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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Jeannie McClelland

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Posted 22 March 2011 - 12:28 PM

Sigh, I'm being weaned off prednisone again. I've got to tell you, all sorts of things hurt more than I remember them doing. After having a serious moan to my rheumatologist, he sent me for an evaluation. It seems like the multiple compression fractures in my back have caused both kyphosis and scoliosis. The curvature has apparently knocked the first rib on the left out of alignment and it's compressing the artery and making the circulation on the left side worse. (I did notice my left hand is always colder than the right.) There's some nerve impingement too. Let's see, what else. Oh yeah, tendinitis and most of the shoulder muscles "have flared up" (left side) and bursitis in both hips, worse again on the left side. Nearly forgot, tendinitis in both hands. To top it off, I've got frizzy hair. Just thought I'd throw that in there. :lol: Lots of PT coming up, but they don't think they can do much for my hair.

Could you guys slow up the line dancing? :emoticons-line-dance: I can't keep up.
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#2 Joelf

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Posted 22 March 2011 - 01:28 PM

Oh, Jeannie, I'm so sorry that you're suffering so much pain and discomfort.

My mother has kyphosis caused by osteoporosis and it does impinge on her breathing. I expect being weaned off the prednisolone isn't helping with your aches and pains; I know we none of us like steroids but they do help with alleviating a lot of the pain and discomfort.

Still I can empathise with the frizzy hair; if I'm not very careful any sort of damp weather makes my curly hair go into ringlets, so I resemble a sort of middle-aged Shirley Temple!! :o :lol:

I do hope the PT can help you feel a little better.

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#3 Sweet

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Posted 22 March 2011 - 01:29 PM

:( Sorry honey. Predisone is such a love hate relationship isn't it? :emoticons-group-hug:
Warm and gentle hugs,

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#4 Amanda Thorpe

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Posted 22 March 2011 - 02:30 PM

Hello Jeannie

I have to ask if your case of frizzy hair is likely to be...contagious? I am afraid that it can be very difficult to recover from and overcome in the long run. People also tend to have very little sympathy for it as they don't understand it, are afraid they might catch it and rarely suffer from it themselves. :lol:

Seriously I am sorry you're having multiple issues all at the same time, what's that expression misery loves company? :angry:

I hope the physical therapy brings you some relief and I think that :you-rock: !!

Take care.
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#5 Jeannie McClelland

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Posted 22 March 2011 - 03:57 PM

Hi Amanda,

No, they said the frizzy hair wasn't contagious. They called it Sudden Onset Acute Frizz and said it's part genetics and part environmental trigger (single digit humidity lately). I guess it isn't a scleroderma symptom either. :P
Jeannie McClelland
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#6 Sandy B

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Posted 22 March 2011 - 04:11 PM

Hi Jeannie,

Oh my goodness poor you, not frizzy hair, don't you just hate bad hair days!!! The rest I am sure you can deal with in your usual stoical and funny manner, but the hair.......

You have my greatest sympathy lol.

Take care

Sandy B

#7 debonair susie

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Posted 22 March 2011 - 04:19 PM

Oh my,Our Dear Jeannie...

If only...
you could take Prednisone and be able to STAY on it FOREVER!

:sorry: you're feeling bits & pieces of yourself you haven't
had pain with for awhile. Yet, I hope the pain eases up a little,
once the warmer temperatures come about.

I have mild scoliosis and my RIGHT hand is always colder than my left :P

As for your "SOAF", I'll feel bad for YOU...if you'll feel bad for me, as
I have SAABH (straight as a board hair) ;)

Really though, my friend...sounds like a day at the Spa would help you out a bit,
would it not?!
Sending Soft Hugs your way....
Special Hugs,

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#8 uknlv18

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Posted 22 March 2011 - 06:25 PM

Sorry to hear you about your aches and pains and especially your hair, nothing worse than a bad hair day that goes on and on!

:happy-dance: heres a bit slower dance so you can keep up!

:spoon: and here is one of my spoons, Im afraid I can only spare one at the moment cause I seem to keep running out of them! Hope things get better soon, and if not a spa day then maybe a nice long hot soak in the tub!

Jean

#9 Jeannie McClelland

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Posted 22 March 2011 - 06:31 PM

I like the wee birdies! Not only are they built like me (um, plump~) and are moving kind of slow, they have feathers! Feathers don't frizz!! :woohoo:
Jeannie McClelland
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#10 Shelley Ensz

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Posted 23 March 2011 - 06:34 PM

Jeannie, can they do anything for any of the fractures or tendonitis? Like, could you pick the most painful or bothersome area, and somehow get it surgically enhanced or useful P.T. for it?

I'm sorry, I know the frizz is totally hopeless, but I'm hoping there might be some help for the rest of it.

I'm going to call for a group hug here, however, everyone please remember to even take the hugs easy for Jeannie, okay?

:emoticons-group-hug:
Warm Hugs,

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#11 Amanda Thorpe

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Posted 23 March 2011 - 06:43 PM

Here is a :emoticon-hug: , nice and gentle for our lovely Jeannie :emoticons-i-care:
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#12 enjoytheride

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Posted 23 March 2011 - 09:10 PM

The only semi-good thing about your pain is that hopefully your body will adjust some over the next few weeks and it will hurt less. At least that is what happen to me when I reduce or go off meds. My body yells at me at first then settles into nagging. Maybe it ups the natural steroids to cope or simply I get numb. But it usually gets a bit better although not as fine as that outside chemistry can make kit.
You've had a rough road lately. I hope it smooths out for you soon.

#13 Joelf

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Posted 24 March 2011 - 03:22 AM

Here's another (very soft and gentle) :emoticon-hug: for Jeannie!



And a couple of :spoon: :spoon: for good measure! ;) :emoticons-i-care:

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#14 miocean

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Posted 24 March 2011 - 09:43 AM

Dear Jeannie,

:temper-tantrum: I am so sorry you are having pain AND hair issues! :temper-tantrum:


I will be on prednisone the rest of my life as it is the protocol for my transplant. I have read of people who have had 4 hip replacements since their transplant. When I was at the scleroderma specialist she mentioned a hip TRANSPLANT! :emoticon-crying-kleenex: Never heard of it, has anybody else?

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#15 Jeannie McClelland

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Posted 24 March 2011 - 12:24 PM

Hi Miocean,

Good grief, a hip replacement? And somebody with four of them?!! I guess it could be due to the prednisone weakening the bone/supporting structures of the hip or perhaps it is a consequence of being on dialysis for so long? I have a friend who is now 12-years (I think) post-kidney transplant. Hers was due to poly-cystic kidney disease and she ended up with very brittle bones before the transplant as a result of the kidney disease. No hip replacement, though. I'll see if she knows anything about this and let you know.

Warm wishes,
Jeannie McClelland
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#16 Jeannie McClelland

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Posted 24 March 2011 - 12:36 PM

Thanks for the good wishes, everyone, and the nice group hug!

They're hoping to work on getting the shoulder tendinitis and the hips to settle down with some intensive PT, ultrasound, and (oh frabjuous joy!) massage over the next month. As for the fractures, we're kind of on a wait and see pattern. The worst ones may need to be stabilized. The kyphosis is worsening the vertebral shifting I have in the cervical spine (one is moving forward, others back). I've been on Reclast for 3 years now and it seems to have slowed down the rate at which they are occurring pretty well. The absolutely crazy thing is that I've never, ever had a bad bone density exam.

Oh dear, I've just realized I'm going to get even shorter. I'll end up as a short, fat, grumpy old woman with, wait for it, frizzy hair. :lol:
Jeannie McClelland
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#17 kacklebird

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Posted 24 March 2011 - 02:10 PM

Hi Jeannie,

First I want to say I love the line dancers!! They are too cute. I'm sorry to hear you're having so many issues with your bones. If you have compression fractures there are Interventional Radiologists who specialize in Kyphoplasty. It's a procedure that is done for compression fractures to alleviate the pain and give that vertebrae support again. My aunt had it done twice for 2 compression fractures. They basically insert a balloon to open up/elevate the area that's compressed and they inject a cement like material which will support the vertebrae. It may be something worth checking into as it definitely alleviated my aunt's pain. I don't know what state you're in, but you could call a radiology center to ask them if they have an Interventional Radiologist who does Kyphoplasty or knows one locally. Maybe too your doctor could make some calls to see who is the best one in your area. Good luck and I hope that you can get help to have some relief.

#18 KayTee

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Posted 24 March 2011 - 06:20 PM

Warm soft hugs your way. Your sense of humor helps everyone.
Thanks, and hope you will be feeling better before long.
Kay Tee

#19 Amanda Thorpe

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Posted 24 March 2011 - 06:31 PM

I'll end up as a short, fat, grumpy old woman with, wait for it, frizzy hair


Oh yeah Jeannie! Let's do it and be a double act...I'll be fat, hairy and sweaty to your fat, grumpy and frizzy! We could be the next big thing...think the old geezers in the balcony of the Muppet Show! We could grump and grizzle the days away... :woohoo:
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#20 Shelley Ensz

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Posted 25 March 2011 - 12:57 PM

Hi Jeannie,

Oh goody gumdrops, you get massage therapy, too! I've had extensive PT for tendonitis, and then of course recent surgery for it, too. I found the PT very helpful, eventually. But in the beginning the PT was a real hummer. I hope it all goes well for you.

I also know someone who had kyphoplasty (after a bad fall), and they rave about how easy, fast and effective it was. Miles ahead of how they used to treat compression fractures. They had it as day surgery and had complete pain relief within a day or two. I may be wrong (I often am) but I think the kypho-whatever needs to be done within a few months of the fracture occurring. So, maybe its too late for easy measures for you?

We'll do the Sclero Happy Dance again, now that you're on the road to recovery (from a few things at least):

:emoticons-line-dance:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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