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Shrinking lung syndrome


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#1 JG07

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Posted 14 November 2008 - 03:36 PM

I have read over and over that prednisone should never be used in someone with systemic sclerosis - I have had no choice due to my severe lung problems - to go for 2 days of high dose IV steroids - which has now been diagnosed as shrinking lung and I have now been diagnosed with lupus along with everything else. I am terribly upset as I have a great attitude and always look on the bright side. But the imuran and cellcept have not worked and I have been referred to John Hopkins to doctor. Wiggly. After looking at my records and through my rheumatologist he suggested the steroids with possible IVIG - and depending on the outcome, cyclophosphamide. I will not be able to get in to see him until after January. I feel very torn about these treatments. I have been told in these past 2 days that I have an extremely rare case. I don't want to take the steroids. It is only for 2 weeks. I know it cannot possibly be the answer and it will not stop progression. I just don't want to mask a problem that has gotten so much worse in a very short time. Major changes in PFT from May through October. Any info would be great. I will not give up. I am only 52 and married for 35 years with 2 daughters and grandchildren



#2 canon

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Posted 14 November 2008 - 05:33 PM

JG07,

Sorry you are dealing with so much. You sound very brave and don't give up. I am at a loss for words though but wanted to give some support. Perhaps if you have a regular medical doctor or nurse practitioner who might be able to help you weigh the pros and cons of the treatments that have been suggested. There probably is someone here that has had to make a similar decision that could help too. Will keep you in my thoughts.

With gentle thoughts.

Judy
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#3 debonair susie

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Posted 15 November 2008 - 01:06 PM

Hi JG07,

I'm sorry you are having a difficult time with your health.
Moreover, it is never easy for a person to take such treatments...lightly.

For a while after I was diagnosed with Scleroderma, the rheumatologist I was seeing...at the time, wanted me to take Prednisone, only longterm, to which I quickly declined.

However, my husband has had great results from Pred. He has COPD withan asthma component and chronic bronchitis. He takes it only when he has a lung infection and usually sees benefit within 14 days...21 if it's a bad infection. It really works on the inflamation and really eases his breathing.

Since 1999, when he was diagnosed, he's only needed to be hospitalized twice...both times Prednisolone IVG...was used, which is very fast-acting, which is what I THINK you might be referring to for your treatment?

It IS good you are researching this, because I really believe in proadvocacy! I really hope you are able to get the information you are looking for, helping you feel comfortable with the decision you make for yourself.

Please let us know how you're doing?

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#4 Amanda Thorpe

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Posted 15 November 2008 - 01:12 PM

Hello JG07

I am sorry things are so tough for you right now. You're getting good care and no doubt have loads of family support.

I was on prednisilone low dose, for EM, for a number of months. You are right they don't like giving it in cases of SSc but they do use it.

I hope you are able to make the best decision for you, it's a hard call with so many variables beyond your control.

I am sorry things are progressing as they are for you, please let us know how things go

Take care.

Amanda
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#5 Peggy

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Posted 15 November 2008 - 01:57 PM

I'm so sorry for what you are having to deal with. However, reading your post scares me as we seem to have a lot in common. I am presently on Cellcept and am taking IVIG therapy. My lung involvementh is worse and in January the doctor wants me to start on methotrexate, which confuses me more as some here say that it's bad for the lungs. When I was first diagnosed I was on prednisone and had to quit it as I had a reaction to it. Then I was put on cyclophosphamide and had to quit that after 4 months as I developed cystitis of the kidneys/bladder.

Your fighting spirit is what will get you through this and will help you make the right decision for "you". You are doing the right thing in researching to see what the best route to take is. You will be guided by your heart in what to do. Please keep up the fight and don't give in and you will beat this! You have great doctors who will guide you through it.

Please keep us posted on how you are doing.

Warm hugs,

Peggy



#6 JG07

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Posted 20 November 2008 - 03:24 PM

Have been given orders today to start IVIG on Monday & Tuesday - very scared about the whole process - Hope this works - keeping positive ...

#7 Peggy

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Posted 21 November 2008 - 05:16 AM

Good luck on your IVIG. I go in the following Monday, Tuesday and Wednesday for my treatments and like you, I am dreading it. Bring things to read or if you knit or crochet bring that as they get to be a really llllllooooooonnnnnnnnngggggggggggg day(s).

Good luck and let us know how they went.

Warm hugs,

Peggy

#8 Sheryl

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Posted 21 November 2008 - 09:30 AM

JG07 and Peggy, I hope your IVIG goes well and you both see some results with this treatment. Stay busy so time won't feel like it is standing still. You want it to fly by so take several different things to keep your mind and or hands occupied. I'm wishing you the best. You will both be done in plenty of time to enjoy Turkey day.
Strength and Warmth,
Sheryl

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