Re: Hi all - question - Hi Babs

[Guest guest]

-Yes I am on Prednisone. Every time I get below 20 mgs I have a

flareup or some sort of illness. So we are working with that trying

to find what is for sure, the sweet spot with the dosage. I think

we've found it but the pulmo still wants to try to wean down.

He also thinks it is a very good possibility that lupus exists. I

had 1 positive and then 1 negative test last August. November and

December seem to when my disease attacks with a vengeance so we need

to try again during that. That may be the root of all evil.

I am being very careful with my carb count diet and it helps I can't

have wheat gluten of any kind. No cakes or goodies. My downfall is

ice cream and the creamier the better. I just have a taste now

instead of a bowl.

Thanks for the information. I am a thyroid cancer survivor since

1999 so this is a little like old times for me, facing chemo. Last

time it was radiation so this is a little different. But something

is messing with my Synthroid dosage and making my Hashimoto's act

up. So now we know of 4 different autoimmune things going on.

I will definitely ask if he would take it.

S. Lubbock, TX

NSIP w/PF 2006, Celiac, Type II diabetes

-- In Breathe-Support , " Barbara "

wrote:

>

> Ok , here goes. And remember, this is all just MY opinion,

from

> my own experience.....

> But first, are you on prednisone? If so, did they take that into

> account in conjunction with the diabetes? Because once I stopped

the

> prednisone my diabetes disappeared. The doc had gone on and on

about

> how I would never be the same and that within 10 years I would

have

> horrible side effects from the diabetes, that I would be injecting

> insulin, and now my blood sugar is 79 and 80 without drugs.

> As for the Cytoxan..that was the second drug I was put on in an

> effort to slow the progression of my PF. I was on prednisone first

> and it didn't seem to be working so the Pulmo added in the cytoxan.

> As for nasty, yes it is. Remember it's a chemo drug, even if it's

> given in lower doses and in pill form. They also have IV cytoxan.

> I have never felt worse in my life. I was 39 years old and felt

100.

> I got sick over and over again with every little bug that could

find

> me. I lost my hair. I had no energy. I was sent into menopause,

which

> NO ONE had told me would happen. The drug can also cause bladder

> cancer so you have to drink lots and lots of water.

> So, after nearly a year of agony my tests still showed

progression. I

> ended up in the hospital with a lupus flare and my Doc decided to

> stop the cytoxan.

> My hair grew back very dark. Weird. I will never take another drug

> for PF as long as I live because while taking those drugs I am NOT

> living, I am existing. Until they say " here, this pill will cure

you "

> I am toughing this thing out.

> Ask your doctor if HE would take cytoxan or if he would prescribe

it

> for any of his family members. Ask him what the stabilization rate

is

> with cytoxan. Ask him how many of his patients have used this drug

> with good results. Make him give you a list of the side effects.

> There is NO cure for PF. The best they can hope for is to stop the

> progression for a while or slow it. If auto-immune diseases are

the

> reason for the PF they will throw immunosuppressants at you in an

> effort to limit the inflammation, but they don't tell you how

horrid

> the side effects will be.

> I'm sure others have had different experiences with their drugs,

so

> I'll repeat, this is just MY experience and feelings.

> There is no such thing as " normal " after receiving the diagnosis

of

> PF. Every day brings it's own new version of " normal " . Life has to

be

> lived and looked at in a whole new light and luckily humans are

> resilient and capable of adapting.

> I'm not trying to discourage you from trying to fight this

disease,

> but the Western doctors don't always have our best interests at

> heart. I had read what cytoxan does to a person before I took it,

> thinking I would be the success story. Oh how I wish I had heeded

the

> warnings from the gentleman who wrote the article.

> Do your research and be armed with knowledge when you next see

your

> Doc.

> Look up Imuran and ask the Doc about it. I did much better on the

> Imuran than I did on the cytoxan and the side effects are much

less.

> It began to affect my liver so I had to stop taking it too. Plus,

> they didn't see that it was helping with the PF. I also tried

> Cellcept and it didn't work. At which point my Doc admitted that

it

> was all a crap shoot because they didn't have anything that

stopped

> PF.

> Best of luck. I will be praying for you and wishing you much

> endurance and strength in the battle ahead. Remember, we're all in

> this together and we're pulling for you!

> Hugs!

> Babs in Texas

>

>

> >

> > Just back from little trip to Alabama last week. Travel is

> certainly

> > not as easy as it used to be.

> > I had visit with my pulmo doc on Monday. He is considering

cytoxan

> > treatments if I don't stabilize by March. Also he sent me to my

> > internist who added something new to my list of ailments -

unstable

> > Type II diabetes. We are trying 1000 mg of Metformin twice a

day

> with

> > Glipizide but that will change to insulin if that does not

> stabilize

> > within a month.

> >

> > So what is cytoxan like? It looks nasty.

> >

> > Yet again, normal is not what it was yesterday.

> >

> > S, Lubbock, TX

> > NSIP w/PF, Celiac & Type II diabetes

> >

>