Re: Carol Giordano - Susiecue and Sandy

[Guest guest]

Hi Susiecue and Sandy,

Thanks for letting me know this affects you too! My Dr. did give me an Rx for a water pill (I didn't even look to see what it is yet), but he wants me to wait til we see what might be going on. He's in favor of trying to find the root of a problem rather than just treating the symptoms - which I agree with. I also have had low back pain which he thought was muscular, and has gotten worse each day, along with the headache, swelling and weight gain. I'm up to 9 lbs in 5 days! I'm swollen everywhere! And my headache keeps getting worse. I have Ultram for the pain, but if I take it too much, it makes me a little too "loopy".

I don't know anything about Imuran. I'm on Pred Na Dapsone now. My Rheumy is still talking about trying Methotrexate. I asked him about it Wed., and he said "we're getting close". I'm not sure if I want to try it or not. It sounds a little scary from what I've read. Well, I guess I have to do what it takes to get this stuff (cRaP) under control.

I think I'll tell my Rheumy what you two said about the water pill before I have the rx filled, that is if he says to go with it. It's just so hard to know what's right and what's wrong. I'm so glad you guys are there to give us advice and everyone can share. It helps so much.Thanks for being there, and sorry about the rambling. It's 4:00am, and I'm on a pred high.

Susiecue, I hope you are feeling better. It sounds like we really have alot in common.Please keep in touch. Hopefully we can help each other.

Sandy, thanks for being there, too. I read what you said about not being dx for 10 yrs. For me it was 4, and that was way too long, I can't imagine it for you. I hope the diabetes doesn't cause you too much trouble. I was wondering how long you were on the steroids before you acquired it? It's a concern of mine that could happen to any of us.

Please stay in touch, both of you. Know my thoughts and prayers are with you. Love, Carol G

Re: Carol Giordano

Susiecue & Carol,

I also have swelling of the ankles and feet from the Pred. My previous PCP put me on a water pill, but when I saw my Pulmonologist and told him I was taking it, he told me to stop. He said the water pill also flushes out the Meds we are taking to fight the RP. I just live with the swelling.

Hugs,

Sandy

HI Carol:

I am down to 40 mg today from 60 mg of pred and on Imuran. I have almost all the side effects that are listed for the pred & then some. I also am having problems with swelling. My feet & ankles are swelled worse than they were when I had toxemia with my last child. I have asked both my PCP & rheumy about a water pill & neither want to give me one. Some days my feet feel like they want to split open. I also have lower back problems which my pcp thinks is muscular. I cannot stand or walk more than 5 minutes. I have had headaches the last couple of days also. I'm wondering if my body does not like the fact that I am lowering the pred & the Imuran is trying to take over. This is so frustrating. I would give the world if only my back would get better & I could at least get out a little.

I'm sure we're not the only ones having swelling problems. Just wanted to let you know you are not alone.

Luv ya,

SusiecueDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Carol G.,

I developed Diabetes 6 months after starting high doses of Pred (60mg. a day). I take Glucovance 2x a day. I am happy to say my blood sugars have been excellent for 3 months now.

Glad to be of help.

Love,

Sandy

Sandy, thanks for being there, too. I read what you said about not being dx for 10 yrs. For me it was 4, and that was way too long, I can't imagine it for you. I hope the diabetes doesn't cause you too much trouble. I was wondering how long you were on the steroids before you acquired it? It's a concern of mine that could happen to any of us.

Please stay in touch, both of you. Know my thoughts and prayers are with you. Love, Carol G

Re: Carol Giordano

Susiecue & Carol,

I also have swelling of the ankles and feet from the Pred. My previous PCP put me on a water pill, but when I saw my Pulmonologist and told him I was taking it, he told me to stop. He said the water pill also flushes out the Meds we are taking to fight the RP. I just live with the swelling.

Hugs,

Sandy

HI Carol:

I am down to 40 mg today from 60 mg of pred and on Imuran. I have almost all the side effects that are listed for the pred & then some. I also am having problems with swelling. My feet & ankles are swelled worse than they were when I had toxemia with my last child. I have asked both my PCP & rheumy about a water pill & neither want to give me one. Some days my feet feel like they want to split open. I also have lower back problems which my pcp thinks is muscular. I cannot stand or walk more than 5 minutes. I have had headaches the last couple of days also. I'm wondering if my body does not like the fact that I am lowering the pred & the Imuran is trying to take over. This is so frustrating. I would give the world if only my back would get better & I could at least get out a little.

I'm sure we're not the only ones having swelling problems. Just wanted to let you know you are not alone.

Luv ya,

SusiecueDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

<P>Happy St. 's Day (I hope) to you all.</P>

<P>

I don't know if it's wanted or not, but I thought I'd throw in my two cents

worth here on the diuretic approach to fluid retention.  I found that by

reducing and/or eliminating sodium in my diet, I was able to solve the swelling

problem without taking yet one more pill.  I had to consciously make a

life-style change with regard to what I eat, but it's been worth it and I feel

soooooo much better.  I make all my own food and don't add any salt.  I dine out

with my family or friends, but I eat at home first and just order tea at the

restaurant.  I know this makes me a " fanatic " but it's my body and my health

here.  </P>

<P>If you haven't yet read " Coping with Prednisone " by Eugenia Zuckerman and

Ingelfinger, M.D., I highly recommend it.  I wish I'd read it sooner

before I gained weight from the Prednisone urges to eat everything that didn't

move.  One of my doctors calls it the 'overactive fork syndrome'.  Since I made

these dietary changes, I've quit gaining weight, can wear my rings and see my

eyelids again! But no matter how much I exercise, I can't take it off. The

dietrary nutrition director at a local hospital helped me put together a diet

plan but said with all my meds the most I could lose was 1/4 pound a week IF I

was lucky.  I'm confident that I'll lose this extra 25 pounds when I get off

Prednisone, but I look and feel distorted (round-face, buffalo neck, and what

looks like a beer gut).  Oh to be healthy again, huh?

Take care and enjoy the weekend.

(KC)

<BR><BR><BR><BR></B> Re: Carol

<BR>Giordano</DIV><BR>

<DIV><BR></DIV><BR>

<BLOCKQUOTE <br>style= " BORDER-LEFT: #000000 2px solid; MARGIN-LEFT: 5px;

MARGIN-RIGHT: 0px; PADDING-LEFT: 5px; PADDING-RIGHT: 0px " > <BR>

<DIV><FONT face=Arial size=2>Susiecue & Carol,</FONT></DIV><BR>

<DIV><FONT face=Arial size=2>I also have swelling of the ankles and feet

<BR>from the Pred. My previous PCP put me on a water pill, but when I saw my

<BR>Pulmonologist and told him I was taking it, he told me to stop. He said the

<BR>water pill also flushes out the Meds we are taking to fight the RP. I just

<BR>live with the swelling.</FONT></DIV><BR>

<DIV> </DIV><BR>

<DIV><FONT face=Arial size=2>Hugs,</FONT></DIV><BR>

<DIV><FONT face=Arial size=2>Sandy</FONT></DIV><BR>

<DIV> </DIV><BR>

<DIV> </DIV><BR>

<DIV><FONT size=2>HI Carol:</FONT></DIV><BR>

<DIV><FONT size=2></FONT> </DIV><BR>

<DIV><FONT size=2>I am down to 40 mg today from 60 mg of pred and on

<BR>Imuran.  I have almost all the side effects that are listed for the <BR>pred

& then some.  I also am having problems with swelling.  <BR>My feet & ankles are

swelled worse than they were when I had toxemia <BR>with my last child.  I have

asked both my PCP & rheumy about a <BR>water pill & neither want to give me

one.  Some days my feet feel <BR>like they want to split open.  I also have

lower back problems which my <BR>pcp thinks is muscular.  I cannot stand or walk

more than 5 <BR>minutes.  I have had headaches the last couple of days also. 

I'm <BR>wondering if my body does not like the fact that I am lowering the pred

<BR> & the Imuran is trying to take over.  This is so frustrating.  <BR>I would

give the world if only my back would get better & I could at <BR>least get out a

little.  </FONT></DIV><BR>

<DIV><FONT size=2></FONT> </DIV><BR>

<DIV><FONT size=2>I'm sure we're not the only ones having swelling

<BR>problems.  </FONT><FONT size=2>Just wanted to let you know you are not

<BR>alone.</FONT></DIV><BR>

<DIV><FONT size=2></FONT> </DIV><BR>

<DIV><FONT size=2>Luv ya,</FONT></DIV><BR>

<DIV><FONT size=2></FONT> </DIV><BR>

<DIV><FONT size=2>Susiecue</FONT></DIV><BR><BR><TT>DISCLAIMER!!<BR>WE ARE

<BR>NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE

<BR>IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING

<BR>ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND

<BR>ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE

<BR>DIFFERENT FOR MANY OF US. THANK YOU</TT> <BR><BR><TT>