• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
Karenlee

Prednisone update

38 posts in this topic

I need to jump in here to point out, once again, that Prednisone can be very dangerous, even deadly, for scleroderma patients. Even in moderate doses for just a few weeks.

Please read more about it and share it with your medical team, for there is a dire lack of awareness of this huge threat to scleroderma patients --

Steroid Warnings for Scleroderma.

Corticosteroids (such as prednisone) strongly increase the short-term risk of developing scleroderma renal crisis (kidney failure). It also causes a 70 percent increased risk of developing pneumonia. It is crucial to avoid corticosteroids in patients with systemic scleroderma.

Steroids will certainly make many of the symptoms feel better -- at least, temporarily -- and doctors will certainly try to prescribe them often for scleroderma symptoms. But this is a very serious issue.

There really are times when it is better to have no treatment at all, than a treatment that could worsen the illness, lead to life-threatening complications and even death by sudden kidney failure or pneumonia.

It is up to each of us to make these decisions along with our medical team, but MANY of our doctors are completely unaware of the excess threat to our health posed by prednisone use in scleroderma patients, so it is usually up to us to inform them of it or to respectfully decline the idea and ask for other alternatives.


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.

Share this post


Link to post
Share on other sites

Thanks for the information Shelley. Not sure what to do now. I called my Dr's office but they are closed.

Share this post


Link to post
Share on other sites

Hi Craig,

 

My sister had the same thing happen. She's getting her hip replaced at the end of the month. I was afraid to say anything because it doesn't always happen and I didn't want to scare anyone...

Karen

Share this post


Link to post
Share on other sites

KarenLee,

 

Are you feeling better today? I've been worried about you!

 

Bunky

Share this post


Link to post
Share on other sites

Hi Bunky!! Thanks for asking.

 

Well I spoke to my doctor and am being tapered off the Prednisone this week. They just weren't agreeing with me. I'll be completely off by Sunday. I only took one yesterday and I can feel the stiffness returning already :( Its amazing how fast this stuff works. I remember within the first day or two feeling so much releif from the stiffness, and now after 2 days of only taking one I feel stiff again.

 

On the upside, I do have my eye appointment on Monday, so if the eye doctor gives the go ahead I can start the Plaquenil. Until then you'll all just have to put up with me whining :P I swear I can hear the Sanford and Son theme music in my head when I get out of bed in the morning Lol

Share this post


Link to post
Share on other sites

Updating again:

 

I am on 4 mg every other day until Sat, then I'll be off the prednisone. I feel the effects already and pretty harshly. Not sure if it's because I had that temporary releif for those 5 days or so but sheesh! When I woke up this morning I was stiff as a board. And my back was killing me last night when I was in bed.

 

Anyway, that's my whining for the day Lol Just needed to vent.

 

Karen

Share this post


Link to post
Share on other sites

Karen,

 

I'm sorry you're feeling stiff and achy again. It's like you had a little vacation, until the hives kicked in! ;) I do hope the plaquenil will work as well for you as the prednisone did. Good luck at the eye doctor!

 

Bunky

Share this post


Link to post
Share on other sites

Thanks Bunky, I sure hope it works as well just without the nasty side effects.

Share this post


Link to post
Share on other sites

I don't believe that Plaquenil has the same anti-inflammatory effect on the body as Prednisone. I have been on both for well over a year. I am now on high levels of Imuran (200mg) to allow me to reduce the Prednisone. My Plaquenil dosage has stayed the same.

Cheryle

Share this post


Link to post
Share on other sites

To add yet another negative regarding Prednisone: It can make you feel very good and energetic when you are actually in bad shape.

 

When I took it 8 years ago for a strange all-over body inflammation (scleroderma related), I felt so good that I became very active (which included felling 90 foot eucalyptus trees!). Needless to say, I got even sicker.

 

Craig

Share this post


Link to post
Share on other sites

ced - I just read your post - I had been on prednisone for over a year and juat weaned off it in the last 2 months. I too didn't realise how well it worked until I came off it, now im so sore and slow and feel like such an old woman, at 37 years old Im tempted to go back on it again just to feel semi normal. Its quite upsetting that the only thing that works so well also has some very dangerous side issues, honestly, what do ya do?

Share this post


Link to post
Share on other sites

Hi Susanah,

 

I too can relate to how you are feeling, I am 39 years old and find myself these days shuffling along and in constant pain. For the last few days I have been having pain in the lungs which worsen in the evening. I am having bowel problems which sends me to the toilet up to 20 times a day and a nagging constant cough.

 

I have Prednisolone in my cupboard which I am tempted to use at times, but I will try and battle through this flare. Please know that you are not alone in this and try and look on the bright side of things, - hard, I know, but if you have kids there is not much that you can do but to try and stay positive, for them.

 

Craig, I can also relate to the feeling of wellness whilst on Prednisolone.

After a few days of taking it I felt like I was a teenager again, full of energy, being able to get down on the floor and jump up straight away! I practically cleaned my house like never before, and cooked and cooked, Yes, all of the wrong things, my appetite was terrible, always thinking about food.

 

Take care everyone

Celia

Share this post


Link to post
Share on other sites

Ced,

 

Same here with the almost instantaneous flexibility and energy. I suddenly could bend and move in ways that I couldn't for a long time. On the other hand I just don't feel personally that the side effects were worth it.

And my appetite decreased since I've been off so another plus.

 

Karen

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now