janey

Update - Good News For A Change

16 posts in this topic

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

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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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

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Janey, Wonderful Report!

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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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!

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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

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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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

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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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.

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Janey ,

 

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

 

Take care, Everyone.

Margaret

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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.

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Janey SOOOooo glad to hear good news,

Wife


Hugs for All,

 

Julie (Bird Lady)

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Janey,

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

 

Sherion

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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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