Jessa

[Guest guest]

Wow. Fourteen years of prednisone. I feel like a relative beginner.

I absolutely agree with you about the quality of life. It is a vast

improvement...that's why I refuse to go off them. I'm so tired and

sick and miserable all of the time without them. My mom has been

putting a lot of pressure on me lately to get off of the 'roids. (On

the assumption that I'll never date or get married if I don't lose

the weight I've gained on it.)

So, yeah, quality of life. I just wish I could be a little less

osteoporotic, acne-ridden, weight-gaining while one it.

Hi Jessa,

Don't give up hope! I was on a regular dose of prednisone from

about age 22 til I was 36. The lowest I could get down to was like 4

mg every other day. It was frustrating. And yes, I had my share of

negative effects. Things apparently have improved with my asthma

since I've gotten older. But don't forget---this is a quality of

life issue. I'm convinced I would have died without prednisone all

those years. My heart would have been to weak to fight all the

breathing problems. So cheer up! You aren't alone, we all

understand and are SURVIVORS!

Sue G(AZ)

[Guest guest]

It's posts like this that make me marvel at the wonder of the internet, ie:

80% trash, 19% useful information, 1% inspiration.

Communication between 2 people who otherwise would never have known of each

other.

Thank you for sharing, Lori.

And, of course, I agree with your endorsement of the desensitization.

regards,

Ken West

> From: " Lori Baur " <truelori@...>

> Reply-samters

> Date: Mon, 19 Jan 2004 14:47:12 -0500

> <samters >

> Subject: Jessa

>

> Jessa, I really empathize with your situation because when I was about your

> age I was in similar circumstances, including financially, because I was a

> student my insurance did not cover ANY asthma treatments including

> medications. And as a student, who has money? I wish I could solve that

> part for you. Samters can really be such a big life stressor, and doctors

> don't understand that. I really understand about you have to feel good. I

> reallly really understand it. I was there.

>

> Do you live in a big city? I thought maybe you did because of the subway.

> You're not here in NY are you? I am just wondering if there is any way you

> can get some public assistance type of stuff for your medical treatment or

> at least the medications. I eventually went to a public hospital here and

> got enrolled in their program on the basis of my income (since I was a grad

> student, I hardly had any, even though I was working all through school) and

> was able to get all my asthma medications for free (now you can get them for

> a co-pay) plus doctors appointments and everything. They even had an asthma

> clinic. If you don't live in a big city they still might have something

> like that but I guess it's more common in the big cities. It was not fun

> relying on a public hospital because it is more time-consuming, but if you

> don't have the money or the medical insurance, it is so much better than

> your health continuing to deteriorate.

>

> I really hear everything you are saying and I worry about you because I see

> me 11, 12 years ago. I really want you to reconsider the densensitization,

> especially in light of what you've said about the other medications not

> being covered soon. I did not have a tube put down my throat but my asthma

> was almost that bad, and I was hospitalized all the time. I am not sure if

> they will do the aspirin desense if you've been intubated before, but they

> might. I don't think your ENT is the best person to know about this.

> Aspirin desensitization is not common, most doctors don't understand it.

> They assume if you've reacted badly you can't do it. But it's precisely

> those who react badly that are likely to benefit the most from it!! I say

> this because I KNOW. I've been there. And desensitization was really scary

> but it was so much less scary than living how I was living. Of course in

> your situation I would highly recommend Scripps for the desensitization but

> they're the specialists and have the most experience.

>

> If you don't have the money to take a week and a half and go to California

> perhaps you can get a grant or something for the travel and time off from

> some organization. If not I'm going to have a fundraiser here and send you

> money myself! I'm serious. If you are eligible according to their

> standards I think you should really consider it. It might not work, but

> then again it might and it might save your life and keep you off steroids

> for a few years ... I was on the aspirin for seven years while I got my life

> in order, got a job with insurance, got healthier in other ways, and then I

> went off of it when other medications were working better. But without the

> aspirin I am telling you I would not be here today.

>

> Putting the consequences of steroids aside, in all likelihood they are not

> going to keep working. You've had your first taste of that now.

>

> I don't know what combinations of the other medications you've used, but

> that can make a big difference, and also you might need to be on a high dose

> of steroids (say 40-50 milligrams a day), be on the Advair, the Singulair

> (or Accolate) and a nasal spray all together for a few weeks and then taper

> off the steroids. Maybe they did it that way. But it seems to me what is

> going on now is NOT working for you ... so you need to find another way.

>

> If you're here in New York (or even if you're not) and you want to talk

> email me and I'll give you my phone number. I can call you back if you're

> out of the area because we have unlimited long distance. If you ARE in the

> area we're going to find you a way to get your medications for lower cost.

> There ARE ways to manage your Samters. You just have to find what works for

> you, and there is something, I'm telling you. There is something. You

> don't need to feel like you're 80. I feel younger than I did when I was

> your age, because I was suffering the way you are. It doesn't need to be.

>

> Hugs

>

> Lori

>

>

>

>

>

>

[Guest guest]

Jessa-

I have more polyp issues with my Samters also. I only wheeze when

my sinuses are filled with polyps or I take ASA, NSAIDS or

acetaminophen. I also have had the thick yellow globs that need to

be removed in the ENT office.

I did do through the ASA desensitiztion program at Scripps in

April. I too found it to be a very pleasant experience. The nurses

were top notch and you do have a private room. Dr. Kennedy at PENN

is my ENT surgeon and he recommended I have the desensitization done

last Nov at Seripps. When I called Scripps the waiting list was up

to April. Dr. Kennedy had me come into the office every month for

debridements and Kenalog injections directly into edematous tissues

and polyps in my frontal sinuses. It was not a pleasant process but

I was able tolerate it knowing it would put my in a better spot for

Scripps. I had four sets of injections and debridements done in the

office. At Scripps, I reacted to 45mg of ASA and I was given

immediate relief with meds. I did not react to Bextra. I stopped

reacting at 650mg of ASA. It was like a light switch was flipped.

At 650mg no reaction and headache relief! What a blessing. I never

take anything for pain so it was a pleasure to have some relief from

ASA.

It has been one month since I have gone to Scripps. I have been

able to tolerate the ASA and I look and feel so much better.

I too have hypothyroidism. It was diagnosed in 2001. I take

Synthroid.

I see Dr. Kennedy next Monday and hopefully I will receive a good

report. I think you see Dr. Thaler at PENN but you may want to ask

to see Dr. Kennedy. He was very willing to try a variety of

treatments to manage my polyps. He performed my third sinus surgery

last July and two weeks post op my polyps returned. He was able to

manage the rapid regrowth with frequent office vists and two courses

of Lamisil and then the Kenalog injections pending my Scripps trip.

As for Scripps, everyone is correct. La Jolla is just beautiful. I

had to check in on Easter Sunday. I flew out the day before Easter

with my husband. We were able to sightsee on Easter and I was able

to go out each night. We shopped and dined out and walked on the

beach, went to San Diego Harbor or hit golf balls at Torrey Pines.

My husband stayed up in Del Mar, which was lovely. It is so

relaxing and nice in Southern CA. I was ready to move!

I wish you the best.

Barb V (NJ)