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Going Off Prednisone


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#1 barefut

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Posted 18 August 2007 - 03:18 PM

Today was the first day in about 5 months without Prednisone. I want to see how I feel without it. Today was average. Still fatigued...

Gonna add B complex and Glucosamine.

We'll see...

Barefut

#2 Shelley Ensz

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Posted 18 August 2007 - 03:25 PM

Hi Barefut,

I hope you are trying this under your doctor's supervision. It is very dangerous to just go off prednisone, cold turkey.

Not to be alarmist, but, in fact, you may literally die from going cold turkey on prednisone. Even though it is strongly advised for people with scleroderma to never take prednisone, it is still never a good idea to stop it without your doctor's permission and supervision. It has to be very very gradually reduced.

Most people feel a lot worse off prednisone. Please consult your doctor about this if you haven't already.
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.

#3 barefut

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Posted 18 August 2007 - 03:35 PM

Thank you Shelley,

My rheumatologist told me that I could go off it anytime I wanted and she instructed me how to taper down. Since I was only on 5mg, I went to 2.5 and then off.

Thank you for your concern.
Barefut

#4 Shelley Ensz

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Posted 18 August 2007 - 03:40 PM

Hi Barefut,

Oh WHEW! You know we just hate it when we lose our forum members and friends due to stupid human pharmaceutical tricks. So I'm delighted you attempted this only with good medical advice.

Since you've been on a fairly low dose for awhile, you may not feel much difference. In any event, it is better to be off of prednisone with scleroderma as it has such an adverse, and even fatal, consequences with scleroderma.
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.

#5 Sweet

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Posted 18 August 2007 - 03:54 PM

Hey Barefut,

I will be very interested to see how you feel being off of it, please let us know!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 Clementine

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Posted 18 August 2007 - 04:33 PM

Shelley,
How come so many doctors prescribe Prednisone to those with Scleroderma? I didn't think it was used for people with Scleroderma anymore but it makes me wonder, because I was prescribed it by a rheumatologist for at least 6 months when I was first diagnosed, two years ago.

Yikes.

Good luck Barefut! I hope you are feeling fine. If nothing else, it's nice to lower your daily pill count!

Jennifer

#7 kiwimum03

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Posted 19 August 2007 - 12:41 AM

I am always looking at posts about Prednisone, as I find myself yet again back on it, even though I swore I would never go back on !!!!!

This is my third time in the last year, but this time I am only on 7.5mgs and have been back on it for almost 3 weeks(at my rheumatologist's insistance)..........although I have to say sitting on this dose I have had worse carpal tunnel and horrendous arm and legs aches, and I wonder if because 7.5mgs is similar to the dose our bodies naturally make??

Also, why is it so bad for people with Scleroderma to be on Prednisone?.....sorry I really should just go and look that one up myself!

Barefut, about 3 months ago I came off 10mgs very slowly over 4 weeks and had no problems only a wee bit of low bloodpressure and some hyperpigmentation and my itchy arms got worse.............not like the first time coming off 20mgs with no tapering.........don't ever do that, ikes, I thought I was going to die!!!!!

it sounds like you are going well..........I still keep a note in my purse saying that "I HAVE/Are on prednisone" along with all my other meds, so that even when I am not on it, a medic will know that I have been incase (and it would be rare) I have an adrenal crisis from coming off prednisone, but I think this is more of a worry if you were still on it and were in an accident, they would need to know.

Okay I am rambling enough about nothing.........not sure why I pitched in here actually.............hehe!

take care,
Irene

#8 Shelley Ensz

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Posted 19 August 2007 - 02:16 AM

Hi Irene,

Here's the link to the prednisone warning section of our main site:

It seems like many rheumatologists are particularly accustomed to prescribing prednisone and it seems that few of them are aware of the dangers of its use with scleroderma. So you may need to be proactive in letting your doctor know about it and in finding some suitable alternatives.

Here is an excerpt --

"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."

Likewise, it increases the risk of cardiovascular events.

Prednisone associated with increased risk of Pneumonia. Pneumonia is among the major causes of mortality and morbidity in rheumatoid arthritis. According to a study conducted by the National data bank for Rheumatic diseases prednisone is associated with a 70 percent increased risk of developing pneumonia. arthritis.about.com. 03-16-06.

Corticosteroids strongly increase  the short-term risk of developing scleroderma renal crisis! Despite extensive ACEI (angiotensin-convertase inhibitors) use, scleroderma renal crisis (SRC) remains associated with severe morbidity and mortality, and that corticosteroids (CS) might strongly increase the short-term risk of developing scleroderma renal crisis. These findings further support the crucial preventive role of avoiding corticosteroids in patients at risk for scleroderma renal crisis, as well as the persistent need for effective adjunctive or alternative agents to manage SRC. L. Teixeira. FRI0145 EULAR 2005.


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.

#9 barefut

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Posted 19 August 2007 - 03:02 AM

Woke up to rain and stiffness. Probably the beginning of summer would've been the better time to go off pred. I wish there was something else.




Shelley,

I am copying those and taking them with me to my appointment in September.

Thanks,
Barefut

#10 emmie

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Posted 19 August 2007 - 05:49 PM

Hi,

I"m wondering if these precautions against corticosteroids apply to injections into joints or just to oral steroid use over periods of time? Thanks,

emmie

#11 Sweet

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Posted 20 August 2007 - 04:44 AM

Hi Emmie,

There are precautions with steroid injections as well. If necessary - then receiving the minimal amount of injections is best. It's usually a last resort type of thing.

I have a bad knee, and a friend of mine who is an ortho surgeon stated to keep treating it with NSAID's etc, then when that doesn't help, we'll start injecting it (which will actually start tearing down the joint, but help the pain) and then when we've "trashed" your knees he said, we'll just go for a knee replacement. :blink: He makes it sound so nonchalaunt.

Hope this helps,
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#12 janey

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Posted 20 August 2007 - 04:54 AM

Barefut.
Just a little information on my experience in coming off 5 mg/day - I was on it for 3 years and the tapering process that my rheumatologist had me on took 4 months to come off 5 mg. As a result, I suffered absolutely no side effects and didn't notice any change at all. How long was it to go from 5 to 0 mg for you?

Big Hugs,
Janey Willis
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(Retired) ISN Assistant Webmaster
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International Scleroderma Network (ISN)

#13 barefut

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Posted 20 August 2007 - 01:31 PM

4 months! Holy Cow. My rheumy said to go down to 2.5 for a week or two then 2.5 every other day for a week or two then stop. I did it in two weeks. Had a headache today but that could be from anything else.

What are some of the side effects of coming off? I'm assuming fatigue and muscle stiffness and pain - same as symptoms that put me ON it....?

Barefut



#14 janey

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Posted 20 August 2007 - 05:27 PM

WOW - I was told to alternate 5 and 2.5 for 6 weeks, then go to 2.5 for 6 weeks, then 2.5 every other day for a month, then stop. The problem is that our adrenal glands naturally produce about 5 mg of cortisone a day. When we take prednisone, the body stops producing it; therefore, the tapering is to allow the body time to start producing cortisone again. If you come off too fast, your body is fighting to catch up and you can suffer from "adrenal insufficiency". Here's a great little Q&A about tapering prednisone from medicineNet.com.

Sounds like you may have come off it too fast. Of course a lot does depend on how long you took it to begin with. I was on it for 3 years.

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)

#15 whirlway

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Posted 22 August 2007 - 11:13 PM

Barefut, I took 20mg or more of prednisone for about 20 years. When I finally found the rheumatologist of my dreams, he started my taper and it took over 8 months. I never could get completely off, I will probably have to take 5mg a day for the rest of my life, due to the fact that my body just can't or won't produce it on its own. Every time I went below 5 a day I started getting the body aches, muscle stiffness, etc. So he decided to just keep me on 5. I tried very hard to get off all the way, but am content w/ the 5 a day now. I also take 2000mg of cellcept. Thank goodness for insurance, or I wouldn't be taking that. You know how expensive it is per month. Pretty rediculous if you ask me.
One of the great side-effects of getting off the pred was losing 80lbs in 6 months. I went from over 200lbs to a somewhat normal appearance. Had clothes in my closet from size 24 down to size 10.
Keep us posted on how you are doing without prednisone. More power to you if you can stay off. You certainly don't want to get the dreaded osteoporosis from too much prednisone like I did. Those compression fractures are very painful let me tell you. The last one I got I was in the hospital for 4 days on a pain medication drip. Not pleasant at all.
~whirlway


#16 kiwimum03

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Posted 23 August 2007 - 11:04 AM

Thanks for all that info Shelley,

this is certainly an interesting thread! This time I am on 7.5mgs and will be for another 6 weeks, then the joy of tapering again...........slowly does it!



Hugs,
Irene

#17 Sharonvandee

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Posted 23 August 2007 - 09:44 PM

Thanks for all the information

I am currently tapering off and have had terrible pain and didn't realise that the pain could be caused by tapering off

I will now be able to discuss it with the DR
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!

#18 WestCoast1

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Posted 24 August 2007 - 09:52 AM

I was wondering how you were doing? Has the fatigue gone away?
*WestCoast*

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