Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 Hi Bettie, Sinus issues and cough seem to go with cll/sll - me too and I've had no treatment to date, other than IVIG. CLL seems to show it's ugly symptoms in varying orders. I presented with huge sinus and bronchial problems prior to diagnosis, so can't say if or what any treatment has to do with this element. I had been on flonase (and others of that ilk) and advair for years prior to dx and went off of them since I worried about using steroids of any sort with the endless scripts for levaquin I was being given.(FDA warnings are posted on this specifically) I now take neither of those, nor any levaquin and have had fewer problems. I had been put on those for chronic bronchitis, but that too has become much less of a problem now. I had read on clltopics about singulaire being used for cll, so requested that, (this drug works on leukotreins sp? and that has something to do with inflamatory reactions) and I also take allegra and guifinex (over the counter) and have added elixophyllin, (theophyllin elixer - theophyllin has also been studied in cll) With this protocol I have had many fewer problems. (theophyllin can make one a bit racy so dosing has to be worked on and blood tests done every few months, but it's an old drug that's been working for years, it's basically a broncho dilator which has been supplanted by all the new steriod drugs, but still works! It's action in cll has been studied and one of my doctors gave me the abstract) my stuffiness is worst in the am, but once I get those pills and the elixophyllin (liquid) in me,(my doctor and I call it draino) and take a quick warm shower I'm pretty good for the day. On the occasion that one or another sinus becomes stuffed and painful I use magnets. Locate the offending sinus by pressing on it, and place the dot or two on top. Magnadots are very small magnet that come on bandaid type patches, they're available on line and in most rite aid stores. the magnets are reusable, the dots get replaced after a couple of days as they wear off. one can shower with them etc. (these are also very helpful for any sort of pain that is localized, ie tooth, jaw, knee, shoulder etc) I find that the stuffed sinus begins to clear within about 20 minutes, but I keep them on for a few days. It looks strange, but it works. it's cheap, and effective and no side effects. basic technique for using the magnetic dots is to find the 'ouch spot' by applying finger pressure. place the dot where it hurts the most. If it's a larger area use several. I think that's what's called a trigger point. light application to a general area will not be as effective. press on the center of the dot for a few seconds and then massage the adhesive to make it stick. Throat sprays work for dryness, as do some hard candies, sugarless of not as you prefer. Biotene mouth wash is recomended for dry mouth. From what I can tell there's no end to this, but good management can go a long way. These have worked for me. Might want to read up on some and then ask your doctor. Mine were willing to work with me to get this annoying piece of cll at least put in the background. I still carry kleenex with me and don't sing much except in the shower, but at least the most annoying, and most of the infections are in the past, for now. all the best - beth fillman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 Beth, That is a lot of information, but seemingly very valuable to those of us who deal with sinusitis, etc. I sing in my church choir and find that there is always some need to clear the throat, etc., just before singing another anthem. The drainage doesn't bother too much in my daily activities, however. I just deal with it. The magnadots sound great, however I have a pacemaker and don't get involved with any magnets if I can avoid them. I also used Flonase and Advair for quite some time before my dx and tx in 2005/06, having been diagnosed by a pulmonary specialist as having COPD. However, after treatment with Rituxan, I no longer had the breathing problems that had plagued me day and night. Cancer, and the treatment of it, took care of that. I can now hold a note for sixteen counts at the end of an anthem, without difficulty, IF I CAN HIT THE NOTE without clearing my throat again, to get the drainage away from my vocal chords. ( I just did that this morning.) I certainly thank you for sharing of the information from those who have posted on this; one thinks one is the only one who is dealing with this malady, when there are many, and seemingly a good reason for it. Thanks a bundle, everyone!!! A Happy and Blessed 2010! Norma Oxley dx 12/05; tx w/6 weekly infusions of Rituxan 2/06 to 3/06. So far, so good. In a message dated 1/3/2010 9:11:05 A.M. US Mountain Standard Time, bethcat@... writes: Hi Bettie,Sinus issues and cough seem to go with cll/sll - me too and I've had no treatment to date, other than IVIG. CLL seems to show it's ugly symptoms in varying orders. I presented with huge sinus and bronchial problems prior to diagnosis, so can't say if or what any treatment has to do with this element. I had been on flonase (and others of that ilk) and advair for years prior to dx and went off of them since I worried about using steroids of any sort with the endless scripts for levaquin I was being given.(FDA warnings are posted on this specifically) I now take neither of those, nor any levaquin and have had fewer problems. I had been put on those for chronic bronchitis, but that too has become much less of a problem now. I had read on clltopics about singulaire being used for cll, so requested that, (this drug works on leukotreins sp? and that has something to do with inflamatory reactions) and I also take allegra and guifinex (over the counter) and have added elixophyllin, (theophyllin elixer - theophyllin has also been studied in cll) With this protocol I have had many fewer problems. (theophyllin can make one a bit racy so dosing has to be worked on and blood tests done every few months, but it's an old drug that's been working for years, it's basically a broncho dilator which has been supplanted by all the new steriod drugs, but still works! It's action in cll has been studied and one of my doctors gave me the abstract)my stuffiness is worst in the am, but once I get those pills and the elixophyllin (liquid) in me,(my doctor and I call it draino) and take a quick warm shower I'm pretty good for the day. On the occasion that one or another sinus becomes stuffed and painful I use magnets. Locate the offending sinus by pressing on it, and place the dot or two on top. Magnadots are very small magnet that come on bandaid type patches, they're available on line and in most rite aid stores. the magnets are reusable, the dots get replaced after a couple of days as they wear off. one can shower with them etc. (these are also very helpful for any sort of pain that is localized, ie tooth, jaw, knee, shoulder etc) I find that the stuffed sinus begins to clear within about 20 minutes, but I keep them on for a few days. It looks strange, but it works. it's cheap, and effective and no side effects. basic technique for using the magnetic dots is to find the 'ouch spot' by applying finger pressure. place the dot where it hurts the most. If it's a larger area use several. I think that's what's called a trigger point. light application to a general area will not be as effective. press on the center of the dot for a few seconds and then massage the adhesive to make it stick.Throat sprays work for dryness, as do some hard candies, sugarless of not as you prefer. Biotene mouth wash is recomended for dry mouth. From what I can tell there's no end to this, but good management can go a long way. These have worked for me. Might want to read up on some and then ask your doctor. Mine were willing to work with me to get this annoying piece of cll at least put in the background. I still carry kleenex with me and don't sing much except in the shower, but at least the most annoying, and most of the infections are in the past, for now. all the best - beth fillman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 Bettie, Consider nasal irrigation (salt water nasal sprays or a neti pot) and IVIG. Steroid nasal sprays help many. If antibiotic are indicated, they made need to be used for 6 weeks. Discuss all this w tyour doc. I can not give medical advice online. Be well Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 I went to the doc (my gp) today with the symptoms of sinusitis. Sigh, just one more crummy thing (don't even want to list all my stuff - of course all chronic, yuk). Turns out she thinks it's an infection, which is what I suspected, and put me on a 20 day course of antibiotics, 2 a day. She said to definitely NOT to use the steroid stuff that she was first going to give me until she checked things out more thoroughly as it can suppress your immune system even more. I haven't had any treatment as I mentioned in my other post about the night sweats, so not sure if that applies to someone how has been treated. I made the usual mistake of researching sinusitis online and yikes, there is some scary stuff about it, especially on wikipedia! Totally freaked me out so I hope it truly is just an infection! BTW, my always healthy as a horse husband is having an MRI tomorrow for suspected bone cancer. Good thoughts sent our way would be appreciated - I'm so scared as he is my rock ! Just had our anniversary on New Year's Eve. Sorry to get OT, but my plate is running over big time. Happy New Year and let's hope for a healthier 2010. Best to all of you good people! > > Hi Bettie, > > Sinus issues and cough seem to go with cll/sll - me too and I've had > no treatment to date, other than IVIG. CLL seems to show it's ugly > symptoms in varying orders. I presented with huge sinus and bronchial > problems prior to diagnosis, so can't say if or what any treatment has > to do with this element. I had been on flonase (and others of that > ilk) and advair for years prior to dx and went off of them since I > worried about using steroids of any sort with the endless scripts for > levaquin I was being given.(FDA warnings are posted on this > specifically) I now take neither of those, nor any levaquin and have > had fewer problems. I had been put on those for chronic bronchitis, but > that too has become much less of a problem now. I had read on clltopics > about singulaire being used for cll, so requested that, (this drug > works on leukotreins sp? and that has something to do with inflamatory > reactions) and I also take allegra and guifinex (over the counter) and > have added elixophyllin, (theophyllin elixer - theophyllin has also been > studied in cll) With this protocol I have had many fewer problems. > (theophyllin can make one a bit racy so dosing has to be worked on and > blood tests done every few months, but it's an old drug that's been > working for years, it's basically a broncho dilator which has been > supplanted by all the new steriod drugs, but still works! It's action in > cll has been studied and one of my doctors gave me the abstract) > my stuffiness is worst in the am, but once I get those pills and the > elixophyllin (liquid) in me,(my doctor and I call it draino) and take a > quick warm shower I'm pretty good for the day. > > On the occasion that one or another sinus becomes stuffed and painful I > use magnets. Locate the offending sinus by pressing on it, and place > the dot or two on top. Magnadots are very small magnet that come on > bandaid type patches, they're available on line and in most rite aid > stores. the magnets are reusable, the dots get replaced after a couple > of days as they wear off. one can shower with them etc. (these are > also very helpful for any sort of pain that is localized, ie tooth, jaw, > knee, shoulder etc) I find that the stuffed sinus begins to clear > within about 20 minutes, but I keep them on for a few days. It looks > strange, but it works. it's cheap, and effective and no side effects. > basic technique for using the magnetic dots is to find the 'ouch spot' > by applying finger pressure. place the dot where it hurts the most. > If it's a larger area use several. I think that's what's called a > trigger point. light application to a general area will not be as > effective. press on the center of the dot for a few seconds and then > massage the adhesive to make it stick. > > > Throat sprays work for dryness, as do some hard candies, sugarless of > not as you prefer. Biotene mouth wash is recomended for dry mouth. > From what I can tell there's no end to this, but good management can go > a long way. These have worked for me. Might want to read up on some > and then ask your doctor. Mine were willing to work with me to get > this annoying piece of cll at least put in the background. I still > carry kleenex with me and don't sing much except in the shower, but at > least the most annoying, and most of the infections are in the past, for > now. > > all the best - beth fillman > Quote Link to comment Share on other sites More sharing options...
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