Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Yes Judy, I have...strangely though only since my IPF diagnosis in 07 & it has recurred a few times...last was just a week or so ago. Initially my GP gave me a course of antibiotics but since then I've just put up with it until it eventually passed. It is painful & hurts when eating......it's my right side that seems to flare up! Has me wondering if there's an autoimmune connection! Gosh you don't need more stuff to bother you Judy.... Protector, get lookin' after this girl!!!!!!!!!!!!! Cheers, in Oz >> Hello all Air Friends,> Has anyone every had a swollen Parotid Gland? If so what helped? > This is my 3rd time to have this problem by my left ear. The first > time I was still working at Newport, IN; and looked like I had the > mumps. The doctor had a CT scan done to see if I had a salvia stone, > but did not. I do not remember getting any medication for it. Last > year I had this problem, and my lung doctor recommended that I suck > on lemons. It hurt just thinking about that so I did not do it. > Instead I sucked on Sugar Free Ice Breaker Sours and chewed gum and > got over it. This week my lung doctor had let me stop taking Valcyte > (the medication to prevent the CMV virus) and is allowing me to stay > off of it until Mon. and see if it gets better just by using the > Sours. If it isn't better by Mon. he will have me have another CMV > blood test.> Those of you who do not know what CMV virus is: It is a virus which > they claim is in 85% of the world propulation, but most people don't > get sick from it except for post transplant people so they put you on > Valcyte as soon as you have the transplant. A year ago I had a sore > throat for 10 weeks after they had taken me off of Valcyte, and > finally the doctor decided to put me back on it to see if it helped. > Within 3 days my sore throat went away, and I have been taking > Valcyte every since May 3rd, 2008. It is the expensive medication > that costs $6,000 for a bottle which is a 3 months supply for 2 pills > per day. I got a refill in Dec. while I was still on Medicare > Catastrophic and only had to pay the 5% for the 3 month supply. But > if I have to continue on it the rest of my life this is not only > going to be very expensive, it also has lots of nasty side effects > like the rejection medication has.> Love and Aloha,> Judy (Ohio) IPF 11/06 TX 8/07> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Judy, that is terrible about the expense of your medication! Is there anything you can do? Can you contact the makers and see if they have a program for people who can't afford the drug? And, if you have had a transplant why can't you keep medicare? I am so sorry to hear this. Joyce R Prescott AZ IPF 1108 Re: Swollen Parotid Gland Yes Judy, I have...strangely though only since my IPF diagnosis in 07 & it has recurred a few times...last was just a week or so ago. Initially my GP gave me a course of antibiotics but since then I've just put up with it until it eventually passed. It is painful & hurts when eating......it's my right side that seems to flare up! Has me wondering if there's an autoimmune connection! Gosh you don't need more stuff to bother you Judy.... Protector, get lookin' after this girl!!!!!!!!!!!!! Cheers, in Oz >> Hello all Air Friends,> Has anyone every had a swollen Parotid Gland? If so what helped? > This is my 3rd time to have this problem by my left ear. The first > time I was still working at Newport, IN; and looked like I had the > mumps. The doctor had a CT scan done to see if I had a salvia stone, > but did not. I do not remember getting any medication for it. Last > year I had this problem, and my lung doctor recommended that I suck > on lemons. It hurt just thinking about that so I did not do it. > Instead I sucked on Sugar Free Ice Breaker Sours and chewed gum and > got over it. This week my lung doctor had let me stop taking Valcyte > (the medication to prevent the CMV virus) and is allowing me to stay > off of it until Mon. and see if it gets better just by using the > Sours. If it isn't better by Mon. he will have me have another CMV > blood test.> Those of you who do not know what CMV virus is: It is a virus which > they claim is in 85% of the world propulation, but most people don't > get sick from it except for post transplant people so they put you on > Valcyte as soon as you have the transplant. A year ago I had a sore > throat for 10 weeks after they had taken me off of Valcyte, and > finally the doctor decided to put me back on it to see if it helped. > Within 3 days my sore throat went away, and I have been taking > Valcyte every since May 3rd, 2008. It is the expensive medication > that costs $6,000 for a bottle which is a 3 months supply for 2 pills > per day. I got a refill in Dec. while I was still on Medicare > Catastrophic and only had to pay the 5% for the 3 month supply. But > if I have to continue on it the rest of my life this is not only > going to be very expensive, it also has lots of nasty side effects > like the rejection medication has.> Love and Aloha,> Judy (Ohio) IPF 11/06 TX 8/07> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 Judy, that is terrible about the expense of your medication! Is there anything you can do? Can you contact the makers and see if they have a program for people who can't afford the drug? And, if you have had a transplant why can't you keep medicare? I am so sorry to hear this. Joyce R Prescott AZ IPF 1108 Re: Swollen Parotid Gland Yes Judy, I have...strangely though only since my IPF diagnosis in 07 & it has recurred a few times...last was just a week or so ago. Initially my GP gave me a course of antibiotics but since then I've just put up with it until it eventually passed. It is painful & hurts when eating......it's my right side that seems to flare up! Has me wondering if there's an autoimmune connection! Gosh you don't need more stuff to bother you Judy.... Protector, get lookin' after this girl!!!!!!!!!!!!! Cheers, in Oz >> Hello all Air Friends,> Has anyone every had a swollen Parotid Gland? If so what helped? > This is my 3rd time to have this problem by my left ear. The first > time I was still working at Newport, IN; and looked like I had the > mumps. The doctor had a CT scan done to see if I had a salvia stone, > but did not. I do not remember getting any medication for it. Last > year I had this problem, and my lung doctor recommended that I suck > on lemons. It hurt just thinking about that so I did not do it. > Instead I sucked on Sugar Free Ice Breaker Sours and chewed gum and > got over it. This week my lung doctor had let me stop taking Valcyte > (the medication to prevent the CMV virus) and is allowing me to stay > off of it until Mon. and see if it gets better just by using the > Sours. If it isn't better by Mon. he will have me have another CMV > blood test.> Those of you who do not know what CMV virus is: It is a virus which > they claim is in 85% of the world propulation, but most people don't > get sick from it except for post transplant people so they put you on > Valcyte as soon as you have the transplant. A year ago I had a sore > throat for 10 weeks after they had taken me off of Valcyte, and > finally the doctor decided to put me back on it to see if it helped. > Within 3 days my sore throat went away, and I have been taking > Valcyte every since May 3rd, 2008. It is the expensive medication > that costs $6,000 for a bottle which is a 3 months supply for 2 pills > per day. I got a refill in Dec. while I was still on Medicare > Catastrophic and only had to pay the 5% for the 3 month supply. But > if I have to continue on it the rest of my life this is not only > going to be very expensive, it also has lots of nasty side effects > like the rejection medication has.> Love and Aloha,> Judy (Ohio) IPF 11/06 TX 8/07> Quote Link to comment Share on other sites More sharing options...
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