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#1 barefut

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Posted 04 February 2007 - 05:33 AM

Well, aparently I had forgotten what it felt like to be pain free because when I realized one day that nothing hurt, I wanted to cry and then dance and then clean my whole house and then relandscape my whole property and all of those things I've not been able to do for so long.

I started Prednisone 5 days ago. I was sitting on the hard gym floor at my son's basketball game and I realized. Nothing hurts. No tension headache, no hip or shoulder pain. I was..........COMFORTABLE! And at peace. I have even noticed that my mood is softer. I'll bet my kids are grateful.

Pains are still there but much reduced and even absent for portions of my day. I am so grateful and wondering, "Why did I wait SO LONG?!" I should have asked for Pred. 7 years ago.

Of course I read up all about Prednisone and found out one of the serious side effects is "inappropriate happiness". I don't think I've ever seen those two words side by side before.

The way my life has been going, if anyone ever notices me being "inappropriately" happy they'd better just leave me alone! :lol:

Have a pain free day!
Barefut

#2 Heidi

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Posted 04 February 2007 - 07:06 AM

Hi!

I am so glad that the prednisone is working for you and you are now relatively pain free! That is GREAT news!

Warm wishes,
Heidi

#3 Sweet

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Posted 04 February 2007 - 07:24 AM

Oh Barefut, I am so HAPPY FOR YOU!!!! Wow, isn't it amazing how we get used to being in pain and forget what healthy life is like.

I had a moment such as you are describing about 2 years ago. My husband and I were still in bed one morning, I had just woken up. I lay there and realized NOTHING was hurting. I hadn't experienced that in YEARS. I whispered to my husband without moving "Wow something really strange is going on" He jumped out of bed ran to my side of the bed and said "What wrong" I smiled and broke out crying and said, "I don't feel any pain right now and it's been so long that it just seems strange" I laid there for 20 minutes in absolute bliss enjoying every second of it, afraid to move for fear it would change. It lasted only about 20minutes, but it was a wonderful feeling......

I really am happy for you! Enjoy every single minute.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 nan

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Posted 04 February 2007 - 08:21 AM

That's awesome!!!! I can't take prednisone because of watermelon stomach. About 8 years ago I went to get acupuncture. The first time I got it I got off the table and I was in no pain. It was such an incredible feeling that I started crying. The doctor was scared he had hurt me. Enjoy yourself, you deserve it!!!!!!!!!!
Nan

#5 kiwimum03

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Posted 04 February 2007 - 03:08 PM

Hi Barefut,

I remember my first day on Prednisone, I couldn't believe how quick it worked!
I felt amazing, no fatigue, no pain or swelling, I felt like "me" again for the first time in ages.
I was only on Prednisone for 2 weeks, so I didn't get to enjoy that bliss for long.

Take care and enjoy your inappropriate happiness!!!!

Hugs,
Irene

#6 Sheryl

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Posted 04 February 2007 - 04:48 PM

Why do some people use prednisone for such short peroids? If it is helping so much why quit taking it? Some people take it for years. Can it really help for such short term use and if so how long before the pain comes back and you need to go on it once again. Sheryl
Strength and Warmth,
Sheryl

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#7 barefut

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Posted 04 February 2007 - 06:51 PM

Thanks Heidi. :)

Sweet,
I cried too reading your post. :(

Nan,
I've always wanted to try acupuncture. I'm going to look into it. Did your insurance cover it?

Irene,
What did you take Pred for?

Sheryl,
I was prescribed 20 mg pred for 2 weeks for back pain I incurred while teaching my son to ride his bike. ( Running forward in a bent-over position while holding up a 35 pound kid on a 35 pound bike is not advised. :( )

It helped immediately for my pain which was due mostly to inflammation.

#8 kiwimum03

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Posted 04 February 2007 - 11:39 PM

Hi Barefut,

bascially me taking Prednisone for 2 weeks was my rheumatologist's quick, crude experiment to see if my pain was caused by inflammation, since all my bloodwork looks good on paper and he wasn't sure what direction to go, as I don't have a diagnosis.

I took 40mgs for 1 week, dropped to 20gms (and crashed and went loopy that day) for another week.
But that first week was wonderful.
Since my pain disappeared it gave him the answer he needed and he started me on Plaquenil which I have now had to stop because of a suspected allergic reaction (itchy rash).

I am wondering if he will put me on maybe 5mgs, just to help me with my fatigue and ease my pain a little.

I'll have to wait to see where I go from here!!
Hugs,
Irene

#9 nan

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Posted 05 February 2007 - 04:03 AM

My health insurance didn't cover it.
Nan

#10 WestCoast1

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Posted 05 February 2007 - 04:58 AM

Barefoot~
I am so happy for you! Your post made me smile.... :D
*WestCoast*

********

#11 Vee

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Posted 05 February 2007 - 05:09 AM

Barefut,

I started 5mg of prednisone about a month ago! And WOW!! I just told the hubby the other day, that I almost feel like my old self again! He thougt I was on somekind of caffeine pill or something! Cleaning the house, up and down the stairs doing laundry, going shopping, and I've even been cooking dinner!!!, which is the biggest miracle of all for me!! I just hope it lasts. I was recently diagnosed with RA, and doctor gave me the prednisone for the joint pain and immflamation. I haven't had any follow up blood work yet, so I hope my kidneys and liver are tolerating it well. I'm even hoping to break back into going to the gym soon! Ohhh how wonderful that would be!
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#12 MaryFanPhilly

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Posted 07 February 2007 - 05:09 AM

Ok guys, BEEEEEEE CAREFUL with the prednisone. I am one of those people- granted, we are few- who have every known side effect but can't get off it because it's the only thing that helps.
I now have steroid-induced diabetes, high cholesterol. borderline glaucoma, moon face, buffalo hump etc, etc, etc.
Keep to the lowest dose you possibly can and if your rheumatologist can get you onto another drug, like Plaquenil, by all means ditch the prednisone. I love the drug, it is the only thing that helps me, I feel like a new person since I started it (a year and a half ago) BUT, these side effects are pretty bad. I'm on insulin shots plus two orals to control the blood sugar.
Not to scare anyone, please don't misunderstand me- but take care and pay very, very close attention to all these things, and avoid my situation if you can. Just my own two cents worth.
Love, Mary in Philly
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#13 Shelley Ensz

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Posted 07 February 2007 - 06:33 AM

Hi MaryFanPhilly,

Thank you for pointing out the issues that you are encountering with prednisone.

I'm very glad for everyone who has found relief with prednisone, and I really don't want to rain on anyone's parade, as I know how precious even a few moments of relief can be!

Unfortunately, prednisone is strongly associated with kidney failure in people with scleroderma, and with pneumonia (increasing the risk by 70%). Even low-dose steroids can cause irreversible loss of brain tissue in people with autoimmune disease. Thus it is strongly recommended to try to avoid corticosteroids (such as prednisone) in people with systemic scleroderma. See Medications: Steroids.

When avoiding it simply can't be done, work with your medical providers to try everything possible to keep it to the lowest dose. As Mary so aptly points out, you don't need to be on it very long for severe and irreversible problems to begin -- and scleroderma puts us at greatly increased risk of severe (and even deadly) side effects from prednisone and other corticosteroids.


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.

#14 peanut

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Posted 07 February 2007 - 11:43 AM

Shelley,

Recently, my pft dropped by 10%. My lung doctor thinks its because they tried to wean me off of prednisone. My volumes are already low, so they immediately upped my prednisone pills from 5 mg to 10 mg and put me on an 80 mg prednisone inhaler 2x a day. Your last post makes me concerned. Kidney failure, brain loss, pneumonia, very concerned.Thanks for the info. I'll ask about alternatives.

peanut



You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#15 Shelley Ensz

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Posted 07 February 2007 - 12:05 PM

Hi Peanut,

Sometimes prednisone might be unavoidable, but many doctors prescribe it readily, and they may not be aware of the especially adverse impact it can have on scleroderma patients.

At the very least, I'd make sure the matter was thoroughly discussed and that your doctor is aware of the risks involved. Usually there are alternatives to steroids. (But of course, I'm not a doctor, I have no medical training at all.)

See our Scleroderma Lung Treatments page for some ideas. And do the best you can, under trying circumstances.


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.

#16 barefut

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Posted 07 February 2007 - 04:10 PM

I'd better get out my umbrella.....it's raining on my parade! :lol: The honeymoon is over anyway. I've been achin' the past two days.

You guys are starting to freak me out a little. I asked my doctor about Celebrex but she didn't want to go that route withme. I also asked about Plaquenil about 6 months ago but she never addressed it.

I did trust my doctor, as she specializes in lupus and scleroderma patients. And she's only starting me on 5mg's. Now you're starting to make me doubt her.

I wonder if since I'm on Cellcept, they don't want to/can't mix that with certain other drugs and I know they don't want me to come off of Cellcept.

All my labs came back normal. Yay! I go back every 3 months. In the meantime I will pay close attention to me self.

Thanks for your warnings and information Shelley and Mary :)

Love, Barefut

#17 bookworm

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Posted 07 February 2007 - 07:28 PM

This is all pretty confusing. I have been on Prednisone for about three years, mostly pretty low doses -- 5 mg. a lot of the time.

I read ther article about steroids and brain atrophy in multiple sclerosis and apparently other autoimmune diseases and was alarmed!

I had an appointment Tuesday with my rheumatologist and I took a list of questions with me! I asked her about the brain tissue loss right away and she looked surprised and said something to the effect that Prednisone wasn't going to cause that. I got the feeling that she hadn't ever heard of such a thing. I had printed off the article, but unfortunately had left it in the car and wasn't about to go get it! I mentioned the article and she was interested and I told her I'd mail it. I intend to do that tomorrow.

So, after talking with her, I felt better until I got to the car, where I had left the article. I read it again. Yes, it did say "chronic low-dose treatment with corticosteroids may contribute" to loss of brain tissue. Unless I am reading it wrong, it appears to me that high doses don't do this. Is that possible?

Anyway, I do intend to get this article right into the mail and I'll call my doctor and see what she has to say, but she was very reassuring yesterday. I asked about Cellcept as an alternative and she said she hasn't had very good success with it -- in other words, her patients haven't done too well on it. I believe she also said Dr. Mayes has not put many of her patients on it, but does use more methotrexate.

I hate being on Prednisone because of the lowered immune system and consequent vulnerability to colds and flu and everything else! I haven't suffered from any of the other common side effects such as weight gain and puffiness. All I have had is relief from the painful swelling. But I'd really like to keep my brain, too!

Mary in Texas



#18 MaryFanPhilly

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Posted 08 February 2007 - 02:30 AM

Hey again, it's me. I hope I didn't disturb a hornet's nest with my last post. Shelley probably feels the same way! But remember, these side effects aren't the same for everyone, on another forum I post, they use the term 'YMMV' which means 'Your Mileage May Vary.' Some people stay on prednisone for years and years with no adverse effects. However, we ALL still must be aware of what MAY happen. My rheumatologist told me he was once sued by a patient who developed steroid induced diabetes and said they were never told of the side effects, so he is always careful to discuss with me the ever dreaded 'risk vs. benefit' factor of any drug I take. He has also told me that I am never, ever to take more than 20 mg of the prednisone.

It's only natural , we take the pill and feel better- what could be better? Mary in Texas, high doses are usually short-term, say for a flare of ulcerative colitis or some similar condition, but not for us... low doses are what helps contain the inflammation and the aches and pains, which is why Plaquenil is used as a 'steroid sparing' drug, or one that takes the place of the steroid in that regard. That said, the Plaquenil doesn't work as an immunosuppressant as prednisone does. So taking a high dose for a week or two won't cause longterm effects.

Some of us are caught between the rock and the hard place with prednisone as Shelley says, living on that knife-edge with our immune system and symptoms and the meds we are stuck with.

The good news is that, according to the newest information (my rheumatologist went to a huge sclero conference in Europe recently) the disease, if controlled for the first few years from onset, will eventually burn itself out and we can have a NORMAL life expectancy. Everything returns to normal, the skin softens up too. Early intervention is the thing.... the more we get the word out, the sooner us folks are diagnosed and treated, and thankfully that seems to be happening more and more. Two years ago my family doctor told me I had a 'rash and some swelling' - she learned a lesson about scleroderma onset that she won't forget, but sadly at my expense.

And, my endocrinologist who is treating the diabetes told me I'm the only sclero patient she has!

Hope you all are warm, it's a whopping 11 degrees here. woo hoo. Have a great day everyone.

 

Love,

 

Mary in Philly


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#19 barefut

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Posted 08 February 2007 - 06:50 AM

Sounds like someone on Cellcept shouldn't lower their immune defenses any more by taking Pred. ?

I think I'll be talking to my doctor.