Re: Prednisone Drop + Methotextrate

[Guest guest]

Update on my prednisone drop :

I am seeing my pulmo every two weeks so she can monitor my drop. Starting this week I am down to 5! I have been tired, headaches, and some chest pain, BUT overall feeling pretty good. Yesterday after the doctor wrote down my complaints she said she thought all of them indicated I needed more oxygen. Since last October I have only been only using oxygen for exercise and now I will be using it at all times except rest. I monitored myself with my pulse oximeter all yesteday and she was right. Walking from the front of my house to the back ( it isn't that big-about 30 steps) I drop to the low 80s. Washing dishes, making the bed, same thing. What I was taking to be prednisone withdrawels are actually needing oxygen. I will be on 5 mg for two weeks then drop again. If I can't come off the prednisone without a flareup she is recommending Methotextrate-has

anyone else ever used this? I looked it up online and I am not sure I even want to try it.

Last note- I hate going to the doctors because it is always bad news so I treat myself afterwards even if it is just a small ice cream cone. Yesterday though God treated me! I went for my walk at the beach and at sunset just when the sun was sinking below the clouds, I saw two dolphins playing out just beyond the waves! In the two years I have been living at the beach it is tthe first time I have seen dolphins. All the surfers in the water, and the people walking on the sand stopped to watch -they were just beautiful, jumping high out of the water side by side and racing just under the surface so their top fins showed above. I could have watched them for hours and they reminded me the best part of life is enjoying the world around us and playing when we can. I plan to keep practicing the playing part even if it means I now have to take the o2 with me. God bless you

all-

R. (52) Sarcoid/PF 3/2006 Carlsbad, California>> Bruce,> That's funny. Now that you bring it up the same thing happens to me,though to a lesser extent when I get into my car. Not when I get out,only when I get in. Very very odd....>> Beth> Age 48 Fibrotic NSIP 06/06 UCTD 07/08>> Change everything. Love and Forgive>>>>>> O2 Drop> >> >> > Thanks everyone for the engourament re: my

appt to the new pul. Anew> question I will be in bed at 4 -5 lpm saturation good heart good thenI> turn over and all hell breaks loose. I drop out of breath etc. I am> sure I am not alone with this but WHY? I guess another question for my> list. They told me being a new patient I am allowed 1 hour in there> with him and you know I will be there all 60 mins. Everyone have anice> day.> > Amy> >>

[Guest guest]

, Please read a lot about

Methotrexate...it can cause PF!!!!

You don't need more scarring!

Take care.

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

denise randel wrote:

Update on my prednisone

drop :

I am seeing my pulmo

every two weeks so she can monitor my drop. Starting this week I am

down to 5! I have been tired, headaches, and some chest pain, BUT

overall feeling pretty good. Yesterday after the doctor wrote down my

complaints she said she thought all of them indicated I needed more

oxygen. Since last October I have only been only using oxygen for

exercise and now I will be using it at all times except rest. I

monitored myself with my pulse oximeter all yesteday and she was

right. Walking from the front of my house to the back ( it isn't that

big-about 30 steps) I drop to the low 80s. Washing dishes, making the

bed, same thing. What I was taking to be prednisone withdrawels are

actually needing oxygen. I will be on 5 mg for two weeks then drop

again. If I can't come off the prednisone without a flareup she is

recommending Methotextrate-has anyone else ever used this? I looked

it up online and I am not sure I even want to try it.

Last note- I hate

going to the doctors because it is always bad news so I treat myself

afterwards even if it is just a small ice cream cone. Yesterday though

God treated me! I went for my walk at the beach and at sunset just

when the sun was sinking below the clouds, I saw two dolphins playing

out just beyond the waves! In the two years I have been living at the

beach it is tthe first time I have seen dolphins. All the surfers in

the water, and the people walking on the sand stopped to watch -they

were just beautiful, jumping high out of the water side by side and

racing just under the surface so their top fins showed above. I could

have watched them for hours and they reminded me the best part of life

is enjoying the world around us and playing when we can. I plan to

keep practicing the playing part even if it means I now have to take

the o2 with me. God bless you all-

R. (52) Sarcoid/PF 3/2006 Carlsbad, California

Hi Buce

I hope you are

online today. Geeta is at Disneyland with 3 M6 tanks. Can she get them

refilled when they are empty? I know this is a silly question but I

always drop off my empties with Apria and get new ones- I have never

had them refill the same ones. Thanks-

Sarcoid/PF 3/2006

California

-----

Original Message ----

From: Bruce Moreland <brucemoreland@ gmail.com>

To: Breathe-Support@ yahoogroups. com

Sent: Sunday, August 31, 2008 9:48:08 AM

Subject: Re: O2 Drop

MB

And sometimes mine takes longer to build back up than others. However,

typically, I might be on 3-4 lpm and around 93 or so. I get in the car,

sit, check. Now, still on that I see I've dropped to maybe 90 or 88 or

so, sitting on 3-4 lpm. I can then just watch it rebuild and as it does

I turn it down. Then most of the time I can drive without oxygen

although other times I have to keep a little on. Sometimes it rebuilds

in a matter of seconds after getting in and other times it may take 3 or

4 minutes to completely rebuild.

> >

> > Amy,

> > Wow, you brought up something that has been baffling me also.

I'll

> get into bed at night, my concentrator set at 3 liters. I take my

time,

> get into bed slowly and no matter what I do, it happens. I'll just

get

> myself settled and as you said, "all hell breaks loose". My sats

drop

> and I start to cough. This will go on for at least 5 minutes. I'm

short

> of breath, my sats drop into the 80's and I'm coughing so hard it's

> amazing I don't cough up one or both of my lungs.

> > I suppose it's just that getting settled in bed is just too

much

> activity for 3 liters for me but even that doesn't really make

sense.

It

> all settles down after 5 or 10 minutes and then I'm fine.

> > Does yours just settle down on it's own or do you have to get

up and

> turn your O2 up? This is so frustrating isn't it?

> >

> > Beth

> > Age 48 Fibrotic NSIP 06/06 UCTD 07/08

> >

> > Change everything. Love and Forgive

> >

> >

> >

> >

> >

> > O2 Drop

> >

> >

> > Thanks everyone for the engourament re: my appt to the new

pul. A

new

> question I will be in bed at 4 -5 lpm saturation good heart good

then

I

> turn over and all hell breaks loose. I drop out of breath etc. I am

> sure I am not alone with this but WHY? I guess another question

for my

> list. They told me being a new patient I am allowed 1 hour in there

> with him and you know I will be there all 60 mins. Everyone have a

nice

> day.

> > Amy

> >

>

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[Guest guest]

,

I love love love that you got to see those dolphins. Isn't God great to give you that gift just when you need it? I'm glad that you're getting off the prednisone slowly but surely but sorry that you now need the oxygen all the time. I've gotten used to it now but using it 24/7 was definitely an adjustment. Protecting my body though from the effects of low O2 levels is worth the bother.

I would be a little cautious regarding the methotrexate. It's a great drug but one of the problems with it is an increased incidence of pulmonary fibrosis in patients who are on it. I'm not at all sure whether it can accelerate existing fibrosis. Perhaps not and that may be why your doctor is recommending it but I would question it.

It's a very common chemotherapy drug and is extremely effective (in combination with other drugs) agains many forms of leukemia etc. It's also used to treat several forms of autoimmune diseases with varying degrees of success.

In the meantime just use your O2 and look after yourself!

Love,

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

O2 Drop> >> >> > Thanks everyone for the engourament re: my appt to the new pul. Anew> question I will be in bed at 4 -5 lpm saturation good heart good thenI> turn over and all hell breaks loose. I drop out of breath etc. I am> sure I am not alone with this but WHY? I guess another question for my> list. They told me being a new patient I am allowed 1 hour in there> with him and you know I will be there all 60 mins. Everyone have anice> day.> > Amy> >>

[Guest guest]

Oh just say NO... Love  & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  , Please read a lot about Methotrexate...it  can cause PF!!!!You don't need more scarring!Take care. Z 64, fibriotic NSIP/o5/PAAnd “mild” PH/10/07 and Reynaud’s too!!No, NSIP was not self-inflicted…I never smoked!Potter, reader,carousel lover and MomMom to Darahand Sara      “I’m gonna be iron like a lion in Zion”  Bob MarleyVinca Minor-periwinkle is my flower  denise randel wrote:Update on my prednisone drop : I am seeing my pulmo every two weeks so she can monitor my drop.  Starting this week I am down to 5!   I have been tired, headaches, and some chest pain, BUT overall feeling pretty good.  Yesterday after the doctor wrote down my complaints she said she thought all of them indicated I needed more oxygen.  Since last October I have only been only using oxygen for exercise and now I will be using it at all times except rest.  I monitored myself with my pulse oximeter all yesteday and she was right.  Walking from the front of my house to the back ( it isn't that big-about 30 steps) I drop to the low 80s. Washing dishes, making the bed, same thing.  What I was taking to be prednisone withdrawels are actually needing oxygen.  I will be on 5 mg for two weeks then drop again.  If I can't come off the prednisone without a flareup she is recommending Methotextrate-has anyone else ever used this?   I looked it up online and I am not sure I even want to try it. Last note- I hate going to the doctors because it is always bad news so I treat myself afterwards even if it is just a small ice cream cone.  Yesterday though God treated me!  I went for my walk at the beach and at sunset just when the sun was sinking below the clouds, I saw two dolphins playing out just beyond the waves!  In the two years I have been living at the beach it is tthe first time I have seen dolphins.  All the surfers in the water, and the people walking on the sand stopped to watch -they were just beautiful, jumping high out of the water side by side and racing just under the surface so their top fins showed above.  I could have watched them for hours and they reminded me the best part of life is enjoying the world around us and playing when we can.  I plan to keep practicing the playing part even if it means I now have to take the o2 with me.  God bless you all- R. (52)  Sarcoid/PF  3/2006   Carlsbad, California--- On Wed, 9/3/08, Peggy   wrote:Subject: Re: Re: To: Breathe-Support Date: Wednesday, September 3, 2008, 5:58 AM, Travel safely, Enjoy your family. I am so envious of you going back to school. I think that is wonderful.So who wound up with the traveling Bible ? That was so funny. Are you enjoying yours ?I just love the picture of you and Geeta. Are you going to see her again before she goes back home ? Had she been to the US before? God Bless You on your travels.<part1.09070107.01050909>Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."Hi Peggy,   I am doing great!  This is my first full week on just 5 mg prednisone.  So far I haven't had any major problems.  I started school today and will be traveling to South Dakota the last week of September to see my oldest son and grandkids.  Hope you are feeling better.  I just love seeing your smiling sunshine flower-it makes me smile all day!  Take care of yourself and God bless you- R. (52)  Sarcoid/PF  3/2006   Carlsbad, California--- On Tue, 9/2/08, Peggy   wrote:Subject: Re: .. Re:important oxygen questionTo: Breathe-Support Date: Tuesday, September 2, 2008, 7:41 AM, When you travel with tanks you just swap them out. ALL tanks are universal and all companys will take them and give you full ones. I was told this by my supplier here, in Tampa and in Tn. So just tell her to call whomever she is dealing with and they will give her full tanks without a problem. If you have a lot of them on hand you can swap them out with her. I now have 24 E tanks. I remember getting 2 a month.Wow how things change.. QUICKLY.. How are you ? Breathing better ? Do you still go down the beach ? I am thinking of asking my son to take me to Boca where Kayla took those pictures so I can get some sand between my toes. When the weather is cooler.. <Sun Flower.gif>Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."Hi Buce   I hope you are online today.  Geeta is at Disneyland with 3 M6 tanks. Can she get them refilled when they are empty?  I know this is a silly question but I always drop off my empties with Apria and get new ones- I have never had them refill the same ones.  Thanks-    Sarcoid/PF  3/2006   California O2 Drop> >> >> > Thanks everyone for the engourament re: my appt to the new pul. Anew> question I will be in bed at 4 -5 lpm saturation good heart good thenI> turn over and all hell breaks loose. I drop out of breath etc. I am> sure I am not alone with this but WHY? I guess another question for my> list. They told me being a new patient I am allowed 1 hour in there> with him and you know I will be there all 60 mins. Everyone have anice> day.> > Amy> >>

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[Guest guest]

,

Thanks for the reply. I did spend yesterday looking up the side effects and was not pleased. Unless someone on the board has had great results with it my gut reaction is to say no. At the very least I am going to get a second opinion from the other pulmo on the transplant team. Take care - R. (52) Sarcoid/PF 3/2006 Carlsbad, California>> Bruce,> That's funny. Now that you bring it up the same thing happens to me,though to a lesser extent when I get into my car. Not when I get out,only when I get in. Very very odd....>> Beth> Age 48 Fibrotic NSIP 06/06 UCTD 07/08>> Change everything. Love and Forgive>>>>>> O2 Drop> >> >> > Thanks everyone for the engourament re: my appt to the new pul. Anew> question I will be in bed at 4 -5 lpm saturation good heart good thenI> turn over and all hell breaks loose. I drop out of breath etc. I am> sure I am not alone with this but WHY? I guess another question for my> list. They told me being a new patient I am allowed 1 hour in there> with him and you know I will be there all 60 mins. Everyone have anice> day.> > Amy> >>

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