Guest guest Posted February 1, 2000 Report Share Posted February 1, 2000 Dear , I'm happy that you finally decided to post. Your Genotype is used as a reference tool in determining which treatment you're mostly likely to respond to and the length of time you should be on it. I never used the pen but did get red welts when I injected in my arms and legs. I thought the idea of injecting in my stomach was too gross and held off on it for a long time. One day, to my surprise, I got the nerve to try it and voila! No more red welts and it was alot less painful. Brain fog certainly sucks and it comes and goes with me. I do find it being less, now that I'm not on treatment. I was on Intron A alone and failed to get a negative PCR. I'm currently awaiting the results from my Genotyping and will most likely be put on the Combo when I see my Hepatologist on Feb. 9th. Try taking Gingko Baloba (not sure on the spelling) I don't take it but have friends that do and they tell me it does help. Good luck to you and once again, welcome to our circle of friends. Love, Bren Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2000 Report Share Posted February 5, 2000 Hi everybody. I was also on Intron A for 6 mos as well as 6 mos of combo. The pen is great. I didn't have any problems at all with it. I used my abdomen for injection sites alot and I got less bruising than any other sites. And it really doesn't hurt at all. Its just the thought that makes it seem bad. Anyway, I just got the results back from the genotype test.. I have genotype 1b, which from the book I read, is not a good one to have. Any information anyone has regarding this genotype would be a big help. I also read that with genotype 1b, you should be on the combo for 12 months. My GI had me on it for 6 months. I honestly believe he had no idea how to treat HepC. So ...any info would be great. Thanks....Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2000 Report Share Posted February 5, 2000 Dear Amy, I am also genotype 1b. Yes, it is harder to get rid of and you should stay on combo 48wks or 1 year. I read an article about researchers trying to predict which people with HCV would have " adverse outcomes " and genotype 1b was one of the things the found. To me, that just means I'm going to have to be more persistent in getting whatever treatments I need. Even if the combo I was on for a year didn't eliminate the virus, it did give my liver a much needed break. If I have to do it again, then I will, until the cure is here! Claudine >From: McCoyAngel@... >Reply-Hepatitis Conelist >Hepatitis Conelist >Subject: Re: NEWCOMER >Date: Sat, 5 Feb 2000 16:36:53 EST > >Hi everybody. I was also on Intron A for 6 mos as well as 6 mos of combo. >The pen is great. I didn't have any problems at all with it. I used my >abdomen for injection sites alot and I got less bruising than any other >sites. And it really doesn't hurt at all. Its just the thought that makes >it seem bad. Anyway, I just got the results back from the genotype test.. >I >have genotype 1b, which from the book I read, is not a good one to have. >Any >information anyone has regarding this genotype would be a big help. I also >read that with genotype 1b, you should be on the combo for 12 months. My >GI >had me on it for 6 months. I honestly believe he had no idea how to treat >HepC. So ...any info would be great. Thanks....Amy ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2000 Report Share Posted February 7, 2000 Dear Beth, I remember hearing that relapsers usually did even better on a second round of treatment. I have no idea if this is true or not. I do know that I would not want a doctor who just gave up on me! What genotype are you? I think if you clear the virus at 6 months you are supposed to stay on the treatment for another 24 weeks. Claudine >From: Beth_Sutter@... >Reply-Hepatitis Conelist >Hepatitis Conelist >Subject: RE: NEWCOMER >Date: Mon, 7 Feb 2000 08:13:13 -0600 > >Hi Amy, > >After you completed the 6 months of combo did you respond? I did " clear " >the virus at 6 months and my GI took me off. When I went for the next 6 >month checkup the virus was back. He wouldn't let me go back on or try >anything else. He said that I was not a sustained responder and had to >wait >for something else to come along. I am interested in hearing what other >people have done in this case. Thanks. > >Beth > > > Re: NEWCOMER > > >From: McCoyAngel@... > >Hi everybody. I was also on Intron A for 6 mos as well as 6 mos of combo. >The pen is great. I didn't have any problems at all with it. I used my >abdomen for injection sites alot and I got less bruising than any other >sites. And it really doesn't hurt at all. Its just the thought that makes >it seem bad. Anyway, I just got the results back from the genotype test.. >I > >have genotype 1b, which from the book I read, is not a good one to have. >Any >information anyone has regarding this genotype would be a big help. I also >read that with genotype 1b, you should be on the combo for 12 months. My >GI > >had me on it for 6 months. I honestly believe he had no idea how to treat >HepC. So ...any info would be great. Thanks....Amy > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2000 Report Share Posted February 7, 2000 Dear Beth, I remember hearing that relapsers usually did even better on a second round of treatment. I have no idea if this is true or not. I do know that I would not want a doctor who just gave up on me! What genotype are you? I think if you clear the virus at 6 months you are supposed to stay on the treatment for another 24 weeks. Claudine >From: Beth_Sutter@... >Reply-Hepatitis Conelist >Hepatitis Conelist >Subject: RE: NEWCOMER >Date: Mon, 7 Feb 2000 08:13:13 -0600 > >Hi Amy, > >After you completed the 6 months of combo did you respond? I did " clear " >the virus at 6 months and my GI took me off. When I went for the next 6 >month checkup the virus was back. He wouldn't let me go back on or try >anything else. He said that I was not a sustained responder and had to >wait >for something else to come along. I am interested in hearing what other >people have done in this case. Thanks. > >Beth > > > Re: NEWCOMER > > >From: McCoyAngel@... > >Hi everybody. I was also on Intron A for 6 mos as well as 6 mos of combo. >The pen is great. I didn't have any problems at all with it. I used my >abdomen for injection sites alot and I got less bruising than any other >sites. And it really doesn't hurt at all. Its just the thought that makes >it seem bad. Anyway, I just got the results back from the genotype test.. >I > >have genotype 1b, which from the book I read, is not a good one to have. >Any >information anyone has regarding this genotype would be a big help. I also >read that with genotype 1b, you should be on the combo for 12 months. My >GI > >had me on it for 6 months. I honestly believe he had no idea how to treat >HepC. So ...any info would be great. Thanks....Amy > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2000 Report Share Posted February 7, 2000 Hi Amy, After you completed the 6 months of combo did you respond? I did " clear " the virus at 6 months and my GI took me off. When I went for the next 6 month checkup the virus was back. He wouldn't let me go back on or try anything else. He said that I was not a sustained responder and had to wait for something else to come along. I am interested in hearing what other people have done in this case. Thanks. Beth Re: NEWCOMER From: McCoyAngel@... Hi everybody. I was also on Intron A for 6 mos as well as 6 mos of combo. The pen is great. I didn't have any problems at all with it. I used my abdomen for injection sites alot and I got less bruising than any other sites. And it really doesn't hurt at all. Its just the thought that makes it seem bad. Anyway, I just got the results back from the genotype test.. I have genotype 1b, which from the book I read, is not a good one to have. Any information anyone has regarding this genotype would be a big help. I also read that with genotype 1b, you should be on the combo for 12 months. My GI had me on it for 6 months. I honestly believe he had no idea how to treat HepC. So ...any info would be great. Thanks....Amy --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2000 Report Share Posted February 7, 2000 Hi Amy, After you completed the 6 months of combo did you respond? I did " clear " the virus at 6 months and my GI took me off. When I went for the next 6 month checkup the virus was back. He wouldn't let me go back on or try anything else. He said that I was not a sustained responder and had to wait for something else to come along. I am interested in hearing what other people have done in this case. Thanks. Beth Re: NEWCOMER From: McCoyAngel@... Hi everybody. I was also on Intron A for 6 mos as well as 6 mos of combo. The pen is great. I didn't have any problems at all with it. I used my abdomen for injection sites alot and I got less bruising than any other sites. And it really doesn't hurt at all. Its just the thought that makes it seem bad. Anyway, I just got the results back from the genotype test.. I have genotype 1b, which from the book I read, is not a good one to have. Any information anyone has regarding this genotype would be a big help. I also read that with genotype 1b, you should be on the combo for 12 months. My GI had me on it for 6 months. I honestly believe he had no idea how to treat HepC. So ...any info would be great. Thanks....Amy --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2000 Report Share Posted February 7, 2000 Hi Claudine, I don't know what my genotype is. I don't believe that my doctor every found out. I thought I was supposed to stay on for the full 12 months but my GI decided that it wasn't necessary. I am in the process of switching doctors. I think I will feel more comfortable if I get a second opinion. Thank you. Beth Re: NEWCOMER > > >From: McCoyAngel@... > >Hi everybody. I was also on Intron A for 6 mos as well as 6 mos of combo. >The pen is great. I didn't have any problems at all with it. I used my >abdomen for injection sites alot and I got less bruising than any other >sites. And it really doesn't hurt at all. Its just the thought that makes >it seem bad. Anyway, I just got the results back from the genotype test.. >I > >have genotype 1b, which from the book I read, is not a good one to have. >Any >information anyone has regarding this genotype would be a big help. I also >read that with genotype 1b, you should be on the combo for 12 months. My >GI > >had me on it for 6 months. I honestly believe he had no idea how to treat >HepC. So ...any info would be great. Thanks....Amy > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2000 Report Share Posted February 7, 2000 Beth: I have a friend who responded and relapsed twice on interferon...the third round of combo for a year seems to have done the trick...she's been off of it for 6 months and is stil viral free! Try again! Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 Good for you!! I would try for a second opion as well , from wha I understand if you responded another 24 weeks is recommended Good Luck! Suzy From: Beth_Sutter@... Reply-Hepatitis Conelist Hepatitis Conelist Subject: RE: NEWCOMER Date: Mon, 7 Feb 2000 11:42:56 -0600 Hi Claudine, I don't know what my genotype is. I don't believe that my doctor every found out. I thought I was supposed to stay on for the full 12 months but my GI decided that it wasn't necessary. I am in the process of switching doctors. I think I will feel more comfortable if I get a second opinion. Thank you. Beth Re: NEWCOMER > > >From: McCoyAngel@... > >Hi everybody. I was also on Intron A for 6 mos as well as 6 mos of combo. >The pen is great. I didn't have any problems at all with it. I used my >abdomen for injection sites alot and I got less bruising than any other >sites. And it really doesn't hurt at all. Its just the thought that makes >it seem bad. Anyway, I just got the results back from the genotype test.. >I > >have genotype 1b, which from the book I read, is not a good one to have. >Any >information anyone has regarding this genotype would be a big help. I also >read that with genotype 1b, you should be on the combo for 12 months. My >GI > >had me on it for 6 months. I honestly believe he had no idea how to treat >HepC. So ...any info would be great. Thanks....Amy > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2000 Report Share Posted February 13, 2000 Beth, Yes I did respond. My viral load was undetectable at the end of 6 mos. But 6 mos after being off...I relapsed. My GI doc said " There's nothing else to do unless something new becomes available " . But from what I'm hearing...if you have 2b, you should be on the combo for a minimum of 48 weeks. And my Dr didn't know what genotype I was...I insisted on knowing and having the test after I found out the virus was detectable again. But I honestly think he has not dealt much with Hep C.....didn't have any answers when I asked questions. I don't know...but if I had continued the combo for another 24 weeks...maybe I would have had a longer lasting response??? Who knows,,, maybe I wouldn't have had either. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2000 Report Share Posted February 13, 2000 Beth, Yes I did respond. My viral load was undetectable at the end of 6 mos. But 6 mos after being off...I relapsed. My GI doc said " There's nothing else to do unless something new becomes available " . But from what I'm hearing...if you have 2b, you should be on the combo for a minimum of 48 weeks. And my Dr didn't know what genotype I was...I insisted on knowing and having the test after I found out the virus was detectable again. But I honestly think he has not dealt much with Hep C.....didn't have any answers when I asked questions. I don't know...but if I had continued the combo for another 24 weeks...maybe I would have had a longer lasting response??? Who knows,,, maybe I wouldn't have had either. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2008 Report Share Posted August 17, 2008 Vella, I don't know what you premiums are but I would say that you are not getting very good coverage. I would shop around and see what else is available. Realize that the premiums may go up but it maybe worth it if they cover most of the operation. My wife and I have a health savings plane with an HMO. I pay more for doctor visits and such but my monthly premium is about 2/3's less that the regular HMO payment. When I run up medical cost over $3000 dollars in a year the package pays for everything else. That might seem like a lot but you can go to emergency with a cough and hit that pretty quickly. I heard of a fellow who had both knees replaced and it only cost him $69 dollars out of pocket. Don't know what his premiums were but that just does not seem right IMO. I am not saying we should pay more but I would be willing to pay more if the final bill was half. I heard it is about $30 to $50 thousand for a knee today. I would like it to be $10 to $15 with the patient paying about a 1/4 to a 1/3 with reasonable premiums. I will get off my soap box now. Don > > Hi All, > I just wish I'd found this group earlier. What a wealth of information. > To set the stage, a year and a half ago I was diagnosed with severe arthritis in both hips. What I'm up against is that my current insurance (AARP) won't cover more than about 1/4 of the cost of one replacement, and I'm concerned they'll evoke the pre-existing clause anyway since I haven't been with them a year. I turn 65 in Feb so all roads lead to medicare. Also, I'll be able to piggyback on my husband's state employee insurance. > In the meantime, I haven't seen much point in starting the process of hooking up with a surgeon. There's one clinic in the valley that handles all orthopedic work and I've asked around and two names keep coming up so I'm thinking I'll go to one of them. My current dr. has had almost nothing to do with my arthritis since I went to a clinic for the tests and Xrays. I'm assuming my regular dr. will have to conduct his updated Xrays and then make the referral. (He's my dr. by default because he took over my long-time drs. practiice) When I mentioned that pain made sleeping hard, he told me to lose weight. Well I've lost 20 pounds and the nights aren't any better. I also do water therapy twice a week. He's totally against narcotics and I hate taking them because they destroy my brain. > My question: does it make any sense to move my hips over to the surgeon's care at this early date? > Vella > > A touch, and more, of erotica > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 I'm glad you're here, Amy. There are others in the group with both AIH and PBC, so you can discuss experiences in common. Harper AIH dx 2000 CD dx 2002 San Francisco and northern CA ************** Inauguration '09: Get complete coverage from the nation's capital. (http://news.aol.com/main/politics/inauguration?ncid=emlcntusnews00000003) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 Thanks so much Harper! Â Re: [ ] newcomer I'm glad you're here, Amy. There are others in the group with both AIH and PBC, so you can discuss experiences in common. Harper AIH dx 2000 CD dx 2002 San Francisco and northern CA ************** Inauguration '09: Get complete coverage from the nation's capital. (http://news.aol.com/main/politics/inauguration?ncid=emlcntusnews00000003) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Welcome to the group,these are a bunch of nice folks and will help whenever possible. Keep reading and learning. Clara from OR,dx99 > > Hey all - just joined group, I was diagnosed last month with PBC had a liver biopsy and now I > also have autoimmune hepatitis. Nice to meet all of you. > AMY > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Welcome!!! Yes, this is frustrating stuff to deal with. My 26 years experience dealing with Samters mirrors yours. Although we exhibit allergic type symptoms, we do not react positively to any allergy testing. Be very careful of ANY NSAIDS, not just aspirin, but Torodol and other NSAIDS. I get a shot of Kenalog (mild steroid) every six months to keep things somewhat in check. Predizone is also effective short term, although like you, the infection returns almost immediately. Irrigate with warm saline RELIGIOUSLY 3 times a day with a Neti-Pot or similar. I wish we had a magic bullet for you, but if we did, there would be no need for this group, huh?Good Luck and keep us posted.From: gongfy79 <gongfy79@...>Subject: Newcomersamters Date: Saturday, March 7, 2009, 3:14 PMI will try to abbreviate an extensive medical history. My first experienceswith what I now understand to be Samter's Syndrome, was the onset of a sinusinfection that ended up with surgery to remove polpys. I was 31 years old atthe time. 3 sinus surgeries and 17 years later, here I am. I was diagnosedwith 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 thatto date I have not had an observable reaction to aspirin. Although, I amcurrently on 81 mgs. of aspirin a day because of a severe family history ofatherosclerosis. Nobody seems to think taking me off the aspirin would help. My condition was fairly managable, until this past year. I am a 4th gradeteacher and am constantly exposed to viruses. I could count on a major sinusinfection/flare up 2-3 times a year, which was treated with antibiotics (usuallyceftin) and prednisone. This is on top of my usual daily dose of singulair,rhinocort (both intranasally and orally), 2400 mg. of guaifenesin, and salinenasal 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 ofprednisone. 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 sobad, I just have to go to bed and stay there. My entire body hurts at thispoint.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), alongwith folic acid. I am not exicited about being on low dose chemotherapy, or theblood tests I have to get every 2 weeks. He doesn't seem to think I have aninfection, just chronic inflammation. I have had 2 rounds of allergy testing, and I don't have allergies. I havehad all kinds of blood work and urinalysis, and I don't appear to have anyother 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 anysuggestions? ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2009 Report Share Posted March 8, 2009 Hi Gongfy, If you have never, ever reacted to aspirin or NSAIDS, how can anyone diagnose you with Samter's, instead of simply chronic rhinosinusitis with polyps + asthma ? This does not sound serious, unless members of your family have had previous reactions to aspirin, in which case aspirin sensitivity may have been presumed by your doctors. Otherwise, no aspirin/NSAID history whatsoever in the family does not warrant a diagnosis of Samter's. The only explanation I have is that either you do not have Samter's, or that this low 81mg daily dose has achieved a low degree of aspirin desensitization, but I would not necessarily bet on that. If you really want to be sure about Samter's, you will have to see an ENT knowledgeable in Samter's, for example one who practices aspirin desensitization. Also, if you have an endless infection, you should really have an endoscopic swab performed by an ENT at a teaching hospital to see it there is really any germ inside or not (bacteria, fungi). There is no point in pouring antibiotics without end on someting that is not sensitive to it. Finally, I am not familiar with the effects of Methotrexate, but I do know it is not standard prescription in Samter's nor in chronic rhinosinusitis with polyps, nor in asthma, so I think you could do without it. Discuss all this with an ENT knowledgeable in Samter's. Try gravity draining after irrigation (see previous posts). Good luck. > > 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 No, I have never reacted to aspirin or NSAIDS, and no there is no history of this in my family. I was given IV Toradol in the hospital when I had an abdominal hysterectomy (fibroid tumors) 4 years ago and suffered no ill effects. This was after I went into respiratory arrest from the Dilauded they gave me. I have had a problem with recurrent hives over the years (especially when exposed to the sun, but sometimes for no apparent reason at all) and 1 episode of angiodema long ago. The diagnosis of Samter's was first given by a local immunology/allergy specialist, and more recently confirmed with by an immunology/allergy specialist who is affiliated with a large teaching and research hospital. He is the one who prescribed the methotrexate. Evidently, it is a medication that is used with other autoimmune disorders such as psoriasis and rheumatoid arthritis. His rationale is that they cannot continue placing me on prednisone bursts (now starting with 60 mg/day), and that is the only thing that seems to reduce the inflammation. The down side is that it is basically low dose chemotherapy and is very hard on the liver. I am already on 80mg. a day of simvastatin for cholesterol, which is also hard on the liver. I did question them about the fact that I had not reacted to aspirin or NSAIDS, and they felt I had the potential to react. I began taking the low dose aspirin under their supervision. While they don't have a history of these sinus issues, my family has a very bad history of heart disease. The cardiologist, in conjunction with the immunologist decided that the benefits outweighed the risks and had me begin taking the low dose aspirin about 5 years ago in a supervised office setting. My sinus issues predate the aspirin by about 11 or 12 years. The last time I went into the ENT (December) and he scoped my sinuses, they were very inflammed and filled with polypoid growths. I just had my 4th surgery a year ago in August. Up until this past August, I could fairly well cope with 3-4 infections a year. They were treated successfully with Ceftin and a 6 day burst of prednisone. My current local immunologist (who did not agree with the diagnosis of Samter's - her best guess is a very mild form of cystic fibrosis) attempted to wean me off my steroid inhalers in August, thinking I no longer needed them. That is about when this recurrent inflammation started and we have not been able to get a handle on it since. I don't know if the two are connected, but it makes me wonder. I am pretty much exhausted. I am an elementary school teacher and absolutely love what I do. I am becoming increasingly afraid that I will have to leave the classroom and that will pretty much break my heart. At this point, I am willing to try whatever it takes to get healthy again. > > > > 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 Hi Gongfy, From what you expose, I see no sign of clue for Samter's ; this could (-could-) be a rare case of Samter's overdiagnosis, because Samter's is usually under-diagnosed ! You may have chronic rhinosinusitis with polyps, which is a real pain in itself even if you do not have Samter's, plus any other condition. Hives do often signal some allergy, or intolerance-like condition, though ; maybe that was what prompted your allergist to diagnose Samter's. You should really ask them what motivated their diagnosis, and if you want to make sure, do see an ENT who does ASA desens. Anyway, Samter's or not, if you have no reaction to 81mg aspirin, then that is all fine. Be aware, of course, of the classic, long-term side-effects of aspirin (ie once posted his story on that matter, and you might want to read it). If your cardiologist believes that benefits outweigh risks, then it would be very cautious to follow his advice ; Samter's does not kill (at least not these days), but strokes do. Regarding methotrexate, this is not the standard way to treat polyps, and personally I would definitely not use it for that ; this is another good incentive to see a Samter specialist. Have you tried sublingual desensitization if you are allergic to something (dust mites, pollens, molds, etc)? Do you irrigate with lukewarm saline three times a day (and drain by gravity afterwards) ? Now, this is not a cardiology group, but you should be aware of the potential side-effects of statins ; don't change any drug regimen without discussing with a specialist first, but a good way to reduce cholesterol apart from drugs is to switch to a very strict Mediterranean diet (also a subject which has been discussed in posts here) ; Omega-3s in the form of fish oils could also help. > > > > > > 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 Your story could easily be mine as well. I do have the aspirin reaction but it took a very long time to figure it out. I have gone through the desensitization process and it has helped a great deal. I have also learned to follow my instincts with what works. Along with the medicines you take I also take zyflo, and a antihistamine daily even though I am not “allergic” to anything it seems to help with symptoms. I would be concerned with the mexotrexate- what is their reasoning behind taking it, what is it suppose to accomplish?? Also if you post where you live it might help you find doctors that are more knowledgeable than others. Most of us on this sight have been through many doctors and although we don’t have a cure we do have a lot of information that can help. , NH From: samters [mailto:samters ] On Behalf Of gongfy79 Sent: Saturday, March 07, 2009 6:15 PM samters Subject: Newcomer 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 I was also an elementary school teacher and loved it, but being sick all the time made impossible to do it well and I got tired of dragging myself through each day. My ENT urged me to take a break from teaching so I did, It has helped a lot, If you can, take a sabbatical and see how you do. Of course now I am trying to figure out what to do for a career……. From: samters [mailto:samters ] On Behalf Of gongfy79 Sent: Monday, March 09, 2009 2:05 AM samters Subject: Re: Newcomer No, I have never reacted to aspirin or NSAIDS, and no there is no history of this in my family. I was given IV Toradol in the hospital when I had an abdominal hysterectomy (fibroid tumors) 4 years ago and suffered no ill effects. This was after I went into respiratory arrest from the Dilauded they gave me. I have had a problem with recurrent hives over the years (especially when exposed to the sun, but sometimes for no apparent reason at all) and 1 episode of angiodema long ago. The diagnosis of Samter's was first given by a local immunology/allergy specialist, and more recently confirmed with by an immunology/allergy specialist who is affiliated with a large teaching and research hospital. He is the one who prescribed the methotrexate. Evidently, it is a medication that is used with other autoimmune disorders such as psoriasis and rheumatoid arthritis. His rationale is that they cannot continue placing me on prednisone bursts (now starting with 60 mg/day), and that is the only thing that seems to reduce the inflammation. The down side is that it is basically low dose chemotherapy and is very hard on the liver. I am already on 80mg. a day of simvastatin for cholesterol, which is also hard on the liver. I did question them about the fact that I had not reacted to aspirin or NSAIDS, and they felt I had the potential to react. I began taking the low dose aspirin under their supervision. While they don't have a history of these sinus issues, my family has a very bad history of heart disease. The cardiologist, in conjunction with the immunologist decided that the benefits outweighed the risks and had me begin taking the low dose aspirin about 5 years ago in a supervised office setting. My sinus issues predate the aspirin by about 11 or 12 years. The last time I went into the ENT (December) and he scoped my sinuses, they were very inflammed and filled with polypoid growths. I just had my 4th surgery a year ago in August. Up until this past August, I could fairly well cope with 3-4 infections a year. They were treated successfully with Ceftin and a 6 day burst of prednisone. My current local immunologist (who did not agree with the diagnosis of Samter's - her best guess is a very mild form of cystic fibrosis) attempted to wean me off my steroid inhalers in August, thinking I no longer needed them. That is about when this recurrent inflammation started and we have not been able to get a handle on it since. I don't know if the two are connected, but it makes me wonder. I am pretty much exhausted. I am an elementary school teacher and absolutely love what I do. I am becoming increasingly afraid that I will have to leave the classroom and that will pretty much break my heart. At this point, I am willing to try whatever it takes to get healthy again. > > > > 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 December 30, 2009 Report Share Posted December 30, 2009 Hi everyone - I am new here and would LOVE to get some advice and share experiences... I hope it's OK to ask this much in my first message. I am age 59 and have had back pain on and off since about age 21. At times I was helped by some things - and not by others (MedX machine for one.) Chiropractic treatments never helped much. Around age 23 I was given an MRI and told that I had a herniated disk L4-L5 and some scoliosis. I had numerous painful episodes from age 23 to 40, sometimes ending up unable to get out of a bed or off a sofa for days at a time. Fortunately these incidents were far enough apart that I was able to function normally almost all of the time. I am finding out that my experience is not that uncommon. Plenty of my friends have back problems, as do my mom and my daughter. However, at age 40 I had some lidocaine injections that helped a LOT, and was given some orthotics that pretty much took away the pain episodes completely. Like others, I learned how to lift better, stand better, stretch, exercise etc. I was also found to have a fallen arch on my left foot. I developed some pain in the left foot from time to time. This comes and goes but the foot is now pretty abnormal looking, with the fallen arch and the toes are pushed to the left. The orthotics helped me for about 8 - 10 years and I only rarely got back injuries that hurt, and the pain soon went away. After a while the pain came back more regularly in my back and I noticed how restricted my movement was especially my left leg losing more flexibility and the same for my lower back. Now I have been getting bad cramps in both legs, and tingles in my left arm and hand. Also some back pain from time to time, and sometimes a little difficulty standing for any length of time due to the pain. I have tried physical therapy / rehab, new orthotics, a new expensive office chair, an MRI, a nerve conduction EMG test (OUCH!) and so far no real help. The MRI shows arthritis in several areas, and some pinching of the nerves in both my lumbar region and neck. C6-C7, L4-L5 and I forget where else... Now they say that I have spinal stenosis, arthritis, etc. Not fun. My latest attempts at self help include a weight loss program. I have lost ten of the 40 pounds I need to lose in the past two weeks. Yes, even with the holidays(!) and I have also started going to the gym, which DOES seem to help a little already with the leg cramps and certainly with the weight loss. I was taking Skelaxin, prednisone, Butalb-APAP-Caff for pain etc. The pain specialist gave me some Voltaren Gel (Diclofenac) to try, which is pretty useless as far as I can tell. I take the prredinisone occasionally for mouth sores. I know it can help back pain somewhat too. The other physician who performed my neuro tests said that they will probably want to give me epidural cortisone injections. So I have been reading up on this. I know that they need to use flouroscopy and one friend recommended having general anesthesia for it too. I spoke with another friend today and he said that he had problems with he use of this cortisone because the pain relief caused him to not realize when he was getting hurt. He said that he did more damage and ended up having to have two vertebrae fused. Just like some other people who I have spoken with about having bones fused, he was not pleased with the result. He still has back pain and now has other complications too. (not sure what he meant.) I spoke with another friend recently who has a titanium rod in her back and she is not at all pleased. She says that it is better than nothing, but still seems unhappy with it. Perhaps the restricted movement puts strain on other areas. Now I feel some reservation about proceeding with the epidural treatments if my regular pain specialist doctor does in fact recommend them. Trouble is - I have a job where I have to do some lifting - sometimes as much as 50 pounds, several times in one day. I also play music and need to lift my musical instruments in and out of a van etc. Thankfully I am still very active and there is a lot that I can still do, but it has been a painful period for me over the past 4 - 5 months since things started geetting really painful. I am cautiously optimistic about the improvements I am getting with going to the gym and strengthening my core lately, but wish I had learned more about all of this years ago and taken my health more seriously. I wish my family doctor hadn't taken it so simply too, until I demanded relief from the pain after several months of trying things again and again that didn't work. Quote Link to comment Share on other sites More sharing options...
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