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Newly Diagnosed Scleroderma


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#1 Honey

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Posted 08 January 2009 - 10:58 AM

Doctor prescribed 5mg prednisone. I am hesitant to take it. Has anyone else been prescribed prednisone?

#2 Peggy

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Posted 08 January 2009 - 11:03 AM

Welcome. You have come to the right place to get answers to questions and to get caring people who will be there for you. When I was first diagnosed with sclero that was the first thing they tried. I wasn't able to stay on it though as it made me go nuts. It made me so wound up I wasn't able to even sleep. From what I've heard from alot of people on this board who have taken it it's not the best drug to have to put up with in what it does to you. I hope others will chime in and give you their info on how it is for them.

Again, Welcome and warm hugs,

Peggy

#3 Shelley Ensz

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Posted 08 January 2009 - 11:08 AM

Hello Honey,

Welcome to Sclero Forums! I'm sorry you have just been diagnosed with scleroderma. But at least you know what you are dealing with now. As it happens, they strongly recommend avoiding prednisone in scleroderma patients. This is something you would want to discuss with your doctor. It sounds like you might be seeing a regular rheumatologist at this point, and perhaps not a listed scleroderma expert?

See: Scleroderma Experts and Prednisone Warnings.

But, do not ever make any medication changes based only on our input in the forums, since none of us are medical experts. Rather, please provide your medical team with the information and discuss it with them. It is usual/common/normal for doctors to prescribe prednisone for inflammatory conditions and they thus don't even think to check to see if there are contraindications for scleroderma.

Prednisone *strongly* increases the risk of renal crisis (meaning, sudden kidney failure) in scleroderma patients...among other things.

So, other than receiving this startling input from your first post <sigh>, how are you doing?
Warm Hugs,

Shelley Ensz
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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.

#4 Honey

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Posted 08 January 2009 - 11:13 AM

Yes, my rheumatologist is listed as a sclero expert on the list you provided. I suppose I will call her and let her know my feelings. Perhaps she can explain why she wants me to take it. Thanks for your reply.

#5 Amanda Thorpe

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Posted 08 January 2009 - 01:11 PM

Hello Honey

Welcome to the forum and sorry you have scleroderma. :angry: I have diffuse SSc.

I took 7.5mg of prednisilone/prednisone for a few months, prescribed by a sclero rheumatologist, for itching and erythromelalgia. I stopped taking it, tapered off, because of the weight gain, although small it was continuous. Once off it I realised that it had effected my mood, made me irritable, short tempered etc whilst I was on it.

It did work though, the itching was minimal as were the erythromelalgia symptoms, however, the overall side effects negated any benefit in the long run. In addition to which, despite being on a low dose, I had to taper off over two weeks during which I had headaches and felt depressed!

It's a powerful drug, even at a low dose.

Speak to your rheumatologist and decide, come back for more info/advice whenever you need.

Take care.

Amanda
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#6 MaryFanPhilly

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Posted 08 January 2009 - 01:29 PM

Hello Honey,

I have diffuse sclero and have unfortunately been on prednisone for 3 1/2 years and cannot go off it. As Shelley said, be very, very careful. Be sure to discuss short term vs. long term use with her. Some of us go on and off it, sometimes they put you on it for a short while then come up with another steroid-sparing alternative. In my case nothing else worked, prednisone is the only med which allows me to have anything like a normal life, but at a price!!!! It is, as Amanda said, an incredibly powerful drug. Lots of luck, and keep us posted.

Love,
Mary in Philly
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#7 Jeannie McClelland

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Posted 08 January 2009 - 02:15 PM

Hi Honey,

Welcome to the forum! I'm sorry, too, that you've been diagnosed with scleroderma.

I was on 5mg of prednisone daily for several years, but was having bone problems, eye problems, and I have no idea whatsoever what I was like to live with~ :lol:

My doctor weaned me off it 1mg every 3-4 weeks and that was so awful that I nearly considered going back on it despite all the risks. I'm glad I persevered, though, and would be strongly disinclined to go back on.

As Shelley said, we can only relate our personal experiences and point you in the direction of published information from reliable sources. If you've been newly diagnosed, now is the time to start forming a good working partnership with your rheumatologist. I used to take in print-outs of scholarly articles about things I had some concerns about until my rheumatologist accepted that I really had done my homework.

Again, welcome. And, of course, big warm hugs!

Jeannie McClelland
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#8 Nina

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Posted 08 January 2009 - 02:28 PM

WELCOME Honey!!! So sorry that we meet this way, BUT I am so happy that you have found our wonderful foum.
Try to read as much as possible ~ also join in the conversations ~ great people here to help and support!
Much Love,
Nina (DE)

#9 Snowbird

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Posted 08 January 2009 - 04:14 PM

Just wanted to say hello too...and yes, you have definitely come to the right place for support and information....this is a great place to ask all your questions. There is always someone who can help. Let us know how you make out with your call.
Sending good wishes your way!

#10 canon

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Posted 08 January 2009 - 05:35 PM

Welcome Honey,

Have been on prednisone many times up until recently. It does have many side effects but does a wonderful job on inflammation and pain. As Shelley said it is not recommended for people with scleroderma because of renal problems. Your doctor should have an answer for doubts you may have on why it is something she wants you to take. Hope everything works out for you.

With gentle thoughts,

Judy
A happy heart is good medicine.

#11 Honey

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Posted 09 January 2009 - 07:28 AM

Thanks so much for your sharing your experience. I will talk to my rheumatologist before taking it. Perhaps there is something else that she can prescribe for me.

Kindest regards,
Honey

#12 Honey

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Posted 09 January 2009 - 07:30 AM

I will be hoping for your health to improve. Please send good thoughts my way daily. I believe that is our strongest weapon to combat this enemy.

Standing firm,
Honey

#13 Jeannie McClelland

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Posted 09 January 2009 - 06:11 PM

Honey,

I'll keep you in my thoughts every day.
Jeannie McClelland
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