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No longer "sine" have moved to Diffuseland


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#1 red

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Posted 21 July 2011 - 01:58 PM

Saw rheumatologist yesterday for 2 month follow up since starting on new medicine for the sarcoidosis (skin lumps and enlarged nodes/lesions in lungs) I developed this past year. There's no improvement yet, although he did warn me that it may take 6 months or more for the med to start working. In fact, I was complaining that my upper chest feels worse, and it's difficult to take a deep breath.

After listening to my lungs and heart, he examined and pinched the skin over my upper chest, and informed me that I have some tightening here, along with some tightening on my face and across my palms/wrists (where I think I've had for awhile, but before yesterday, he's said that these areas were normal). My one shoulder is getting worse too, quite limited in range of motion and very crunchy-sounding, which he thinks might be a rotator cuff tear, so I need to go back to the ortho doctor to evaluate for possible surgery.

My rheumatologist says he has another med "in his back pocket" for me to try if this new medicine isn't turning the lungs around by October. But my pulmonologist says if there is no lung improvement by August, no more waiting, I will go on prednisone.. and my primary agrees. I don't want to get caught in the crossfire!! I trust my rheumatologist, but I'm all for a short month or two on prednisone to get some improvement while we find another long-term medicine that works.

Anyway, I won't be in chat room tomorrow . I will be having my esophageal endoscopy and colonoscopy, so y'all know where I'll be spending the evening! :blink: Wish me luck, really don't want any more bad news.

Thanks for your support, it's great to have you all here for a pity party every now and then!

For all my USA folks - stay cool and safe! It's quite a heat wave, isn't it? At least the endoscopy room will be well air-conditioned for me!

Red

#2 Shelley Ensz

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Posted 21 July 2011 - 02:23 PM

Hi Red,

I'm very sorry to hear that things have devolved into diffuse scleroderma for you. That's just more to deal with, isn't it?

I'm sure you've been around long enough to hear the ample Warnings about Prednisone and Scleroderma, but you know, we try to bring them up at every mention of prednisone (steroids) in the hopes that it will save some lives from being lost unnecessarily around here. Luckily there may be some other, and more effective, alternatives available to you so do pay special attention to your rheumatologist's input if/when it comes to making a medication change.

I'm sending lots of extra warm hugs, just for you -- because I'm in the USA and it is blistering hot here, no cool hugs in sight!
Warm Hugs,

Shelley Ensz
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#3 Amanda Thorpe

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Posted 21 July 2011 - 02:36 PM

Hello Red

Welcome to Diffuseland...I've been here for 4 years you late comer you! :emoticons-line-dance:

It's difficult if your specialists have different ideas about medications, I hope they come to a friendly agreement!

Might as well have all your "oscopys" in one go and get it over with eh? Pity about the prep, I remember it well even though it was years ago...never again! :blink:

Take care and keep posting.
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#4 Joelf

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Posted 21 July 2011 - 03:45 PM

Hi Red,

Sorry to hear that you're now suffering with Diffuse Scleroderma and you haven't had any noticable improvement in your lungs yet. I do hope your consultants can find a satisfactory medication to help you.

Good luck with your endoscopy and colonoscopy tomorrow and I do hope you'll be feeling much better when we next meet in the chat room.

I'm sending you a warm :emoticons-group-hug: but the rest of the UK is distinctly chilly. I'm afraid we're not having a heatwave here at the moment; we've had our warm weather in April and are now experiencing a typical English summer of cold, damp weather in July! :(

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#5 miocean

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Posted 21 July 2011 - 09:55 PM

Hi Red,

:emoticons-line-dance: Welcome to Diffuseland, a world of ever changing possibilities! :emoticons-line-dance:

Its time for a Pity Party

Did you know there is an entire section of ISN for this? Click on the link. While you're using up all your toilet paper tonight or home tomorrow taking it easy, have a read and a good laugh! :lol:

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#6 Jeannie McClelland

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Posted 22 July 2011 - 07:48 AM

Hi Red,

I'm sorry we can't be 'sine' sisters anymore. I'm still coming to the Pity Party though, wouldn't miss it for a bet. Since it's potluck, is there anything special you'd like me to bring? Y'know, we aren't really limited to bringing foods nobody can eat anymore since the dish full of after-dinner mints is now full of antacids. (I think Shelley got the mixed fruit flavored ones!) See you there!
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#7 debonair susie

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Posted 22 July 2011 - 11:10 AM

Hi red,

I was really hoping for better things for you, in this regard.
I also was wishing for your medication to be helping you, by now. Hopefully, your doctor IS able to find a good treatment plan for you.
Oh, I sure hope it isn't a rotator cuff tear. Whatever the treatment, I hope it can feel better soon.



Thinking of you and hope that both your upper endoscopy, as well as your colonoscopy show nothing :emoticons-group-hug:

We missed you in chat, but also knew you wouldn't be there, due to these tests.

May you have a good weekend, despite all of this.
Special Hugs,

Susie Kraft
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#8 Sweet

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Posted 22 July 2011 - 11:33 AM

Hi Red,

Thanks for the update, but I sure wish it was different than you say. Hang in there and no we are here for you. :emoticons-group-hug:
Warm and gentle hugs,

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#9 Chopper

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Posted 22 July 2011 - 02:15 PM

Wow, Red, sorry to hear that! I think I've read of a couple around here where their types have changed. Another reminder of it's unpredictability. The other commenters made made smile, how fortunate you are in good company. Just be sure to ask the doctor to use the tube on your throat first...

Chopper
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#10 Snowbird

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Posted 22 July 2011 - 06:17 PM

Hi Red,

I'm sorry to hear that too and I'm in for the pity party as well. After all, no need to go alone when you have so many friends here to take with you. :P

Wishing you good luck with your scopes!

Good one on which scope to do first by the way Chopper. :D
Sending good wishes your way!

#11 red

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Posted 23 July 2011 - 05:50 AM

Thanks for all your support, I really appreciate it! hot :emoticons-group-hug: for your all!

I do enjoy a good pity party now and then, but like to keep them short and sweet, am ready to face things and see where my journey goes from here.

Yesterday went ok, nurses were a bit concerned when my O2 sat was only 95% just sitting, but it came up promptly to 99% on oxygen. And yes, fortunately, doctor did the upper scope first, lol -- or at least he said he would, don't remember any of it :emoticons-yes: for conscious sedation!

Doc said he biopsied the "irregular Z line" and a polyp he found in the stomach - I had both these findings on my first endo a couple years ago, and the biopsies were ok then, so I'm not too worried there. No sign of esophageal erosions this time tho, the fundoplication is still intact and the colonoscopy only showed wide-mouthed diverticula, which also were there last time, but no polyps this time, so all-in-all, GI tract is looking ok.

Amanda and mioceon, thanks for the welcome to Diffuseland, I have great new neighbors! :thank-you:

It's wonderful to be part of such a caring online family, thanks again. And my local family here, also took good care of me, they even did the dishes for me yesterday!! Wonder if I can get them to do that everyday...

PS We had some good thunderstorms this morning here (New York State), so things have cooled just a bit, down from upper 90's of the past 2 days, expected high of "only" 94 today. :o Thank goodness for air conditioners!

Stay safe!

Red

#12 debonair susie

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Posted 23 July 2011 - 10:16 AM

Thank you for sharing your results of yesterday's scopes. Am pleased to read that all went as well as it did :high-five: (Oh, that Chopper, what a character! That's why I've always felt it's a good idea to stay on the GOOD side of the gastros, if you know what I mean)! :blush:

(You know, you could have the doctor write a "script" for no dishes for -- days, no housework, whatever "else" you would like a "vacation" from ;) )! At any rate, it was nice of your family to pitch in and help you out!

We had some very loud thunder that produced only a bit of rain, yesterday. However, like your temperatures, ours also cooled down for the evening, which was nice!

Have a good weekend, red and hope you are able to join us in chat next week!
Special Hugs,

Susie Kraft
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#13 susieq40

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Posted 26 July 2011 - 08:30 PM

Hey Red,

So sorry to hear that you are now having Diffuse Sclero problems. How long were you just Sine Sclero? I'm still Sine, only diagnosed Sine since 2009. I sure hope things progress SLOWLY for you!

Super Soft Hugs, :emoticons-group-hug:

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#14 red

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Posted 27 July 2011 - 07:28 AM

Hi Susieq,

It's nice to hear from you, hope things are going okay for you. Thank you for the hugs!

I was diagnosed in 2008 with sine, after about 10 years of joint pain, fatigue, carpal tunnel symptoms, and GI dysmotilitys and reflux. I had a fundoplication the same year, and have had bilateral release surgeries for carpal tunnel over the past couple of years. It had been progressing very slowly and chronically for years, it seemed.

Things went sour Nov 2009, when I came down with H1N1 flu, then pneumonia and was on antibiotics and prednisone for 4 months. My lungs never did feel right after that. Fatigue and joint pain flared terribly when the prednisone was tapered off, and hasn't left yet. Voice hoarseness increased. I developed lumps on my elbows/upper arms, knees, fingers over this past winter, and was diagnosed with another autoimmune disease, sarcoidosis, after biopsies, CT scan and PFTs showed lung involvement. Raynaud's has been much worse this year too - had multiple toe ulcers over the winter, however thankfully resolved pretty quickly with amlodipine.

Am hoping my new medicine, hydrochloroquine, will slow things down...

But enough about me, I remember from previous posts your lungs are much worse than mine. Are you seeing any improvements with your current meds?

:emoticons-group-hug: to you all!

Red

#15 Jeannie McClelland

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Posted 27 July 2011 - 09:32 AM

Hi Susie,

I'm another 'sine' - it will be 5 years in October since my diagnosis and I still have no skin thickening.

How goes the treadmill and the weight loss?

Warm hugs,
Jeannie McClelland
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