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Kiwi

Prednisone

13 posts in this topic

Hi all,

 

I met my very first Scleroderma person two days ago and it gave me so much hope and inspiration I just had to share with you.

 

She is younger than me (23), has had Scl for 5 years and only in the last 6 months has she been feeling better. Her hands and arms have softened and she has more mobility in her fingers and body, and MUCH more energy than previously. she puts it all down to Prednisone.

 

My doctors have NEVER mentioned this drug to me and I get mixed opinions on it from family and friends. Some say wonder drug, others say dangerous drug.
What do you know about it? I know some of you are taking it and I'm interested to hear your stories.

 

What amazed me was that she has just finished her training to be a Personal Trainer... I commented that I can't even get down on the ground properly and stretch let alone train others in fitness. She said that she used to be like that too but perserverance with stretching and the Prednisone has seen her come out the other side.

 

There is always hope!!

 

Take care,

 

Megan


Kiwi

 

Diagnosed 2006 - Diffuse Scleroderma

Skin and lung involvement

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Kiwi,

 

Well, since YOU asked........

 

I kick myself everyday for not stepping up to the plate and demanding something for my pain, stiffness and fatigue like 8+ years ago! I am angry and sad because I feel like I WASTED all that time being miserable when prednisone was there all the time.

 

I will classify it as a "wonder drug" for me. It is not for everybody and it IS a scary drug and it DOES have awful side effects for some people and at higher doses. I've heard it described as a double edged sword. A lot of drugs are like that.

 

I have only been on it a short time but I will say that prednisone has given me a big part of my life back and that is invaluable. However, for some people, it has taken big parts of their life away and for that I am very sad.

 

I just feel very grateful to be lucky enough to not have had any problems with it - so far. And grateful to have a rheumatologist who is willing to try it with me and monitor it closely.

 

Tonight I was practicing Tae Kwon Do with my son. I can do some pretty awesome kicks for an old lady of 41 with scleroderma. I might just have to sign up for the class and start working towards a black belt. ;)

 

Good luck and best wishes finding the right pain relief for you.

 

Love, Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hi Megan

 

I have been on high doses of Prednisone since December (started at 50mg, then 40mg for 2 months now on 20mg, soon to be on 10mg then hopefully stay on 5mg). I got instant relief from pain (which was great). Some bad side effects because of high dosage (swollen moon face, watery eyes, tender skin inside mouth). Since dosage has been dropped these side effects are getting better. I was on a low dosage before this (10 and then 5mg) and had no side effects. I had so much pain before that I could hardly walk anywhere, now I can go shopping for a couple of hours as long as I can sit down now and then as I tire easily.

Hope I have been some help

 

Helen

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HI Megan! I take prednisone and I HATE it! I have put on so much weight .Has it helped me... in the past yes but this tme around I am getting worse so I want off of it. Right now I have some fungis in my mouth from the prednisone so I am now on yet another med! If I have anything to say about things I will never go on prednisone again once I get off of it this time around. I am on a taper and am now down to 10 mg a day from 20 mg to start with. ( when I say I put on weight I mean I put on weight.. over 40 pounds from my first doctors visit last summer)

 

Hugs,

Patty


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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Megan,

I am one of those people that hates prednisone. I had a major GI bleed because of it. Also, my doctor from Johns Hoplkins told me to be careful if a doctor wanted to put me on it because it can cause renal problems in scleroderma patients. I wouldn't want to take it anyway because of GI bleed. Going off of it is horrible too, a great deal of depression.

Nan

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<<Tonight I was practicing Tae Kwon Do with my son. I can do some pretty awesome kicks for an old lady of 41 with scleroderma. I might just have to sign up for the class and start working towards a black belt.

Love, Barefut >>

 

Barefyt ,

 

Thanks for putting a smile on my face this morning!!!

Take care, Everyone.

 

Margaret

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Hi Megan! It's different for everyone, I know. I haven't seen anything from those of us who've been on it long term, so here goes...I've been stuck on prednisone for 22 years.

 

It saved my life back in '85, and did a pretty good job for several years. Unfortunately, every time they tried to ween me off of it, my body went kukoo! I have never been off of the drug, because my body formed a dependence. I got osteoporosis at 25, and have a fracture in my spine. I've had the weight gain, the yeast infections, the mood swings, tissue damage, cardiac arrythmias, inablility to heal, and a host of other problems with it over the years, but, It probably increased my lifespan by 30 - 40 years.

 

So, it's a great drug in moderation. As with the disease & the drugs, it's always a balance. There seems to be such a variety of drugs nowadays, and the stuff does work differently for everyone, and they all have their flaws. So, it's whatever works best for each individual, I suppose.

 

Hope this helps some! Good luck with whichever route you take!

Nancy K.

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Megan,

 

WOW - That young lady you met is certainly an inspiration! I read one time that most of the symptoms you develop take place in the first 5 years (don't know how truth is in that), but it sounds like the case with this one woman. I just started year 5 so I'm hoping things start to settle down.

In reference to prednisone, I was on 5 mg/day for 3 years with no side effects (that I know of) and, even though I don't suffer with much pain, I did have some in my left leg, knee and hip. That pain went away and then when I came off the prednisone, it came back "sometimes" in the middle of the night when I slept on my left side (which I also do because of reflux).

When I was hospitalized in January they put me on 100 mg/day! When my rheumatologist found out, he went through the ceiling and put me on a fast track reduction schedule. I now back down to 5 mg/day with no problems. The reason he went through the roof is because he knows that Corticosteroids (such as prednisone) strongly increase the short-term risk of developing scleroderma renal crisis (kidney failure). Even though I also have polymyositis and prenidsone is the miracle drug for that CTD, he didn't want to risk it because of the sclero.

It's all a gamble isn't it?


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Megan,

 

as you know from our discussion in our other post, that I started back on Prednisone 10mgs on Tuesday.

It has helped a bit with my fatigue, but not my joint pain .......yet. I do hope it will start to help soon.

 

Last November I was on a two week course of it. 40mgs for one week and then 20mgs for one week and then stopped.

The first week was great, within hours of taking the 40mgs, my joint pain eased and my fatigue disappeared. The down side was that I was a little emotional, and possibly hyper and didn't' usually go to sleep until about 1am.

 

It had problems when I dropped from 40 to 20mgs...........NEVER do that! it needs to be tapered SLOWLY as I found out.

I got nausea and vomitting and felt out of my mind, and even while on the 20mgs my joint pain started to come back slowly. I ended up tapering myself down, and it was not fun. And that is something I do not look forward to when I end this 12 week cycle of Prednisone I am now on, and trust me I will do it very slowly.

 

My main reason for being on Prednisone now, as I have discussed in my other post, is that I also have started Plaquenil, but as it takes a while to kick in, I am taking the Prednisone 10mgs to help me in the mean time.

I have been SOOOO tired, I can barely do anything and my muscle and joint pain was interferring with my ability to do simple things.

 

 

Like many people will say, it is a double edged sword, and it is something to be thought about long and hard before you go on it. It can save your life, and give you your life back, but it does have some bad side effects. You need to weigh it up.

 

I have good and bad experiences from it, most of my bad experience are from bad tapering.

 

Good luck, I will let you know how it progresses.

 

Hugs,

Irene

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I have been taking prednisone (5 mg) for 5 months now. I haven't had any bad side effects that I can tell.

 

And I also am not sure if or how much it is really helping me. I am on so many other med's that it is hard to tell what does what anymore....

 

I sure would love to sit (Indian style) on the floor one day.....let alone touch the floor. So if prednisone can help with that - I would be HAPPY!!

 

Sakar

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Irene,

You are so right that the tapering of prednisone should be slow and the longer one is on it, the slower you should go. Also, as the dosage gets lower, the tapering should go even slower. I was able to taper off faster than normal because I was only on the 100 mg/day for less than 2 weeks. But the important thing is to listen to your body. It will tell you if you're going to fast. The hardest and slowest part is going from 10 mg to 0mg. That can takes weeks. In fact, last summer when I got off from 3 years of 5 mg/day it took 4 months to get to 0.

Thanks for bringing that up Irene.

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Megan, for those of us who have taken pred. it is the wonder drug we all love to hate. I have been taking it since 1985. When I first started taking it (40mg) it made all the difference between living and dying. I truly thought I was going to die and I had three small children under the age of 6. At that time, I could not bath, dress my self or go the bathroom by myself. A couple of times my oldest son had to stay home and help me. Those were terrible times. Then I finally got a diagnosis and started my journey on prednisone.

 

I could function, sometimes 24 hours straight, never sleeping. blink.gif Sometimes I felt like Jeckyll and Hyde, my emotions were running rampant. And talk about gaining weight! I weighed in at about 90 lbs. In 1998, I weighed over 200 lbs., plus other health issues were popping up left and right, high blood pressure, osteoporosis, compression fractures in the spine. That's when I finally said 'Enough!' I knew there were other drugs out there that would be better for me and probably help me more. Tried methotrexate, that was terrible, thought I was going to die again I was so sick. Then a new rheumatologist! Immuran was the next drug, it worked for a while. Then bring on the cellcept. That is my current choice of medication at this time. It took over a year to wean down the pred. I could never get lower than 5 mg, so that is where I am today, and 80lbs lighter and blood pressure under control. Your body makes between 5-7mg of natural pred a day. If you take large amounts of it for a long period of time, your body will forget how to make it and you will (in my case) probably have to take at least 5 mg for the rest of your life.

 

So, good luck, really talk to your dr about it.

 

* Barefut, keep up those kicks! wink.gif

 

~whirlway

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