Re: Re: Surgery Techniques and Singulair Question

[Guest guest]

Trudy,

I found out several years ago that prednisone had given me osteoporosis.

Since then I have been taking fosamax once a week plus extra calcium and

vitamin D. Earlier this year, a bone density test showed that I was back to

normal! That fosamax really works. My doctor suggested I keep taking it as a

preventive since I periodically take prednisone bursts.

Jim

Re: Surgery Techniques and Singulair Question

> Greetings fellow Samerterites,

>

> It just occurred to me in reviewing the survey (btw,

> thanks Ken for your support on this) that most Samter

> suffers that have undergone polyp surgery experience

> re growth. I'm curious to know if anyone has heard of

> polyp surgery techniques utilizing Cat Scan

> technology?

Bill, I have had the Insta-Trak surgery you are referring to...a few

times. Polyps have always returned unless long term steroid use. I am

currently taking prednisone five months now and my exam went very

well, the ENT has decided we will stay on low dose indefinately

instead of subjecting me to bursts of 60mg. that last a few months

anyway. I am going for a bone density soon as I have been on/off

prednisone for 23 years now. Trudy.

[Guest guest]

Barb,

Who is your ENT? I will have my surgery Friday at UPENN. My doctor is Jim Palmer.

Joan

Re: Surgery Techniques and Singulair Question

Bill-I had CT image guided surgery 3 times at U of Penn, in '97 I agreed to be in the clinical trial of the technology, then in 2000 and 2003.Singulair did not work for me. I was on Accolate back in '96 when FDA approved it. Took it for 9 months, had my first sinus surgery, then was on Accolate for 5 more months. No improvement for me, and news of the C-S connection came out in Aug of 1997. ENT felt benefit did not outweigh risk. I tried Singulair in 2000, after my second surgery was a failure and I was still taking oral steroids. At that time, at the age of 34, I developed osteopenia, cataracts and glaucoma secondary to the prednisone use. While tapering the steroids and starting the Singulair, I developed a terrible rash, was tested for everything under the sun, Lupus, RA, CSS, Wegner's. All were negative, but I D/C the Singulair since it didn't improve the polyps and I couldn't take the itchy rash that would begin on my hands and feet then cover my body.Barb V. NJ

[Guest guest]

Hi Barb - I have just read your e-mail. I too get an itchy rash, starting on my feet and hands which then creeps up to the rest of my body! It's truly awful and I feel is connected to Samters triad. I thought it was a reaction to montelukast(singulair) but have decided not because I have had the rash while not on singulair and have had rash-free times on singulair. My rash is urticarial in nature and seems to be more connected to having a cold and times of extreme stress. I have found that taking herbals calms tablets and paracetamol help me cope better with it.

What do you think?

Beck xJoanie Miles <joaniem@...> wrote:

Barb,

Who is your ENT? I will have my surgery Friday at UPENN. My doctor is Jim Palmer.

Joan

Re: Surgery Techniques and Singulair Question

Bill-I had CT image guided surgery 3 times at U of Penn, in '97 I agreed to be in the clinical trial of the technology, then in 2000 and 2003.Singulair did not work for me. I was on Accolate back in '96 when FDA approved it. Took it for 9 months, had my first sinus surgery, then was on Accolate for 5 more months. No improvement for me, and news of the C-S connection came out in Aug of 1997. ENT felt benefit did not outweigh risk. I tried Singulair in 2000, after my second surgery was a failure and I was still taking oral steroids. At that time, at the age of 34, I developed osteopenia, cataracts and glaucoma secondary to the prednisone use. While tapering the steroids and starting the Singulair, I developed a terrible rash, was tested for everything under the sun, Lupus, RA, CSS, Wegner's. All were negative, but I D/C the Singulair since it didn't improve the

polyps and I couldn't take the itchy rash that would begin on my hands and feet then cover my body.Barb V. NJ

ALL-NEW Messenger - all new features - even more fun!

[Guest guest]

Hi Barb,

I've heard about Dr. Kennedy through Dr. Palmer. I had actually emailed Dr. Cohen with a list of questions pertaining to Samters and their study. I would imagine that someday ASA desensitization will come to PENN...just a matter of time. Dr. Palmer also takes his time with surgery...last one with him in 2003 was 4-5 hours as well. He doesn't think that this one will be as long though.

It's uncertain that I will have a follow up on Monday. Dr. Palmer's wife just had a baby on the 31st and he has taken the 2 weeks after my surgery off from operating (though he said he'd come in for my debridement). I'll let you know what they date is though. How often do you go in to see Dr. Kennedy? It would be great to meet up with you, even if it doesn't work out next week. I'll let you know when I know something. Incidentally, does Dr. Kennedy keep you overnight after surgery? Jim is fighting me on this one. I want to come home...he's a little more leery about that idea...

Thanks,

Joan

Re: Surgery Techniques and Singulair Question

Joan-I see Dr. Kennedy at PENN. His fellow back in '97, Dr. Hwang, performed my first surgery. Dr. Bolger was there in 2000 as Chief of Rhinology and he did my second surgery. He left PENN to return to Walter Reid and Dr. Palmer took his place. I was able to get to Dr. Kennedy for my last surgery in 2003 and he is great. He was meticulous in my surgery, almost four hours. Was very open to try various alternatives post op when the polyps returned and got me to Scripps. I have been pushing for ASA desensitization at PENN with Dr. Chiu, but no luck. He is currently doing some research with Dr. Cohen on Samter's. Good luck with your surgery Friday. I will be at PENN on Monday the 15th for an office visit. If you have a post op visit that day, maybe we can meet?Good luck-Barb V