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Update - Good News For A Change


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15 replies to this topic

#1 janey

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Posted 09 August 2007 - 04:47 PM

Well, I think things are finally getting back to where I was in December, prior to going sepsis. My rheumatologist and pulmonologist have been very diligent in monitoring everything and seeing me regularly. I've had monthly appointments and periodic tests with them both.

Long story made short - I convinced them to let me go on Cellcept rather back on oral Cytoxan (I hate that stuff!). My IVIg infusions were begun again in April at once per month. As of yesterday, my liver enzymes are back to normal, my CPK and CPK-MB (skeletal and heart muscle enzymes) have drastically reduced (1600 to 349 / 66 to 16, respectively), my pft numbers increased "some" (I'll take it!), my PA pressure has gone from 45 to an estimate of 28 (from the ECHO) and I'm having to use my supplemental oxygen less and less. In fact, I went to sea level a couple of weeks ago and didn't use it except at nights. When I got home (I live a mile high),I felt like I was going through altitude sickness, but that lasted one day only. All in all, I feel the improvements. Quality Of Life (QOL) improves everyday!

I get a chest x-ray next week to check on my lungs and see the cardiologist at the end of the month. he'll check my pacemaker and do an EKG to see how my flutters and fibs are doing. I'm confident, I'll have more good news.

Yesterday my rheumatologist said that sometimes people with scleroderma go into spontaneous remission with no explanation. That's why clinical trials are so difficult. A sudden improvement could be due as much to the disease as to the medication. Wouldn't spontaneous remission be wonderful! I wish it for us all.

Big Hugs,
Janey Willis
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#2 emmie

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Posted 09 August 2007 - 04:56 PM

Janey,

I am thrilled to hear all this good news from you. In fact, I'm bowled over!!! Cellcept has been good for both my lungs and skin; I've heard the same for many others. The side effects are much less toxic than the cytotoxin as your case so dramatically and frighteningly (is that a word??) showed us!

Keep it up and let us know how things go with the cardio guys and your ticker. We'd like to hear that it's nice and regular, please.

xoxo emmie

#3 peanut

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Posted 09 August 2007 - 05:34 PM

Janey, Wonderful Report!

peanut

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my HMO makes me wear a helmet...

#4 Sharonvandee

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Posted 09 August 2007 - 06:13 PM

Dear Janey

So good to hear you are feeling better....I hope you continue to improve.

Spontaneuous remission for all would be a modern wonder of the world and a welcome break for many
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#5 jefa

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Posted 09 August 2007 - 08:53 PM

Aw, sweetie, this is wonderful news. It is so good to hear that things are looking up for you, especially after last year's scare (and the ones before). Quality of Life is a VERY big deal. My thoughts are with you every day. You are one of my favourite role models, you know. :)
Warm wishes,
Jefa

Carrie Maddoux
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#6 Shelley Ensz

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Posted 10 August 2007 - 01:28 AM

Janey, I'm thrilled to hear of your improvements! As your rheumatologist said, spontaneous remissions do happen very often with scleroderma. In fact, that's what messes up so many of the clinical trials that they can't tell until the last stages of the trials whether it is the medication or the spontaneous remissions responsible for the marvelous improvements.

Maintaining such a positive attitude through everything, like you do, at least helps reduce some of the negative effects of stress on illness. And it seems you have a great treatment plan worked out, too. It sounds like a win-win combination!
Warm Hugs,

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

#7 Patty

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Posted 10 August 2007 - 01:55 AM

Whoooooo Hooooooo Janey!!! I am thrilled to hear your wonderful news. It could not happy to a nicer person!

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#8 Margaret

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Posted 10 August 2007 - 02:20 AM

Janey ,

So happy to hear that life is getting brighter for you. It's good to 'be happy' !!!

Take care, Everyone.
Margaret

#9 scleroguy

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Posted 10 August 2007 - 05:10 AM

Great news Janey. My thoughts are with you.

Best wishes,
Ron

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

#10 epasen

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Posted 10 August 2007 - 06:27 AM

Nice to hear everything's going okay now <:

#11 Bird Lady

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Posted 10 August 2007 - 07:01 AM

Janey SOOOooo glad to hear good news,
Wife
Hugs for All,

Julie (Bird Lady)

#12 Clementine

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Posted 10 August 2007 - 08:23 AM

Awesome Janey!
Love,
Jen

#13 Sherion

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Posted 10 August 2007 - 01:13 PM

Janey,
What wonderful news!! It's always nice to get positive reports. Also glad to hear you're feeling better.

Sherion

#14 WestCoast1

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Posted 10 August 2007 - 01:48 PM

Yeah Janey,
I am SO glad to hear that you are getting better and better. Keep up the good work.
:D
*WestCoast*

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#15 Sweet

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Posted 10 August 2007 - 03:51 PM

Oh my goodness Janey that is so wonderful! You deserve to feel a bit better for once!

This gives us all hope in one sense or another.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#16 barefut

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Posted 10 August 2007 - 06:30 PM

Thank you for sharing your good news Janey! My heart did little leaps of joy while reading your post.

Love,
Barefut