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After second opinion visit


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#1 beanie

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Posted 07 December 2008 - 02:12 AM

Well doctor doesn't want to put me on Cytoxin or Imuran. She said that she just came back from a conference and one of the topics was the effectiveness of these drugs and if the slight benefits may warrant the terrible side effects. She said it is so 50/50 for showing such a small improvement in PFTs but in the long run, they don't extend life expectancy any or quality of life. So, she says continue taking care of myself and be patient. That there are some more drugs in study. Guess I am a little relieved. I don't actually feel bad and was scared to take something that may make me feel bad, know what I mean? Also, my liver function tests run slightly high and that would be another thing we would have to watch carefully.

As for my ulcer, she says she thinks it is a calcium deposit. Do you get pain with those? Said to soak it if it hurts and if it becomes too bothersome, she would send me to the wound center. I am trying to keep the end soft with medication and wrapping at night. It is so hard.

Read many posts on Raynaud's. This is the time where it really starts bothering me some. Have put thermal underwear on my holiday list, the silky kind as I think they hold more heat in. Like the idea about the scarf someone had.

Just wanted to post and wish you all a happy holiday season.

Take care,
Michelle

#2 Snowbird

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Posted 07 December 2008 - 03:12 AM

Hi Michelle

Nice to hear from you with your update. It's always such a mixed bag of tricks, isn't it? It sounds like you might be comfortable with your doctors decisions, are you? Wishing you Happy Holiday's too! :)
Sending good wishes your way!

#3 Purr

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Posted 07 December 2008 - 07:38 AM

Michelle,

The silky long underwear is GREAT!!! I got some acouple weeks ago. I also got silky gloves to wear under my regular glove. What a difference.

Christy
Love makes the world go around!

#4 beanie

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Posted 07 December 2008 - 11:45 AM

Snowbird,

Yes, I think I am okay with my doctor's decision. I trust her and I was leery of the treatment, but was going to do it if she felt it was warranted. Maybe something will be available for me someday. Right now, with an 8 and 5 year old, I feel like this is where I need to be right now.

Thanks for the posts.

In much faith,
Michelle

#5 Peggy

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Posted 07 December 2008 - 12:26 PM

I just wanted to post and to tell you that if you are happy with what your doctor wants to do that's what's important. Each decision is a big one and your doctor knows what is best for you. Having faith in your doctor and knowing that they have your best interests at heart is so very essential in this whole process. I will be curious as to what he will use instead in your treatment plan.

Good luck and warm hugs,

Peggy

#6 Snowbird

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Posted 07 December 2008 - 03:29 PM

Hi Michelle

I was hoping that's what you were going to say. I agree fully with Peggy, it is so important to have faith in your doctor and it will help you to focus on everything you need to...when you need to. It sounds like she will do her best to take good care of you and I am happy that you have that as well.
Sending good wishes your way!

#7 canon

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Posted 07 December 2008 - 06:27 PM

Hi Michele,

If you are comfortable with yours and your doctors decision then that is 50% of a plan. It is too bad there are not other medications at this time. You do what you need to do and take care of yourself.

The calcific ulcers can be painful and I too try to keep the skin soft. There is not much for treatment of ulcers either.

Happy Holidays to you too. Will keep you on my faith list.

With gentle thoughts,

Judy
A happy heart is good medicine.