take the stuff in exceptional circumstances. Maybe the years of the Xolair, Advair, Spriva, Zyretec regiment are not doing what they used to. I breath OK and rarely need a rescue puff of albuterol but other inflammatory conditions are cropping up. So I'm wondering if anyone has been on a long-term low-dose diet of prednisone, say 5 or 10 mg per day, and if this carries with it all the bad long term effects of higher doses. Any experiences with long-term low doses of predisone will be appreciated. .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2009 Report Share Posted August 26, 2009 Barry, This is the nurse in me speaking. Your adrenal glands are likely not producing enough cortisol. Cortisol is the stress hormone that gives us energy as it affects metabolism and prevents inflammatory reactions. Lots of use of prednisone will dampen the function of your adrenals so they will not produce enough cortisol ergo all your symptoms of fatigue, feeling crummy and being all subject to inflammation. A normal body produces about 7.5 mg pred per day. So if you are producing less, it makes perfect sense that 10 mg makes you feel ok. I have been told anything under 10 mg per day should not produce so many side effects but you want to be on the lowest dose possible to feel ok. What to do? Go to your MD and ask to be evaluated for adrenal insufficiency. Describe the long-term pred use and your symptoms of fatigue. They can do an endocrine stimulation test (ACTH stimulation) which stimulates your adrenals (located above the kidneys) to churn out cortisol. Then they can see if they churn out enough via blood tests. If not, you are a candidate for a very slow taper (eg 1 mg a month) or long-term, low dose pred. That is where I am at and what you are telling us is not a surprise at all. Keep us posted! ________________________________ From: mister_manganese <barryb@...> Sent: Wednesday, August 26, 2009 12:48:36 AM Subject: [ ] Low dose prednisone Most days I feel pretty crummy. Although my quality of life has improved a lot since my asthma has been under good control with a regiment of meds that includes Xolair, I still usually feel crummy these days and generally lacking energy and motivation. I suspect my immune system is hyperactive. I haven't been sick with anything in two and a half years. But I break out in hives from sun exposure and I have rosacea on my face that Metrogel really doesn't seem to help. I've been tested for lupus and found not have it. But prednisone remains a miracle cure for all my problems. Even at 10 mg a day the hives quickly go away, the rosacea retreats, and I feel energetic and motivated. Even my peak flow measurements jump 10%. I'm a different person. In essence, I feel good. I guess you could say I'm a potential prednisone addict but, knowing better, I only take the stuff in exceptional circumstances. Maybe the years of the Xolair, Advair, Spriva, Zyretec regiment are not doing what they used to. I breath OK and rarely need a rescue puff of albuterol but other inflammatory conditions are cropping up. So I'm wondering if anyone has been on a long-term low-dose diet of prednisone, say 5 or 10 mg per day, and if this carries with it all the bad long term effects of higher doses. Any experiences with long-term low doses of predisone will be appreciated. .. __________________________________________________________________ Canada Toolbar: Search from anywhere on the web, and bookmark your favourite sites. Download it now http://ca.toolbar.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 Unfortunately even when Xolair was definitely helping the asthma and sinusitis I can't say that I felt really good. The body pains (probably arthritis) got worse. Like you, I felt tired a lot too - and still do. My rheumy also tested me for Lupus and it was negative but my inflammation is extremely high. Interestingly, my pulmo said the Plaquenil would help the allergies. I'm not so sure that it ever did but for a while - a year, say, it did help with the joint/bone/body pains. About 6 weeks ago I had a severe reaction to the Plaquenil after increasing it to the standard dose. I was just about crazy from the symptoms - sort of a toxic shock. My rheumy was out of the country and the situation was awful. Eventually I more-or-less recovered but of course the very painful arthritis returned. After waiting about 4 weeks I tried Plaquenil again and had the same reaction. Digressing a bit perhaps, I realize that asthma, sinusitis, and arthritis are all inflammatory diseases but I assume they must have a different source or mechanism of some kind. Maybe others have received asthma/allergy benefit from arthritis meds but I haven't. Some docs (one nasty dermatologist comes to mind) have arrogantly informed me that the " a " diseases such as asthma, arthritis, and allergies are all inter-related. (i.e., read " they're all emotional " ) Ok, so where's the great treatment that takes care of all of them without wrecking the mind and body. And it's not steroids! (Glumly) So, now I'm without any really good way to control asthma and allergies OR arthritis! > > Most days I feel pretty crummy. Although my quality of life has improved a lot since my asthma has been under good control with a regiment of meds that includes Xolair, I still usually feel crummy these days and generally lacking energy and motivation. > > I suspect my immune system is hyperactive. I haven't been sick with anything in two and a half years. But I break out in hives from sun exposure and I have rosacea on my face that Metrogel really doesn't seem to help. I've been tested for lupus and found not have it. > > But prednisone remains a miracle cure for all my problems. Even at 10 mg a day the hives quickly go away, the rosacea retreats, and I feel energetic and motivated. Even my peak flow measurements jump 10%. I'm a different person. In essence, I feel good. I guess you could say I'm a potential prednisone addict but, knowing better, I only take the stuff in exceptional circumstances. > > Maybe the years of the Xolair, Advair, Spriva, Zyretec regiment are not doing what they used to. I breath OK and rarely need a rescue puff of albuterol but other inflammatory conditions are cropping up. > > So I'm wondering if anyone has been on a long-term low-dose diet of prednisone, say 5 or 10 mg per day, and if this carries with it all the bad long term effects of higher doses. Any experiences with long-term low doses of predisone will be appreciated. > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 Thanks for the reply, Adah. You may have hit the nail on the head, so to speak. Hot humid summer days are trapping me inside and history reminds me that being inside with all the mold and pet odors and nasty carpets are not good for me. And I don't get much exercise so my health takes a hit. You asked if I take vitamins. The answer is yes, just some simple one-a-day type. Nothing more. Still, I'm amazed at how even a low dose of prednisone wipes out all my problems and energizes me in a big way. If I asked my doctor for a long term low-dose prescription I doubt he would refuse. So I wonder if I should sell my soul to the devil or if the kickback of prednisone side effects would would quickly negate all the positive effects. Thanks for sharing your experience with rosacea. I'm sitting here now with sores and irritation all over my nose and face so the Metrogel is not working. I'll talk to my doctor about your experience with low dose antibiotics and noritate cream. > > > From: mister_manganese <barryb@...> > Subject: [ ] Low dose prednisone > > Date: Tuesday, August 25, 2009, 11:48 PM > > > > > > > Most days I feel pretty crummy. Although my quality of life has improved a lot since my asthma has been under good control with a regiment of meds that includes Xolair, I still usually feel crummy these days and generally lacking energy and motivation. > > I suspect my immune system is hyperactive. I haven't been sick with anything in two and a half years. But I break out in hives from sun exposure and I have rosacea on my face that Metrogel really doesn't seem to help. I've been tested for lupus and found not have it. > > But prednisone remains a miracle cure for all my problems. Even at 10 mg a day the hives quickly go away, the rosacea retreats, and I feel energetic and motivated. Even my peak flow measurements jump 10%. I'm a different person. In essence, I feel good. I guess you could say I'm a potential prednisone addict but, knowing better, I only take the stuff in exceptional circumstances. > > Maybe the years of the Xolair, Advair, Spriva, Zyretec regiment are not doing what they used to. I breath OK and rarely need a rescue puff of albuterol but other inflammatory conditions are cropping up. > > So I'm wondering if anyone has been on a long-term low-dose diet of prednisone, say 5 or 10 mg per day, and if this carries with it all the bad long term effects of higher doses. Any experiences with long-term low doses of predisone will be appreciated. > . > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 Thanks for your reply, . I've been wondering if maybe by body isn't producing enough cortisone. I will discuss this with my doctor . I need to see him about the rosacea being out of control anyway. I haven't used Prednisone often in the past, only once or twice a year for asthma, and I usually feel exceptionally good then. Except I was recently given a quick low dose (10 mg/day) to calm itchy hives on my arms presumably due to sun exposure. I was feeling crummy before the Prednisone, great while taking it, and crummy again after tapering off it. The Prednisone wiped out the hives (and rosacea) but now the hives keep starting to come back so I smother them with hyrdocortisone cream and take a couple benadryl and that works for a short while. > > Barry, > > This is the nurse in me speaking. Your adrenal glands are likely not producing enough cortisol. Cortisol is the stress hormone that gives us energy as it affects metabolism and prevents inflammatory reactions. Lots of use of prednisone will dampen the function of your adrenals so they will not produce enough cortisol ergo all your symptoms of fatigue, feeling crummy and being all subject to inflammation. > > A normal body produces about 7.5 mg pred per day. So if you are producing less, it makes perfect sense that 10 mg makes you feel ok. I have been told anything under 10 mg per day should not produce so many side effects but you want to be on the lowest dose possible to feel ok. > > What to do? Go to your MD and ask to be evaluated for adrenal insufficiency. Describe the long-term pred use and your symptoms of fatigue. They can do an endocrine stimulation test (ACTH stimulation) which stimulates your adrenals (located above the kidneys) to churn out cortisol. Then they can see if they churn out enough via blood tests. If not, you are a candidate for a very slow taper (eg 1 mg a month) or long-term, low dose pred. That is where I am at and what you are telling us is not a surprise at all. > > Keep us posted! > > > > > > > > ________________________________ > From: mister_manganese <barryb@...> > > Sent: Wednesday, August 26, 2009 12:48:36 AM > Subject: [ ] Low dose prednisone > > > Most days I feel pretty crummy. Although my quality of life has improved a lot since my asthma has been under good control with a regiment of meds that includes Xolair, I still usually feel crummy these days and generally lacking energy and motivation. > > I suspect my immune system is hyperactive. I haven't been sick with anything in two and a half years. But I break out in hives from sun exposure and I have rosacea on my face that Metrogel really doesn't seem to help. I've been tested for lupus and found not have it. > > But prednisone remains a miracle cure for all my problems. Even at 10 mg a day the hives quickly go away, the rosacea retreats, and I feel energetic and motivated. Even my peak flow measurements jump 10%. I'm a different person. In essence, I feel good. I guess you could say I'm a potential prednisone addict but, knowing better, I only take the stuff in exceptional circumstances. > > Maybe the years of the Xolair, Advair, Spriva, Zyretec regiment are not doing what they used to. I breath OK and rarely need a rescue puff of albuterol but other inflammatory conditions are cropping up. > > So I'm wondering if anyone has been on a long-term low-dose diet of prednisone, say 5 or 10 mg per day, and if this carries with it all the bad long term effects of higher doses. Any experiences with long-term low doses of predisone will be appreciated. > . > > > > > > __________________________________________________________________ > Canada Toolbar: Search from anywhere on the web, and bookmark your favourite sites. Download it now > http://ca.toolbar.. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 > > > > Most days I feel pretty crummy. Although my quality of life has improved a lot since my asthma has been under good control with a regiment of meds that includes Xolair, I still usually feel crummy these days and generally lacking energy and motivation. > > > > I suspect my immune system is hyperactive. I haven't been sick with anything in two and a half years. But I break out in hives from sun exposure and I have rosacea on my face that Metrogel really doesn't seem to help. I've been tested for lupus and found not have it. > > > > But prednisone remains a miracle cure for all my problems. Even at 10 mg a day the hives quickly go away, the rosacea retreats, and I feel energetic and motivated. Even my peak flow measurements jump 10%. I'm a different person. In essence, I feel good. I guess you could say I'm a potential prednisone addict but, knowing better, I only take the stuff in exceptional circumstances. > > > > Maybe the years of the Xolair, Advair, Spriva, Zyretec regiment are not doing what they used to. I breath OK and rarely need a rescue puff of albuterol but other inflammatory conditions are cropping up. > > > > So I'm wondering if anyone has been on a long-term low-dose diet of prednisone, say 5 or 10 mg per day, and if this carries with it all the bad long term effects of higher doses. Any experiences with long-term low doses of predisone will be appreciated. > > . > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 We are fortunate and have kept the mold out of our house. (When a pipe broke, we tore our all of the old carpet, had someone come in and " dry " the floors and had new carpet put in--that's another story). My husband puts bleach down the drain pipe for the air conditioner (per a repairman when the drain overflowed one time). We have never had indoor pets, so no problem there. I have always been allergic to cats, even before my asthma became really bad. So as long as our A C works and we keep the fans going, I am okay. But even then, it the day is hot and really humid, I even feel it inside. Xolair has helped the allergic asthma so much, that I don't mind a few days when I don't feel really peppy! Have a great rest of the day. Hope the dermatologist can help you or at least will have you try the other. Adah From: mister_manganese <barryb@...> Subject: [ ] Re: Low dose prednisone Date: Wednesday, August 26, 2009, 10:17 PM Thanks for the reply, Adah. You may have hit the nail on the head, so to speak. Hot humid summer days are trapping me inside and history reminds me that being inside with all the mold and pet odors and nasty carpets are not good for me. And I don't get much exercise so my health takes a hit. You asked if I take vitamins. The answer is yes, just some simple one-a-day type. Nothing more. Still, I'm amazed at how even a low dose of prednisone wipes out all my problems and energizes me in a big way. If I asked my doctor for a long term low-dose prescription I doubt he would refuse. So I wonder if I should sell my soul to the devil or if the kickback of prednisone side effects would would quickly negate all the positive effects. Thanks for sharing your experience with rosacea. I'm sitting here now with sores and irritation all over my nose and face so the Metrogel is not working. I'll talk to my doctor about your experience with low dose antibiotics and noritate cream. > > > From: mister_manganese <barryb@...> > Subject: [ ] Low dose prednisone > > Date: Tuesday, August 25, 2009, 11:48 PM > > > > > > > Most days I feel pretty crummy. Although my quality of life has improved a lot since my asthma has been under good control with a regiment of meds that includes Xolair, I still usually feel crummy these days and generally lacking energy and motivation. > > I suspect my immune system is hyperactive. I haven't been sick with anything in two and a half years. But I break out in hives from sun exposure and I have rosacea on my face that Metrogel really doesn't seem to help. I've been tested for lupus and found not have it. > > But prednisone remains a miracle cure for all my problems. Even at 10 mg a day the hives quickly go away, the rosacea retreats, and I feel energetic and motivated. Even my peak flow measurements jump 10%. I'm a different person. In essence, I feel good. I guess you could say I'm a potential prednisone addict but, knowing better, I only take the stuff in exceptional circumstances. > > Maybe the years of the Xolair, Advair, Spriva, Zyretec regiment are not doing what they used to. I breath OK and rarely need a rescue puff of albuterol but other inflammatory conditions are cropping up. > > So I'm wondering if anyone has been on a long-term low-dose diet of prednisone, say 5 or 10 mg per day, and if this carries with it all the bad long term effects of higher doses. Any experiences with long-term low doses of predisone will be appreciated. > . > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 Barry- I'm following your topic because I also have low energy and a serious lack of inclination to do anything besides play on the puter and watch NCIS.? I do run a piano tuning business, so when the phone rings I go to work.? Since I've weaned off of Prednisone I also have more rosacea than usual .? I also miss my energy level and the ability to laugh at a joke without coughing for a minute afterwards. -----Original Message----- From: mister_manganese <barryb@...> Sent: Wed, Aug 26, 2009 8:49 pm Subject: [ ] Re: Low dose prednisone Thanks for your reply, . I've been wondering if maybe by body isn't producing enough cortisone. I will discuss this with my doctor . I need to see him about the rosacea being out of control anyway. I haven't used Prednisone often in the past, only once or twice a year for asthma, and I usually feel exceptionally good then. Except I was recently given a quick low dose (10 mg/day) to calm itchy hives on my arms presumably due to sun exposure. I was feeling crummy before the Prednisone, great while taking it, and crummy again after tapering off it. The Prednisone wiped out the hives (and rosacea) but now the hives keep starting to come back so I smother them with hyrdocortisone cream and take a couple benadryl and that works for a short while. > > Barry, > > This is the nurse in me speaking. Your adrenal glands are likely not producing enough cortisol. Cortisol is the stress hormone that gives us energy as it affects metabolism and prevents inflammatory reactions. Lots of use of prednisone will dampen the function of your adrenals so they will not produce enough cortisol ergo all your symptoms of fatigue, feeling crummy and being all subject to inflammation. > > A normal body produces about 7.5 mg pred per day. So if you are producing less, it makes perfect sense that 10 mg makes you feel ok. I have been told anything under 10 mg?per day?should not produce so many side effects but you want to be on the lowest dose possible to feel ok. > > What to do? Go to your MD and ask to be evaluated for adrenal insufficiency. Describe the long-term pred use and your symptoms of fatigue. They can do an endocrine stimulation test (ACTH stimulation) which stimulates your adrenals (located above the kidneys) to churn out cortisol. Then they can see if they churn out enough via blood tests.?If not, you are a candidate for a very slow taper (eg 1 mg a month) or long-term, low dose pred. That is where I am at and what you are telling us is not a surprise at all. > > Keep us posted! > > > > ? > > > > ________________________________ > From: mister_manganese <barryb@...> > > Sent: Wednesday, August 26, 2009 12:48:36 AM > Subject: [ ] Low dose prednisone > > ? > Most days I feel pretty crummy. Although my quality of life has improved a lot since my asthma has been under good control with a regiment of meds that includes Xolair, I still usually feel crummy these days and generally lacking energy and motivation. > > I suspect my immune system is hyperactive. I haven't been sick with anything in two and a half years. But I break out in hives from sun exposure and I have rosacea on my face that Metrogel really doesn't seem to help. I've been tested for lupus and found not have it. > > But prednisone remains a miracle cure for all my problems. Even at 10 mg a day the hives quickly go away, the rosacea retreats, and I feel energetic and motivated. Even my peak flow measurements jump 10%. I'm a different person. In essence, I feel good. I guess you could say I'm a potential prednisone addict but, knowing better, I only take the stuff in exceptional circumstances. > > Maybe the years of the Xolair, Advair, Spriva, Zyretec regiment are not doing what they used to. I breath OK and rarely need a rescue puff of albuterol but other inflammatory conditions are cropping up. > > So I'm wondering if anyone has been on a long-term low-dose diet of prednisone, say 5 or 10 mg per day, and if this carries with it all the bad long term effects of higher doses. Any experiences with long-term low doses of predisone will be appreciated. > . > > > > > > __________________________________________________________ > Canada Toolbar: Search from anywhere on the web, and bookmark your favourite sites. Download it now > http://ca.toolbar.. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 I am amazed at some of the post on this site. Its as if we all have the same body. I am still taking my Xolair and it really helps. If I am late taking it, I get the itch in my hands and legs. It is often unbearable. I have gotten rid of the skin ailments by using 100% shea butter that comes from Africa in the goads. It has made a world of difference. My husgand uses it as well. My problem is affording the copays for Xolair and all the other meds. It is costing me a fortune every month. I do my own shots and sometimes I have some to run down my arm or thigh but not a lot. It still seems to work though. Has anyone else been in the trials for Xolair? Gwendolyn Rafter,MAOM,MBA/HRM ________________________________ From: Adah Voigt <asthmatic50@...> Sent: Thursday, August 27, 2009 10:18:19 AM Subject: Re: [ ] Re: Low dose prednisone We are fortunate and have kept the mold out of our house. (When a pipe broke, we tore our all of the old carpet, had someone come in and " dry " the floors and had new carpet put in--that's another story). My husband puts bleach down the drain pipe for the air conditioner (per a repairman when the drain overflowed one time). We have never had indoor pets, so no problem there. I have always been allergic to cats, even before my asthma became really bad. So as long as our A C works and we keep the fans going, I am okay. But even then, it the day is hot and really humid, I even feel it inside. Xolair has helped the allergic asthma so much, that I don't mind a few days when I don't feel really peppy! Have a great rest of the day. Hope the dermatologist can help you or at least will have you try the other. Adah From: mister_manganese <barryb@citiescommer ce.com> Subject: [ ] Re: Low dose prednisone Date: Wednesday, August 26, 2009, 10:17 PM Thanks for the reply, Adah. You may have hit the nail on the head, so to speak. Hot humid summer days are trapping me inside and history reminds me that being inside with all the mold and pet odors and nasty carpets are not good for me. And I don't get much exercise so my health takes a hit. You asked if I take vitamins. The answer is yes, just some simple one-a-day type. Nothing more. Still, I'm amazed at how even a low dose of prednisone wipes out all my problems and energizes me in a big way. If I asked my doctor for a long term low-dose prescription I doubt he would refuse. So I wonder if I should sell my soul to the devil or if the kickback of prednisone side effects would would quickly negate all the positive effects. Thanks for sharing your experience with rosacea. I'm sitting here now with sores and irritation all over my nose and face so the Metrogel is not working. I'll talk to my doctor about your experience with low dose antibiotics and noritate cream. > > > From: mister_manganese <barryb@...> > Subject: [ ] Low dose prednisone > > Date: Tuesday, August 25, 2009, 11:48 PM > > > > > > > Most days I feel pretty crummy. Although my quality of life has improved a lot since my asthma has been under good control with a regiment of meds that includes Xolair, I still usually feel crummy these days and generally lacking energy and motivation. > > I suspect my immune system is hyperactive. I haven't been sick with anything in two and a half years. But I break out in hives from sun exposure and I have rosacea on my face that Metrogel really doesn't seem to help. I've been tested for lupus and found not have it. > > But prednisone remains a miracle cure for all my problems. Even at 10 mg a day the hives quickly go away, the rosacea retreats, and I feel energetic and motivated. Even my peak flow measurements jump 10%. I'm a different person. In essence, I feel good. I guess you could say I'm a potential prednisone addict but, knowing better, I only take the stuff in exceptional circumstances. > > Maybe the years of the Xolair, Advair, Spriva, Zyretec regiment are not doing what they used to. I breath OK and rarely need a rescue puff of albuterol but other inflammatory conditions are cropping up. > > So I'm wondering if anyone has been on a long-term low-dose diet of prednisone, say 5 or 10 mg per day, and if this carries with it all the bad long term effects of higher doses. Any experiences with long-term low doses of predisone will be appreciated. > . > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 > > I am amazed at some of the post on this site. Its as if we all have the same body. I am still taking my Xolair and it really helps. If I am late taking it, I get the itch in my hands and legs. It is often unbearable. I have gotten rid of the skin ailments by using 100% shea butter that comes from Africa in the goads. It has made a world of difference. My husgand uses it as well. My problem is affording the copays for Xolair and all the other meds. It is costing me a fortune every month. I do my own shots and sometimes I have some to run down my arm or thigh but not a lot. It still seems to work though. Has anyone else been in the trials for Xolair? > Gwendolyn Rafter,MAOM,MBA/HRM Gewndolyn, Thanks for posting I had itching when I first started Xolair about 6 years ago but it went away after the first months of shots. I was scared I was having a reaction at first but turned out to be my (undiagnosed as of yet) psoriasis. I am quite fortunate to have a 50.00 copay a month. I am also on my wife's insurance too and use it as my secondary coverage. Both insurance cover xolair but my insurance ONLY gives a three month supply. My w3ife's insurance has a rule to only accept a one month supply for coverage. Red tape at it's finest! sigh! Glad you are having some relief. Doug Group founder AA,BME,MARE (grin) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 Doug, My husband's insurance changed from an HMO to a PPO and everything changed. Cigna use to give me a 3 month supply now Acredo only give me a one month supply for $100 per month. Cigna was $60 for a 3 month supply. Acredo says that once I get a 3 month supply for 3 months straight they will then send me a 3 month supply for $100. It can be so stressful with insurance. The disease is bad enough but they add to the stress. Gwendolyn Rafter,MAOM,MBA/HRM ________________________________ From: uca79iii <uca79iii@...> Sent: Thursday, August 27, 2009 1:23:26 PM Subject: [ ] Re: Low dose prednisone > > I am amazed at some of the post on this site. Its as if we all have the same body. I am still taking my Xolair and it really helps. If I am late taking it, I get the itch in my hands and legs. It is often unbearable. I have gotten rid of the skin ailments by using 100% shea butter that comes from Africa in the goads. It has made a world of difference. My husgand uses it as well. My problem is affording the copays for Xolair and all the other meds. It is costing me a fortune every month. I do my own shots and sometimes I have some to run down my arm or thigh but not a lot. It still seems to work though. Has anyone else been in the trials for Xolair? > Gwendolyn Rafter,MAOM, MBA/HRM Gewndolyn, Thanks for posting I had itching when I first started Xolair about 6 years ago but it went away after the first months of shots. I was scared I was having a reaction at first but turned out to be my (undiagnosed as of yet) psoriasis. I am quite fortunate to have a 50.00 copay a month. I am also on my wife's insurance too and use it as my secondary coverage. Both insurance cover xolair but my insurance ONLY gives a three month supply. My w3ife's insurance has a rule to only accept a one month supply for coverage. Red tape at it's finest! sigh! Glad you are having some relief. Doug Group founder AA,BME,MARE (grin) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 OY! The fatigue is my number one issue at this point. Leave the computer on and me alone....siesta every other hour.... I work in a prison and they sort of frown on this. Go figure! I started Xolair in January and have had only one round of pred since then, that was in February. Since then my breathing/peaks have returned to normal. Still, my fatigue was persistant. It appears now that due to the stress of the asthma my heart has enlarge to the point where I have an insufficient blood suplly. It's the same symptoms I'd have if there were a blockage, but (praise God!!!) there is no plaque, clots or anything else to block an artery. The doctors attributed everything to asthma as it is such an issue. They finally looked elsewhere and hopefully will be able to help. This is my own experience and most likely not the same for others on this list. Just food for thought. Mike McBride Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 > > Doug, My husband's insurance changed from an HMO to a PPO and everything changed. Cigna use to give me a 3 month supply now Acredo only give me a one month supply for $100 per month. Cigna was $60 for a 3 month supply. Acredo says that once I get a 3 month supply for 3 months straight they will then send me a 3 month supply for $100. It can be so stressful with insurance. The disease is bad enough but they add to the stress. > Gwendolyn Rafter,MAOM,MBA/HRM > I am a minister and have Blue Cross through the Southern Baptist Convention. The church takes money from my salary each month to pay the premiums. My wife has insurance where she works and I am on her policy also. In other words, I have secondary coverage. Doctor and hospital bills are paid at 100% and I have not had any problems, however, drugs are a whole new ball game. The church policy is my primary insurance and hers is my secondary. This includes drugs. My insurance uses Medco and hers uses Caremark. These two companies are rivals and will not work together PERIOD! I used to get 3 month supplies through Medco. Caremark will only accept a one month supply from a drug store (NOT MEDCO so instead of getting most of my meds at a 3 month supply and saving some cost, I have to get a one month supply from the local pharmacy and mail the receipt's to Caremark for reimbursement. They are paying the higher cost but hey, it's their fault. I have to use Medco FIRST in all prescriptions including Xolair. They will ONLY let me have 3 months of xolair at a time and will not let me get it one month at a time. We all know that we can't get xolair at a local pharmacy one month at a time, so that is outta the question. Caremark only accepts a ONE MONTH supply of Xolair for reimbursement and of course they don't like Medco's receipts AT ALL! Medco AND Caremark have approved my use of Xolair but because of the difference in policies and rivalry between the companies, I don't get my secondary coverage.. Talk about insurance fun LOL I can handle the 150.00 cost for 3 months of Xolair but it's nutty when we pay all those premiums for 2 insurances. I have it approved by both Medco and Caremark and I can't get reimbursed because of their silly policies. Thanks for the vent Doug AA,BME,MARE Group founder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 Hi there, Instdesign1. I've been on low dose prednisone for several years. Currently tapering back to my maintenance dosage of 7-1/2 mg per day (it used to be 8 mg per day, but the 1 mg tabs - 240 per month - were relatively expensive, so I talked my sawbones into making it 7-1/2 mg in 5 mg tabs which are scored so I can break one in half and come up with 7-1/2 mg - not exactly high tech, but it saves money). The reason I take the pred. is to keep the inflamation and irritation in my chronically infected sinuses down to a dull roar. I rarely get rid of one infection or another, not to mention ye olde fungus which hangs around up there also, so we use the pred to try to keep the sinuses open so I can flush them and they can drain. When I catch a bug and it heads straight for the sinuses, we throw some antibiotics at it and pump the pred up to about 20 mg per day. It seems to be a working system, and it beats the alternative of having the sinuses become impacted, which requires a debriding at Duke - a most unpleasant procedure. Ohldepharte ----- Original Message ----- From: instdesgn1 Sent: Wednesday, August 26, 2009 11:05 PM Subject: [ ] Re: Low dose prednisone Unfortunately even when Xolair was definitely helping the asthma and sinusitis I can't say that I felt really good. The body pains (probably arthritis) got worse. Like you, I felt tired a lot too - and still do. My rheumy also tested me for Lupus and it was negative but my inflammation is extremely high. Interestingly, my pulmo said the Plaquenil would help the allergies. I'm not so sure that it ever did but for a while - a year, say, it did help with the joint/bone/body pains. About 6 weeks ago I had a severe reaction to the Plaquenil after increasing it to the standard dose. I was just about crazy from the symptoms - sort of a toxic shock. My rheumy was out of the country and the situation was awful. Eventually I more-or-less recovered but of course the very painful arthritis returned. After waiting about 4 weeks I tried Plaquenil again and had the same reaction. Digressing a bit perhaps, I realize that asthma, sinusitis, and arthritis are all inflammatory diseases but I assume they must have a different source or mechanism of some kind. Maybe others have received asthma/allergy benefit from arthritis meds but I haven't. Some docs (one nasty dermatologist comes to mind) have arrogantly informed me that the " a " diseases such as asthma, arthritis, and allergies are all inter-related. (i.e., read " they're all emotional " ) Ok, so where's the great treatment that takes care of all of them without wrecking the mind and body. And it's not steroids! (Glumly) So, now I'm without any really good way to control asthma and allergies OR arthritis! > > Most days I feel pretty crummy. Although my quality of life has improved a lot since my asthma has been under good control with a regiment of meds that includes Xolair, I still usually feel crummy these days and generally lacking energy and motivation. > > I suspect my immune system is hyperactive. I haven't been sick with anything in two and a half years. But I break out in hives from sun exposure and I have rosacea on my face that Metrogel really doesn't seem to help. I've been tested for lupus and found not have it. > > But prednisone remains a miracle cure for all my problems. Even at 10 mg a day the hives quickly go away, the rosacea retreats, and I feel energetic and motivated. Even my peak flow measurements jump 10%. I'm a different person. In essence, I feel good. I guess you could say I'm a potential prednisone addict but, knowing better, I only take the stuff in exceptional circumstances. > > Maybe the years of the Xolair, Advair, Spriva, Zyretec regiment are not doing what they used to. I breath OK and rarely need a rescue puff of albuterol but other inflammatory conditions are cropping up. > > So I'm wondering if anyone has been on a long-term low-dose diet of prednisone, say 5 or 10 mg per day, and if this carries with it all the bad long term effects of higher doses. Any experiences with long-term low doses of predisone will be appreciated. > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 Are you sure your heart problems aren't because of taking Xolair? Meri ________________________________ From: McBride <mike.dmcbride@...> Sent: Thursday, August 27, 2009 10:51:43 AM Subject: Re: [ ] Re: Low dose prednisone OY! The fatigue is my number one issue at this point. Leave the computer on and me alone....siesta every other hour.... I work in a prison and they sort of frown on this. Go figure! I started Xolair in January and have had only one round of pred since then, that was in February. Since then my breathing/peaks have returned to normal. Still, my fatigue was persistant. It appears now that due to the stress of the asthma my heart has enlarge to the point where I have an insufficient blood suplly. It's the same symptoms I'd have if there were a blockage, but (praise God!!!) there is no plaque, clots or anything else to block an artery. The doctors attributed everything to asthma as it is such an issue. They finally looked elsewhere and hopefully will be able to help. This is my own experience and most likely not the same for others on this list. Just food for thought. Mike McBride Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2009 Report Share Posted August 29, 2009 My symptoms predated my start on Xolair. We are watching to see if they become exacerbated though. Thanks for asking. Mike McBride " Blessed is he who, with a hunger that is never satisfied, day and night throughout this present life makes prayer and the psalms his food and drink, and strengthens himself by reading of God's glory in Scripture. Such communion will lead the soul to ever-increasing joy in the age to come. " St. of Karpathos. ________________________________ From: Meri Simon <prankstermeri@...> Sent: Friday, August 28, 2009 9:49:35 AM Subject: Re: [ ] Re: Low dose prednisone Are you sure your heart problems aren't because of taking Xolair? Meri ____________ _________ _________ __ From: McBride <mike.dmcbride> Sent: Thursday, August 27, 2009 10:51:43 AM Subject: Re: [ ] Re: Low dose prednisone OY! The fatigue is my number one issue at this point. Leave the computer on and me alone....siesta every other hour.... I work in a prison and they sort of frown on this. Go figure! I started Xolair in January and have had only one round of pred since then, that was in February. Since then my breathing/peaks have returned to normal. Still, my fatigue was persistant. It appears now that due to the stress of the asthma my heart has enlarge to the point where I have an insufficient blood suplly. It's the same symptoms I'd have if there were a blockage, but (praise God!!!) there is no plaque, clots or anything else to block an artery. The doctors attributed everything to asthma as it is such an issue. They finally looked elsewhere and hopefully will be able to help. This is my own experience and most likely not the same for others on this list. Just food for thought. Mike McBride Quote Link to comment Share on other sites More sharing options...
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