barefut

Wonder Drug

19 posts in this topic

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


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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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

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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)

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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

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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

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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

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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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.


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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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

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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

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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

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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.

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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...

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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.

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