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Finally - Off Pred!

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#1 millerscrossing


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Posted 15 October 2007 - 07:56 AM

And lost 25 lbs in the last 5 weeks and intend to continue. It was real easy this time round coming off the 2.5 pred, because I had a supply of calmers if I needed them and I didn't....

So from 60 mg in December 06 to 0mg in October 06 and my breathing is better now than then - go figure!

A couple of really important questions...

Has anyone heard of the negative impact Wellbutrin can have on auto immune disorders and secondly - more importantly, what is the story with alcohol??

Take Baileys for example, can I have a couple of glasses of this in the evening, or is any alchohol a big no no, given the vast array of drugs I am taking because of this diasese???

Cheers everyone


#2 jefa


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Posted 15 October 2007 - 08:53 AM

Congratulations on the successful weaning, James, and also the weight loss. I hope you continue to do well getting back into shape. As for your question about the alcohol, I would strongly urge you to avoid drinking it. It may seem harmless enough, but it is really not good for you. It can disrupt sleep, cause heartburn, induce Raynaud's attacks and interact with medications (It can strengthen any interaction between your other meds). I don't know about Wellbutrin, but alcohol is a depressant, not something any of us needs. Given all the possibilties for problems, why tempt fate? When I first got sick, I continued to have a glass or two of wine several times a week. While I was on an elimination trial to figure out the triggers for my reflux attack, I quit drinking the wine for a couple of weeks. I was amazed how much better I felt after stopping. I had been waking up nearly every morning in the early hours, too. When I stopped drinking, my skin improved, my sleep patterns improved, my reflux improved and I have felt brighter and clearer of mind. As for weight loss, alcohol has calories that are geared to be burned for immediate use so that any excess from your normal food will be stored as fat. Discover water. I am enjoying it much more than I ever did. I have also virtually eliminated caffeine and all carbonated drinks.
Warm wishes,

Carrie Maddoux
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#3 Shelley Ensz

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Posted 15 October 2007 - 10:01 AM

Hi James,

Carrie hit the nail on the head all 'round about alcohol and scleroderma. Alcohol, caffeine, and nicotine all can cause and worsen many of the symptoms of scleroderma and interact with most of the meds we are on. Unfortunately, there is simply nothing beneficial about alcohol for people who have scleroderma.

If you want to cause (or worsen) the symptoms despite knowing this, please check with your doctor and pharmacist regarding which of your meds the alcohol will interact with. Odds are fairly good that you are probably on at least one drug that urges caution or completely prohibits alcohol.

Carrie is also "right on" about drinking water! I focus on drinking lots of water...there is nothing better for our health than replacing fluids that can harm us with fluids (plain water) that can help us. This a small way that we can have a positive, and sometimes dramatically positive, influence on our symptoms.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 Maddy07


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Posted 15 October 2007 - 10:19 AM

Congrats on the wean! I'm down to 7 mgs of Pred and am sooooo close to being off of it. I envy you!

38 yr old mommy to 2 boys
Raynaud's, CREST diagnosed '96
Pulmonary Hypertension diagnosed Oct '07
GERD, Inefficient Esophageal Motility diagnosed Jan '09

#5 janey


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Posted 15 October 2007 - 10:22 AM

Congratulations!!!! I'm sure that 9 months felt like forever! I'm tapering off 5 mg and am rounding out the first month at alternating 5 / 2.5 mg. Next week I go to 2.5 mg a day - for a month. You know the drill. So congratulations on your patience, you success and your weight loss. That's all simply marvelous.

I have to agree with Jefa and Shelley on the alcohol thing, even though I don't want to. :D I couldn't drink alcohol for the 3 years I was on methotrexate. Once I got off it, I "tried" wine again. WOW - it would hit my stomach and instant heartburn and that annoying heartburn cough. Hard liqueur does the same. However, I did make a discovery that works for ME, but may not work for others. Every afternoon around 5, I get that reflux cough and I have 2 more hours before taking another Prevacid. Now I drink a half a bottle of wheat beer and it settles my stomach and totally calms the cough. It's amazing because it shouldn't, but for me it does. So now my hubby pours me up a short glass of beer each day around 5. I don't have to remind him because my coughing does. My rheumatologist doesn't believe me so next time he brings it up, I'm inviting him out for a beer. :)

Big Hugs,
Janey Willis
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#6 millerscrossing


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Posted 15 October 2007 - 10:47 AM

Thanks everyone,

My breathing got much better recently except for four days when it got really bad again, I was drinking a lot of alcohol and I had a cold - The addict within me put it doiwn to the cold, and of course once the cold cleared it got better, but I had also stopped drinkining just in case....

TBH - I dont think the cold made things that terrible - real shortness of breath just from a mild cold?? I was drinking Baileys with Vodka and passing out - so, I am guessing the real culprit was the alcohol......

But now, I am trying to compromise with my health - what if I have the baileys without the vodka??? Surely thats ok - I won't pass out or anything like that.....,why do I feel like I should be at an AA meeting??

I think the alcohol is symtomatic of other issues - such as acceptance of my diasease.......anyway I have stopped for now.....have met a wonderful women who has accepted me for who I am and more importantly for what I may become....and that is making a huge difference for me - the unquestioning support, the loneliness gone, she loves my sense of humor, dark though it may be.....

But I feel really lucky to have met someone who has accepted me and my diasease - maybe because its in its very early stages or maybe I should stop rationalising why and enjoy it for what it is!!!

To all of you coming off pred I wish you only the very best of luck........

Warm regards to all

#7 WestCoast1


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Posted 15 October 2007 - 06:04 PM

Thanks for the update. I am happy for you that you have found a place of peace and are able to enjoy life a little more. Even more important, you are feeling okay after coming of of Pred. and to top it off, you were able to lose some lbs.

Great news! Keep up the good work.


#8 Sweet


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Posted 19 October 2007 - 01:30 PM

James, that is terrific! Really happy for you, way to go! Now take good care of yourself. :) Unfortunately that will mean you need to cut the drinking down or cease. I know you don't want to hear that, but I just care.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)