Guest guest Posted March 9, 2009 Report Share Posted March 9, 2009 I should have read this also... If you aren't reacting to aspirin, but you have sinus problems and adult onset asthma, you need to go to a rheumatologist and ask about Churg Strauss Syndrome. Look it up... you may find that the diagnosis for that is a better fit. Either way, treatment with prednisone and methotrexate is probably right. But a rhuematologist will be more capable of handling your flares and proper treatment. Kate > > > > I will try to abbreviate an extensive medical history. My first > experiences with what I now understand to be Samter's Syndrome, was the > onset of a sinus infection that ended up with surgery to remove polpys. > I was 31 years old at the time. 3 sinus surgeries and 17 years later, > here I am. I was diagnosed with adult onset asthma after my 3rd > surgery, at the age of 42. > > > > I have had 2 immunologists diagnose me with Samter's, despite the fact > that to date I have not had an observable reaction to aspirin. > Although, I am currently on 81 mgs. of aspirin a day because of a severe > family history of atherosclerosis. Nobody seems to think taking me off > the aspirin would help. > > > > My condition was fairly managable, until this past year. I am a 4th > grade teacher and am constantly exposed to viruses. I could count on a > major sinus infection/flare up 2-3 times a year, which was treated with > antibiotics (usually ceftin) and prednisone. This is on top of my usual > daily dose of singulair, rhinocort (both intranasally and orally), 2400 > mg. of guaifenesin, and saline nasal wash. > > > > Well, that worked until I had a flare up last August, and it hasn't > quit. I have been on multiple rounds of antibiotics and increasing > doses of prednisone. As soon as I quit taking the prednisone, the > inflammation is back. I have constant headaches and my face is > obviously swollen. Some days it is so bad, I just have to go to bed and > stay there. My entire body hurts at this point. > > > > I traveled and hour and a half to a new immunologist in a major city > near me, and he has now put me on a low dose of methotrexate (15 mg. > once a week), along with folic acid. I am not exicited about being on > low dose chemotherapy, or the blood tests I have to get every 2 weeks. > He doesn't seem to think I have an infection, just chronic inflammation. > > > > I have had 2 rounds of allergy testing, and I don't have allergies. I > have had all kinds of blood work and urinalysis, and I don't appear to > have any other immune system disorders. I have now been to see 4 > immunologists, 3 Ear, Nose and Throat Physicians, and have had multiple > CT's and MRI's. > > > > Does this match up with anyone else's experiences? Do you have any > suggestions? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2009 Report Share Posted March 9, 2009 Thank you all for the responses. Yes, I think I probably should see a rheumatologist. I have thought about it before, but when my ENT and GP suggested I go to the University of Washington to see an immunologist, I took that course. I live in northern Washington, about 4 miles from Canada. Seattle is about an hour and a half drive south of here. Does anybody have any recommendations for docs in this area? > > > > > > I will try to abbreviate an extensive medical history. My first > > experiences with what I now understand to be Samter's Syndrome, was the > > onset of a sinus infection that ended up with surgery to remove polpys. > > I was 31 years old at the time. 3 sinus surgeries and 17 years later, > > here I am. I was diagnosed with adult onset asthma after my 3rd > > surgery, at the age of 42. > > > > > > I have had 2 immunologists diagnose me with Samter's, despite the fact > > that to date I have not had an observable reaction to aspirin. > > Although, I am currently on 81 mgs. of aspirin a day because of a severe > > family history of atherosclerosis. Nobody seems to think taking me off > > the aspirin would help. > > > > > > My condition was fairly managable, until this past year. I am a 4th > > grade teacher and am constantly exposed to viruses. I could count on a > > major sinus infection/flare up 2-3 times a year, which was treated with > > antibiotics (usually ceftin) and prednisone. This is on top of my usual > > daily dose of singulair, rhinocort (both intranasally and orally), 2400 > > mg. of guaifenesin, and saline nasal wash. > > > > > > Well, that worked until I had a flare up last August, and it hasn't > > quit. I have been on multiple rounds of antibiotics and increasing > > doses of prednisone. As soon as I quit taking the prednisone, the > > inflammation is back. I have constant headaches and my face is > > obviously swollen. Some days it is so bad, I just have to go to bed and > > stay there. My entire body hurts at this point. > > > > > > I traveled and hour and a half to a new immunologist in a major city > > near me, and he has now put me on a low dose of methotrexate (15 mg. > > once a week), along with folic acid. I am not exicited about being on > > low dose chemotherapy, or the blood tests I have to get every 2 weeks. > > He doesn't seem to think I have an infection, just chronic inflammation. > > > > > > I have had 2 rounds of allergy testing, and I don't have allergies. I > > have had all kinds of blood work and urinalysis, and I don't appear to > > have any other immune system disorders. I have now been to see 4 > > immunologists, 3 Ear, Nose and Throat Physicians, and have had multiple > > CT's and MRI's. > > > > > > Does this match up with anyone else's experiences? Do you have any > > suggestions? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 I think Kate has had a good insight, your symptoms (asthma, polyps, cardiovascular disease, no aspirin sensitivity) do fit better Churg-Strauss Syndrome than Samter's. And methotrexate is part of the CSS treatment. Now, you need to find a CSS specialist in the Seattle area to check this hypothesis, or at least a good rhumatologist.A blood test would show hypereosinphilia, but that would not be enough to differentiate it from severe Samter's, which also displays some hypereosinophilia, so someone familiar with CSS could be useful.Now, don't take this for granted because we are not doctors and may be totally in error, but do investigate by yourself ; for instance, document the cardiovascular symptoms of your family ; maybe that could be of some help in the diagnosis.--------------------------------From : http://www.cssassociation.org/default.aspSee also : http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN & data_id=745 & Disease_Disease_Search_diseaseGroup=churg-strauss & Disease_Disease_Search_diseaseType=Pat & Disease(s)%20concerned=Churg-Strauss-syndrome & title=Churg-Strauss-syndrome & search=Disease_Search_SimpleWhat is Churg Strauss Syndrome? Churg Strauss Syndrome is a rare systemic autoimmune disease characterized by inflammation of small to medium sized arteries, arterioles and venules. This inflammatory process of blood vessels is more commonly known as vasculitis. Churg Strauss vasculitis is characterized by the invasion and abnormal increase of a white blood cell known as an eosinophil. The eosinophils cluster together and release harmful granules that collect in different parts of the body as inflammatory nodule lesions. This is called granulomatosis. This eosinophilic inflammation, along with asthma, are the hallmarks of Churg Strauss Syndrome. The inflammatory process can cause impaired blood flow to various organ systems. The resultant damage to different organs may be temporary or permanent. Churg Strauss Syndrome should be considered when there is late onset asthma, or worsening asthma, along with either numbness or pain in the extremities, sinus problems, a lingering cough, a rash, stomach problems, or symptoms of cardiac involvement. The American College of Rheumatology established the following criteria for diagnosing CSS: Asthma Eosinophilia >10% Neuropathy, mono or poly Pulmonary infiltrates, non-fixed Paranasal sinus abnormality Extravascular eosinophils For classification purposes, a patient is said to have Churg Strauss syndrome if at least 4 of these 6 criteria are positive. Some researchers believe that early cases of CSS may consist of asthma and tissue eosinophilia without detectable vasculitis. If caught early, CSS is more responsive to corticosteroids, while cases with full-blown vasculitis may require the addition of more powerful immunosuppressive drugs. Unfortunately, early stage CSS is often under-diagnosed. Churg Strauss is a baffling disorder that is difficult to diagnose and one whose effects vary widely from patient to patient. Some people have mild symptoms which barely affect day to day living while others suffer from a wide variety of problems including sinus problems, rashes, lung involvement, peripheral neuropathy, gastrointestinal problems and heart involvement. CSS is not contagious and is not inherited. Its cause is unknown. There is no cure, but many people achieve long term remissions. It affects men slightly more than women. It can affect people of all ages with the average age at diagnosis being 35 to 45. Estimates about the incidence of CSS vary widely and range from 2.4 to 10 cases per 1 million people, or roughly from 720 to 3,000 people in the United States. CSS was almost always a fatal disease until the discovery of effective drug therapy. Treatment consists of quieting the inflammation of the blood vessels and suppressing the immune system. Corticosteroids are usually the initial therapy. For those with more severe, life threatening complications, or those who fail to respond to steroids alone, cytotoxic drugs may be added. Side effects and drug toxicity need to be carefully monitored during treatment. The chief causes of mortality are severe asthma, cardiopulmonary failure, or gastrointestinal complications. With prompt diagnosis and treatment many people achieve at least medically maintained remission, although some may experience occasional flares. Because there is no cure for CSS and relapses, or flares, are common it is very important that the disease be carefully monitored by a physician with regularly scheduled lab tests even while in remission. CSS may present differently during a flare than when first diagnosed, so any new symptoms should be reported promptly. CSS is a chronic and sometimes life threatening disease, but with diligence and effective medical care most patients enjoy a very good quality of life.> > > >> > > > I will try to abbreviate an extensive medical history. My first> > > experiences with what I now understand to be Samter's Syndrome, was the> > > onset of a sinus infection that ended up with surgery to remove polpys. > > > I was 31 years old at the time. 3 sinus surgeries and 17 years later,> > > here I am. I was diagnosed with adult onset asthma after my 3rd> > > surgery, at the age of 42.> > > >> > > > I have had 2 immunologists diagnose me with Samter's, despite the fact> > > that to date I have not had an observable reaction to aspirin. > > > Although, I am currently on 81 mgs. of aspirin a day because of a severe> > > family history of atherosclerosis. Nobody seems to think taking me off> > > the aspirin would help.> > > >> > > > My condition was fairly managable, until this past year. I am a 4th> > > grade teacher and am constantly exposed to viruses. I could count on a> > > major sinus infection/flare up 2-3 times a year, which was treated with> > > antibiotics (usually ceftin) and prednisone. This is on top of my usual> > > daily dose of singulair, rhinocort (both intranasally and orally), 2400> > > mg. of guaifenesin, and saline nasal wash.> > > >> > > > Well, that worked until I had a flare up last August, and it hasn't> > > quit. I have been on multiple rounds of antibiotics and increasing> > > doses of prednisone. As soon as I quit taking the prednisone, the> > > inflammation is back. I have constant headaches and my face is> > > obviously swollen. Some days it is so bad, I just have to go to bed and> > > stay there. My entire body hurts at this point.> > > >> > > > I traveled and hour and a half to a new immunologist in a major city> > > near me, and he has now put me on a low dose of methotrexate (15 mg.> > > once a week), along with folic acid. I am not exicited about being on> > > low dose chemotherapy, or the blood tests I have to get every 2 weeks. > > > He doesn't seem to think I have an infection, just chronic inflammation.> > > >> > > > I have had 2 rounds of allergy testing, and I don't have allergies. I> > > have had all kinds of blood work and urinalysis, and I don't appear to> > > have any other immune system disorders. I have now been to see 4> > > immunologists, 3 Ear, Nose and Throat Physicians, and have had multiple> > > CT's and MRI's.> > > >> > > > Does this match up with anyone else's experiences? Do you have any> > > suggestions?> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 I live in Southwest Washington. Sounds like you are in Blaine or Ferndale? Many years ago I lived in Seattle and had a wonderful ENT in Federal Way that diagnosed Samters early on. Dr Dhaval Druh (?) Not sure if he's still around...OSHU in Portland does aspirin desensitization (Dr. ) if you are interested in that. I'm not convinced that's the answer for me, but some do seem to have some success.I suspect a fungal component from the Western Washington climate. You can get pollen AND mold spore counts from http://www.aaaai.org/nab/index.cfm. I think you'll find it enlightening.Good Luck. From: gongfy79 <gongfy79@...>Subject: Re: Newcomer--CSS!!samters Date: Monday, March 9, 2009, 5:47 PMThank you all for the responses. Yes, I think I probably should see arheumatologist. I have thought about it before, but when my ENT and GPsuggested I go to the University of Washington to see an immunologist, I tookthat course. I live in northern Washington, about 4 miles from Canada. Seattleis about an hour and a half drive south of here. Does anybody have anyrecommendations for docs in this area?> > >> > > I will try to abbreviate an extensive medical history. My first> > experiences with what I now understand to be Samter's Syndrome,was the> > onset of a sinus infection that ended up with surgery to removepolpys. > > I was 31 years old at the time. 3 sinus surgeries and 17 yearslater,> > here I am. I was diagnosed with adult onset asthma after my 3rd> > surgery, at the age of 42.> > >> > > I have had 2 immunologists diagnose me with Samter's,despite the fact> > that to date I have not had an observable reaction to aspirin. > > Although, I am currently on 81 mgs. of aspirin a day because of asevere> > family history of atherosclerosis. Nobody seems to think taking meoff> > the aspirin would help.> > >> > > My condition was fairly managable, until this past year. I am a4th> > grade teacher and am constantly exposed to viruses. I could count ona> > major sinus infection/flare up 2-3 times a year, which was treatedwith> > antibiotics (usually ceftin) and prednisone. This is on top of myusual> > daily dose of singulair, rhinocort (both intranasally and orally),2400> > mg. of guaifenesin, and saline nasal wash.> > >> > > Well, that worked until I had a flare up last August, and ithasn't> > quit. I have been on multiple rounds of antibiotics and increasing> > doses of prednisone. As soon as I quit taking the prednisone, the> > inflammation is back. I have constant headaches and my face is> > obviously swollen. Some days it is so bad, I just have to go to bedand> > stay there. My entire body hurts at this point.> > >> > > I traveled and hour and a half to a new immunologist in a majorcity> > near me, and he has now put me on a low dose of methotrexate (15 mg.> > once a week), along with folic acid. I am not exicited about beingon> > low dose chemotherapy, or the blood tests I have to get every 2weeks. > > He doesn't seem to think I have an infection, just chronicinflammation.> > >> > > I have had 2 rounds of allergy testing, and I don't haveallergies. I> > have had all kinds of blood work and urinalysis, and I don'tappear to> > have any other immune system disorders. I have now been to see 4> > immunologists, 3 Ear, Nose and Throat Physicians, and have hadmultiple> > CT's and MRI's.> > >> > > Does this match up with anyone else's experiences? Do youhave any> > suggestions?> > >> >>------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Thanks. I live in Lynden. I have asked about the fungal thing and have been told no, that is not my problem. > > > > > > > > I will try to abbreviate an extensive medical history. My first > > > experiences with what I now understand to be Samter's Syndrome, > was the > > > onset of a sinus infection that ended up with surgery to remove > polpys. > > > I was 31 years old at the time. 3 sinus surgeries and 17 years > later, > > > here I am. I was diagnosed with adult onset asthma after my 3rd > > > surgery, at the age of 42. > > > > > > > > I have had 2 immunologists diagnose me with Samter's, > despite the fact > > > that to date I have not had an observable reaction to aspirin. > > > Although, I am currently on 81 mgs. of aspirin a day because of a > severe > > > family history of atherosclerosis. Nobody seems to think taking me > off > > > the aspirin would > help. > > > > > > > > My condition was fairly managable, until this past year. I am a > 4th > > > grade teacher and am constantly exposed to viruses. I could count on > a > > > major sinus infection/flare up 2-3 times a year, which was treated > with > > > antibiotics (usually ceftin) and prednisone. This is on top of my > usual > > > daily dose of singulair, rhinocort (both intranasally and orally), > 2400 > > > mg. of guaifenesin, and saline nasal wash. > > > > > > > > Well, that worked until I had a flare up last August, and it > hasn't > > > quit. I have been on multiple rounds of antibiotics and increasing > > > doses of prednisone. As soon as I quit taking the prednisone, the > > > inflammation is back. I have constant headaches and my face is > > > obviously swollen. Some days it is so bad, I just have to go to bed > and > > > > stay there. My entire body hurts at this point. > > > > > > > > I traveled and hour and a half to a new immunologist in a major > city > > > near me, and he has now put me on a low dose of methotrexate (15 mg. > > > once a week), along with folic acid. I am not exicited about being > on > > > low dose chemotherapy, or the blood tests I have to get every 2 > weeks. > > > He doesn't seem to think I have an infection, just chronic > inflammation. > > > > > > > > I have had 2 rounds of allergy testing, and I don't have > allergies. I > > > have had all kinds of blood work and urinalysis, and I don't > appear to > > > have any other immune system disorders. I have now been to see 4 > > > immunologists, 3 Ear, Nose and Throat Physicians, and have had > multiple > > > CT's and MRI's. > > > > > > > > Does this match up with anyone > else's experiences? Do you > have any > > > suggestions? > > > > > > > > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Thank you for your responses. It does bear looking into. Although, I don't think the cardio stuff is related to the Samter's. Nobody in my family has the sinus issues. However, my dad was completely disabled at 36 and died at 55 from complications during a heart transplant. I have two younger brothers (36 and 42) who have already had heart attacks and stints. This is just one of those genetic atherosclerosis things. > > > > > > > > > > I will try to abbreviate an extensive medical history. My first > > > > experiences with what I now understand to be Samter's Syndrome, > was the > > > > onset of a sinus infection that ended up with surgery to remove > polpys. > > > > I was 31 years old at the time. 3 sinus surgeries and 17 years > later, > > > > here I am. I was diagnosed with adult onset asthma after my 3rd > > > > surgery, at the age of 42. > > > > > > > > > > I have had 2 immunologists diagnose me with Samter's, despite > the fact > > > > that to date I have not had an observable reaction to aspirin. > > > > Although, I am currently on 81 mgs. of aspirin a day because of a > severe > > > > family history of atherosclerosis. Nobody seems to think taking > me off > > > > the aspirin would help. > > > > > > > > > > My condition was fairly managable, until this past year. I am a > 4th > > > > grade teacher and am constantly exposed to viruses. I could count > on a > > > > major sinus infection/flare up 2-3 times a year, which was treated > with > > > > antibiotics (usually ceftin) and prednisone. This is on top of my > usual > > > > daily dose of singulair, rhinocort (both intranasally and orally), > 2400 > > > > mg. of guaifenesin, and saline nasal wash. > > > > > > > > > > Well, that worked until I had a flare up last August, and it > hasn't > > > > quit. I have been on multiple rounds of antibiotics and > increasing > > > > doses of prednisone. As soon as I quit taking the prednisone, the > > > > inflammation is back. I have constant headaches and my face is > > > > obviously swollen. Some days it is so bad, I just have to go to > bed and > > > > stay there. My entire body hurts at this point. > > > > > > > > > > I traveled and hour and a half to a new immunologist in a major > city > > > > near me, and he has now put me on a low dose of methotrexate (15 > mg. > > > > once a week), along with folic acid. I am not exicited about > being on > > > > low dose chemotherapy, or the blood tests I have to get every 2 > weeks. > > > > He doesn't seem to think I have an infection, just chronic > inflammation. > > > > > > > > > > I have had 2 rounds of allergy testing, and I don't have > allergies. I > > > > have had all kinds of blood work and urinalysis, and I don't > appear to > > > > have any other immune system disorders. I have now been to see 4 > > > > immunologists, 3 Ear, Nose and Throat Physicians, and have had > multiple > > > > CT's and MRI's. > > > > > > > > > > Does this match up with anyone else's experiences? Do you have > any > > > > suggestions? > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Thank you for your responses. It does bear looking into. Although, I don't think the cardio stuff is related to the Samter's. Nobody in my family has the sinus issues. However, my dad was completely disabled at 36 and died at 55 from complications during a heart transplant. I have two younger brothers (36 and 42) who have already had heart attacks and stints. This is just one of those genetic atherosclerosis things. > > > > > > > > > > I will try to abbreviate an extensive medical history. My first > > > > experiences with what I now understand to be Samter's Syndrome, > was the > > > > onset of a sinus infection that ended up with surgery to remove > polpys. > > > > I was 31 years old at the time. 3 sinus surgeries and 17 years > later, > > > > here I am. I was diagnosed with adult onset asthma after my 3rd > > > > surgery, at the age of 42. > > > > > > > > > > I have had 2 immunologists diagnose me with Samter's, despite > the fact > > > > that to date I have not had an observable reaction to aspirin. > > > > Although, I am currently on 81 mgs. of aspirin a day because of a > severe > > > > family history of atherosclerosis. Nobody seems to think taking > me off > > > > the aspirin would help. > > > > > > > > > > My condition was fairly managable, until this past year. I am a > 4th > > > > grade teacher and am constantly exposed to viruses. I could count > on a > > > > major sinus infection/flare up 2-3 times a year, which was treated > with > > > > antibiotics (usually ceftin) and prednisone. This is on top of my > usual > > > > daily dose of singulair, rhinocort (both intranasally and orally), > 2400 > > > > mg. of guaifenesin, and saline nasal wash. > > > > > > > > > > Well, that worked until I had a flare up last August, and it > hasn't > > > > quit. I have been on multiple rounds of antibiotics and > increasing > > > > doses of prednisone. As soon as I quit taking the prednisone, the > > > > inflammation is back. I have constant headaches and my face is > > > > obviously swollen. Some days it is so bad, I just have to go to > bed and > > > > stay there. My entire body hurts at this point. > > > > > > > > > > I traveled and hour and a half to a new immunologist in a major > city > > > > near me, and he has now put me on a low dose of methotrexate (15 > mg. > > > > once a week), along with folic acid. I am not exicited about > being on > > > > low dose chemotherapy, or the blood tests I have to get every 2 > weeks. > > > > He doesn't seem to think I have an infection, just chronic > inflammation. > > > > > > > > > > I have had 2 rounds of allergy testing, and I don't have > allergies. I > > > > have had all kinds of blood work and urinalysis, and I don't > appear to > > > > have any other immune system disorders. I have now been to see 4 > > > > immunologists, 3 Ear, Nose and Throat Physicians, and have had > multiple > > > > CT's and MRI's. > > > > > > > > > > Does this match up with anyone else's experiences? Do you have > any > > > > suggestions? > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 If no one in your family ever had sinus, asthma or airways allergies issues and you don't react to aspirin or NSAIDS, then you are in serious right to doubt a Samter's diagnosis. On the other hand, since sinus issus, asthma, polyps, and cardiovascular problems happen to be among the symptoms of CSS, you might pursue that avenue just to check. Needless to say, eating healthy food is essential (low in bad sugars, low in bad fats, preferably mediterranean-style, rich in vegetables and fruits, enough daily water).Also, since you take several drugs, checking regularly the liver function is necessary.Moderate vitamin E and vitamin C supplementations are advised in inflammatory diseases such as asthma. Vitamin D can help innate immunity, but check your blood levels bedore supplementing.Coenzyme-Q10 (ubiquinone or equivalent) has been tested for a number of years against heart condition, is safe, and is gaining popularity. Have a look at the following abstracts (which are just a sample of what you can find).Now, I cannot guarantee that CoQ10 will not worsen the polyps because it provides better mitochondrial (cell energy) function, but on the other hand it reduces one of the inflammatory pathways (NF-kappaB), so it's not easy to tell what it would do or not do to polyps, and you would have to experiment and see for yourself.------------------------- Diabetes Care. 2009 Feb 19. [Epub ahead of print] Links COENZYME Q10 IMPROVES ENDOTHELIAL DYSFUNCTION IN STATIN-TREATED TYPE 2 DIABETIC PATIENTS. Hamilton SJ, Chew GT, Watts GF. School of Medicine and Pharmacology, University of Western Australia, Royal Perth Hospital Unit, Perth, Western Australia, AUSTRALIA. Objective: The vascular benefits of statins might be attenuated by inhibition of Coenzyme Q(10) (CoQ(10)) synthesis. We investigated whether oral CoQ(10) supplementation improves endothelial dysfunction in statin-treated type 2 diabetic patients. Research Design and Methods: In a crossover study, 23 statin-treated type 2 diabetic patients with LDL-cholesterol <2.5mmol/L and endothelial dysfunction (brachial artery flow-mediated dilatation (FMD) <5.5%) were randomized, double-blind, to oral CoQ(10) 200mg/day or placebo for 12 weeks. We measured brachial artery FMD and nitrate-mediated dilatation (NMD) by ultrasonography. Plasma F(2)-isoprostane and 24-hour urinary 20-hydroxyeicosatetraenoic acid (HETE) levels were measured as systemic oxidative stress markers. Results: Compared with placebo, CoQ(10) supplementation increased brachial artery FMD by 1.0 +/- 0.5% (p=0.04), but did not alter NMD (p=0.66). CoQ(10) supplementation also did not alter plasma F(2)-isoprostane (p=0.58) or urinary 20-HETE levels (p=0.28). Conclusions: CoQ(10) supplementation improved endothelial dysfunction in statin-treated type 2 diabetic patients, possibly by altering local vascular oxidative stress.------- Ann Pharmacother. 2005 Sep;39(9):1522-6. Epub 2005 Jul 26. Links The role of coenzyme Q10 in heart failure. Weant KA, KM. University of Kentucky Chandler Medical Center, Lexington, KY 40536-0293, USA. OBJECTIVE: To review the clinical data demonstrating the safety and efficacy of coenzyme Q10 (CoQ10) in heart failure (HF). DATA SOURCES: Pertinent literature was identified through MEDLINE (1966-January 2005) using the search terms coenzyme Q10, heart failure, antioxidants, and oxidative stress. Only articles written in the English language and evaluating human subjects were used. DATA SYNTHESIS: HF impairs the ability of the heart to maintain its normal cardiac output. Following an initial insult, cardiac remodeling ensues, resulting in left ventricular dilation and hypertrophy. Oxidative stress is also increased, while CoQ10 levels are decreased in patients with HF. This has led to the hypothesis that CoQ10, an antioxidant, may decrease oxidative stress, impair remodeling, and improve cardiac function. CONCLUSIONS: Large, well-designed studies on this topic are lacking. The limited data from well-designed trials indicate there may be some minor benefits with CoQ10 therapy in ejection fraction and end diastolic volume. CoQ10 therapy has been shown to be relatively safe with a low incidence of adverse effects.---------------------------Nutr Clin Pract. 2009 Feb-Mar;24(1):60-75. Links Nutrition and heart failure: impact of drug therapies and management strategies. Dunn SP, Bleske B, Dorsch M, Macaulay T, Van Tassell B, Vardeny O. Department of Pharmacy Services, University of Kentucky, 800 Rose Street, Rm H-112B, Lexington, KY 40536-0293, USA. sdunn3@... Nutrition impairment commonly occurs in patients with heart failure and affects disease progression. Vitamin and mineral deficiencies are associated with early mortality, particularly in patients classified as cachectic. Guideline-based therapies approved for heart failure, such as loop diuretics, angiotensin-converting enzyme inhibitors and angiotensin receptor blockers, aldosterone antagonists, and beta-adrenergic blockers, can lead to electrolyte abnormalities and predispose to some vitamin and micronutrient deficits. Clinical trial evidence in support of supplementary vitamin and mineral therapies for heart failure patients is limited with the exception of documented calcium and possibly vitamin D, thiamine, and coenzyme Q10 deficiencies. This area is gaining significant attention, and research is ongoing. The clinician can help minimize morbidity from nutrition impairment through appropriate monitoring and correction of baseline and medication-induced electrolyte imbalances, in addition to vitamin and mineral supplementation when appropriate.--------------------------- Biofactors. 2008;32(1-4):199-208. Links Safety assessment of coenzyme Q10 (CoQ10). Hidaka T, Fujii K, Funahashi I, Fukutomi N, Hosoe K. Functional Food Ingredients Division, Healthcare Products Business Unit, Kaneka Corporation, Osaka, Japan. Coenzyme Q10 (CoQ10) is a naturally occurring component present in living cells. Its physiological function is to act as an essential cofactor for ATP production, and to perform important antioxidant activities in the body. In most countries, CoQ10 has been widely used as a dietary supplement for more than 20 years. Recently, the use of CoQ10 as a dietary supplement has grown with a corresponding increase in daily dosage. The present review describes the safety profile of CoQ10 on the basis of animal and human data. The published reports concerning safety studies indicate that CoQ10 has low toxicity and does not induce serious adverse effects in humans. The acceptable daily intake (ADI) is 12mg/kg/day, calculated from the no-observed-adverse-effect level (NOAEL) of 1200 mg/kg/day derived from a 52-week chronic toxicity study in rats, i.e., 720 mg/day for a person weighing 60 kg. Risk assessment for CoQ10 based on various clinical trial data indicates that the observed safety level (OSL) for CoQ10 is 1200 mg/day/person. Evidence from pharmacokinetic studies suggest that exogenous CoQ10 does not influence the biosynthesis of endogenous CoQ9/CoQ10 nor does it accumulate into plasma or tissues after cessation of supplementation. Overall, these data from preclinical and clinical studies indicate that CoQ10 is highly safe for use as a dietary supplement. Additionally, analysis of CoQ10 bioavailability or its pharmacokinetics provides the pertinent safety evaluation for CoQ10.---------------------- Biofactors. 2008;32(1-4):179-83. Links Functions of coenzyme Q10 in inflammation and gene expression. Schmelzer C, Lindner I, Rimbach G, Niklowitz P, Menke T, Döring F. Institute of Human Nutrition and Food Science, Molecular Nutrition, Christian-Albrechts-University of Kiel, Germany. Clinical studies demonstrated the efficacy of Coenzyme Q10 (CoQ10) as an adjuvant therapeutic in cardiovascular diseases, mitochondrial myopathies and neurodegenerative diseases. More recently, expression profiling revealed that Coenzyme Q10 (CoQ10) influences the expression of several hundred genes. To unravel the functional connections of these genes, we performed a text mining approach using the Genomatix BiblioSphere. We identified signalling pathways of G-protein coupled receptors, JAK/STAT, and Integrin which contain a number of CoQ10 sensitive genes. Further analysis suggested that IL5, thrombin, vitronectin, vitronectin receptor, and C-reactive protein are regulated by CoQ10 via the transcription factor NFkappaB1. To test this hypothesis, we studied the effect of CoQ10 on the NFkappaB1-dependent pro-inflammatory cytokine TNF-alpha. As a model, we utilized the murine macrophage cell lines RAW264.7 transfected with human apolipoprotein E3 (apoE3, control) or pro-inflammatory apoE4. In the presence of 2.5 microM or 75 microM CoQ10 the LPS-induced TNF-alpha response was significantly reduced to 73.3 +/- 2.8% and 74.7 +/- 8.9% in apoE3 or apoE4 cells, respectively. Therefore, the in silico analysis as well as the cell culture experiments suggested that CoQ10 exerts anti-inflammatory properties via NFkappaB1-dependent gene expression.------------------------------- Biofactors. 2008;32(1-4):119-28. Links Supplemental ubiquinol in patients with advanced congestive heart failure. Langsjoen PH, Langsjoen AM. East Texas Medical Center and Trinity Mother Francis Hospital, TX, USA. alilangsjoen@... Patients with CHF, NYHA class IV, often fail to achieve adequate plasma CoQ10 levels on supplemental ubiquinone at dosages up to 900 mg/day. These patients often have plasma total CoQ10 levels of less than 2.5 microg/ml and have limited clinical improvement. It is postulated that the intestinal edema in these critically ill patients may impair CoQ10 absorption. We identified seven patients with advanced CHF (mean EF 22%) with sub-therapeutic plasma CoQ10 levels with mean level of 1.6 microg/ml on an average dose of 450 mg of ubiquinone daily (150-600 mg/day). All seven of these patients were changed to an average of 580 mg/day of ubiquinol (450-900 mg/day) with follow-up plasma CoQ10 levels, clinical status, and EF measurements by echocardiography. Mean plasma CoQ10 levels increased from 1.6 microg/ml (0.9-2.0 microg/ml) up to 6.5 microg/ml (2.6-9.3 microg/ml). Mean EF improved from 22% (10-35%) up to 39% (10-60%) and clinical improvement has been remarkable with NYHA class improving from a mean of IV to a mean of II (I to III). Ubiquinol has dramatically improved absorption in patients with severe heart failure and the improvement in plasma CoQ10 levels is correlated with both clinical improvement and improvement in measurement of left ventricular function.-----------------------------> > > > > >> > > > > > I will try to abbreviate an extensive medical history. My first> > > > > experiences with what I now understand to be Samter's Syndrome,> > was the> > > > > onset of a sinus infection that ended up with surgery to remove> > polpys.> > > > > I was 31 years old at the time. 3 sinus surgeries and 17 years> > later,> > > > > here I am. I was diagnosed with adult onset asthma after my 3rd> > > > > surgery, at the age of 42.> > > > > >> > > > > > I have had 2 immunologists diagnose me with Samter's, despite> > the fact> > > > > that to date I have not had an observable reaction to aspirin.> > > > > Although, I am currently on 81 mgs. of aspirin a day because of a> > severe> > > > > family history of atherosclerosis. Nobody seems to think taking> > me off> > > > > the aspirin would help.> > > > > >> > > > > > My condition was fairly managable, until this past year. I am a> > 4th> > > > > grade teacher and am constantly exposed to viruses. I could count> > on a> > > > > major sinus infection/flare up 2-3 times a year, which was treated> > with> > > > > antibiotics (usually ceftin) and prednisone. This is on top of my> > usual> > > > > daily dose of singulair, rhinocort (both intranasally and orally),> > 2400> > > > > mg. of guaifenesin, and saline nasal wash.> > > > > >> > > > > > Well, that worked until I had a flare up last August, and it> > hasn't> > > > > quit. I have been on multiple rounds of antibiotics and> > increasing> > > > > doses of prednisone. As soon as I quit taking the prednisone, the> > > > > inflammation is back. I have constant headaches and my face is> > > > > obviously swollen. Some days it is so bad, I just have to go to> > bed and> > > > > stay there. My entire body hurts at this point.> > > > > >> > > > > > I traveled and hour and a half to a new immunologist in a major> > city> > > > > near me, and he has now put me on a low dose of methotrexate (15> > mg.> > > > > once a week), along with folic acid. I am not exicited about> > being on> > > > > low dose chemotherapy, or the blood tests I have to get every 2> > weeks.> > > > > He doesn't seem to think I have an infection, just chronic> > inflammation.> > > > > >> > > > > > I have had 2 rounds of allergy testing, and I don't have> > allergies. I> > > > > have had all kinds of blood work and urinalysis, and I don't> > appear to> > > > > have any other immune system disorders. I have now been to see 4> > > > > immunologists, 3 Ear, Nose and Throat Physicians, and have had> > multiple> > > > > CT's and MRI's.> > > > > >> > > > > > Does this match up with anyone else's experiences? Do you have> > any> > > > > suggestions?> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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