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prednisone

Prednisone – The Drug we Love to Hate

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I’m sure that the majority of people with Lupus (and various other diseases) have heard of Prednisone. I don’t think the title of this post could have better stated how most of us feel about that drug….it’s certainly the drug we love to hate.

Prednisone is an extremely helpful drug for many different conditions. I’ve been on varying doses of prednisone for 11 years now. The highest dose i’ve been on was 60 mg 3 times a day. That was when I first got diagnosed with Lupus. The lowest dose I’ve ever been on was 7.5mg once a day. Right now I’m on 10mg a day.

Now let’s face it. Prednisone is an essential member of my medication arsenal. I’ve been on several different medications for various things, but the only medication that has always remained has been prednisone.

Aside from keeping my Lupus at bay, prednisone has gotten me out of many a sticky situation. When I had that Lupus episode in 2005 when I couldn’t walk, move my hands, etc. due to a growth that had developed on my brain, it was high doses of prednisone that eventually shrunk the growth/tumour.

While this ‘miracle drug’ has done wonders in my life, I have to admit that it took me a long time to realize it. When I was at sick kid’s hospital and was first introduced to this drug, I certainly was NOT impressed. First of all, this drug comes in 5mg pills and 50mg pills. I’ve since gotten used to swallowing a number of pills at once, but back then, I could barely swallow half a tylenol pill. Now instead of them giving me 1-50mg pill and 2-5mg pills, they gave me 12-5mg pills! Imagine having to swallow 36 prednisone pills everyday! And for someone who didn’t know how to swallow pills, geez did those pills taste awful. The gross taste lingered in my mouth 24 hours a day. That’s because by the time the taste was slowly starting to fade away, it was time to swallow another 12 pills! I remember one of the nurses at the hospital teaching me to put the pills in the back of my mouth on the back of my tongue. She said I wouldn’t taste it as much. She was right…and I’ve been putting my prednisone on the back of my tongue ever since.

Sometimes it just got overwhelming. The nurses used to bring all of my prednisone in these little clear cups. I admit that I’m guilty of often hiding those pills in the drawer beside my bed until I had a chance to get up and flush ’em. Silly move, yes I know.

Now the worst thing about prednisone certainly isn’t it’s awful and bitter taste. The side effects are just terrible. I’ve been lucky enough to have experienced several of prednisone’s side effects. I had to have cataract removal surgery on both of my eyes, one year apart. I’m 5’6 and I weigh about 120 pounds, and I have stretch marks from here until next tuesday. I have them on my lower back, on my elbows, and even a couple on my knees. The weight that I’m at now is usually what my weight should be, but combining kidney failure with prednisone is a definite recipe for weight fluctuation. That certainly doesn’t help when it comes to stretch marks.

Another prednisone side effect that I have is avascular necrosis in my left hip and my right knee. Avascular necrosis basically means that there is a loss (permanent or temporary) of blood supply to the bones. This is why I’ve started up again with my physiotherapy, because my hip and knee joint are very weak, and sometimes painful.

Acne is something else I’ve had to deal with where prednisone is concerned. I have a good and knowledgable dermatologist, so that isn’t too much of an issue anymore as it was before.

Let’s not forget those super high doses of prednisone. In 2005 when I was on a high dose of prednisone, man was I ever hungry all the time. I craved sweets all the time…and I was sure to make everyone feel guilty for not giving them to me! I didn’t gain TOO much weight, but man was I shovelling in the food like nobody’s business.

I’m not sure if this is prednisone related, but I also get the shakes. If I hold my hand up, I don’t think I can keep it steady unless I REALLY concentrate.

Last but not least, how can we forget the “moon face”? I used to have a pretty slim face, but ever since being on prednisone, my cheeks have gotten pretty chubby. People think my cheeks are cute and want to pinch them, but I really hate that. I remember a situation where I went to church with my family while I was on a high dose of prednisone. One lady in the church came up to me and said “You look like you’ve gained a lot of weight. I think you’ve been eating too much!” I was mortified! Who says that??! My sister jumped in and said “um…she’s on medication”. Then the old lady said “oh, is she on prednisone?” Then I said Yes. I later found out that she is (or was) a nurse. If she can see that only my face is fat and the rest of my body isn’t, and ESPECIALLY if she’s familiar with the side effects of prednisone, why would she say such a thing? Even if I wasn’t on prednisone….who says such a thing??

So what’s so good about prednisone, you ask? Well prednisone is an immunosuppresant. With Lupus Nephritis, my body’s immune system attacks my kidneys. Prednisone helps stop (or suppress) my immune system, therefore stopping my immune system from attacking my kidneys. This is why prednisone is a popular drug for those who have gotten a transplant of any kind. It suppresses the immune system and prevents it from attacking the new organ.

So what do I think of prednisone? Hey, I’m not gonna lie. I hate that drug, and I can’t wait for someone to come up with a less harsh alternative! But until then, I won’t stop taking my prednisone. It’s very, very necessary. Besides, stopping it on a dime after having taken it for so many years can really mess my body up. Prednisone suppresses your adrenal function in your body, and your body therefore becomes dependant on the corticosteroids from the prednisone and is unable to create it’s own. If you stop prednisone abruptly, especially if you’ve been taking it for a long time, a number of things can happen, such as convultions, extreme fatigue, low blood pressure, low blood sugar….it can even cause death!

So yeah, I know, prednisone stinks. But don’t stop taking your meds suddenly. If it’s time for it to be tapered, your doc will let you know!

0 Comment

  1. Jess January 6, 2008

    Very enlightening. Thanks for teaching.

    Reply
  2. Jennifer January 7, 2008

    What do you do for Prednisone acne? I can’t seem to find anything to help?

    Reply
  3. Miz Flow January 7, 2008

    Hi Jennifer,it took a lot of committment and a lot of consulting/trying new things with my dermatologist, but I was able to get rid of most of my acne in a couple months.First, I seeked a dermatologist in my area that offered Clearlight Acne Photoclearing system (blue light treatment). Basically, what you have to do is lie down while a blue UV free light is placed over your face for a period of about 20 minutes. The bacteria in your skin responsible for causing acne produces something called porphyrins, which is a part of its normal metabolism. What the blue light does is it stimulates the porphyrins to release oxygen radicals. This in turn kills the acne bacteria. The blue light treatment is painless. It just feels like warm air blowing on your face. After 5 treatments, my acne was under complete control. The statistics for blue light treatment state that 70% of people will get 50-70% acne clearing, and luckily I fell into that category. While doing that and also after, I use a regular cleanser called tersaseptic on my face in the morning, followed by dermaglow light hydrating treatment, followed by a prescription cream called benzamycin. In the evening, I use seabuckthorn soap on my face before I go to sleep. The key is to apply the soap to your face, leave it on your face for about 30 seconds, and then wash it off. After that, I apply pure seabuckthorn oil to my face with a drop of the dermaglow, and then prescription gel called tazorac. I know that this sounds like a lot of different products to use, but it has worked great for me, especially considering the fact that nothing else seemed to work for me in the past.I get my tersaseptic and my dermaglow from walmart here in Canada, and I get my seabuckthorn products from seabuckthorn.com. The other stuff is prescription.My face didn’t clear up overnight, but after months and months of failures, I saw results in about 2-3 weeks, and full clearing in less than 2 months. Hope that helps!

    Reply
  4. Ashley May 12, 2008

    Yeah… I had an allergic reaction to a sulfa based antibiotic and was on 80mg Prednisone a day. 2 weeks later, first day prednisone free after tapering… my face is still fat as heck 🙁

    Reply
  5. Anonymous May 14, 2008

    Honey, I hear you so well. I’m also a young female who has been on various dosages of Prednisone since I was 11 (I’m now 32) and still have the round cheeks even though I’m 5’3″ and weigh 117 pounds. I had a kidney transplant in 1989 and now take only 10 mg/day of Prednisone, but I have also experienced (and still experience) many of the side effects you spoke of. Yes, I am thankful that there are medications that we can take, but the side effects sure stink sometimes! Hang in there girl, your positive attitude is so encouraging! As a side note, I use the Obagi skin care system and have had amazing results with it.

    Reply
  6. Miz Flow May 26, 2008

    Thanks for all of the comments, everyone! Ashley – How’s your face now that you’ve been off of prednisone for a little bit longer? Any less moon facey?And “anonymous”, Thanks for your comments and for your encouragement. We’re both on 10mg of prednisone…and still have those chubby cheeks! Nothing is more embarassing than working in a professional office (a bank) and having ppl tell me how “cute” my cheeks are and how much they want to pinch them! Lucky for them, no one has ever actually tried to attempt it!As for your suggestion for obagi, thank you very much for bringing it to my attention. I ordered the obagi clenziderm M.D. system and should be receiving it in the mail shortly. I read the reviews online and it seemed to help about 95% of the people who used it. I opted for the clenziferm and not the Obagi Nu-derm as it seemed a bit harsh. Stay tuned…I’ll be blogging about that experience as well! 🙂

    Reply
  7. Toni September 5, 2008

    Hello!! Okay, I ust be honest..I’m not 20 something..I’m 30. My dermatologist perscribed an antibiotic for my facial acne and it works okay but I’m interested is the blue light treatment. After the treatments, how long do you usually stay acne free? How ofeten to you go for the 5 treatment series? Thank you

    Reply
  8. Miz Flow September 5, 2008

    Hi Toni,When it comes to the bluelight treatment, I did the treatment series once a week. I noticed improvement after about the 3rd session. It cleared my face nicely fot a while, perhaps a couple of months, but I kept on getting those pesky bumps here and there. I almost felt like I had to go back for MORE bluelight treatments…and that simply wasn’t economical for me.However if you read my posts on skincare, you’ll notice that now I use a skin care regime called obagi clenziderm. Another blogger actually recommended it to me. I used it…and my face is clearer than it has been in years. If you go to my blog, then on the right side of the page where it has all of the tags, click on “obagi”. I have before and after pictures, as well as a link for where I buy my obagi on ebay. It’s almost half the price from the ebay seller I’ve found versus other places I’ve seen it on the internet.So, to summarize, for me, the bluelight treatments DID work, but the results were short lived. I’ve also used prescription products from my dermatologist, which would work for a while, then stop again.I’d definitely give obagi clenziderm a try. I’ve been disappointed with so many other products after they’ve worked for a short amount of time…and this is working great for me! Good luck and let me know how it goes!

    Reply
  9. Cesar September 21, 2008

    Hi Im takin Prednisone for my kidney disease that I have for the last two month and I take 40mg once a day. I started to get really deep stretch mark on the side of my stomach. I was just wondering if they go away after you get slowly reduce your intake of prednisone or if theres any cream or medication i cant take to make them go away. It basically look like i got attack by a tiger or something. Any ideas or information would be greatly appreciated. And yes I agree with its “The Drug we Love to Hate”

    Reply
  10. Miz Flow September 22, 2008

    Hi Cesar,Thank you for your question! I know all about the stretch marks, and I wish I knew more about them when I got them. The stretch marks won’t actually go away by themselves when you reduce your dose.This is what I do for my stretch marks. I use vitamin E oil (not cream, vitamin E oil. you can probably get it from your pharmacy or drugstore). It’s clear and it’s pretty thick and it’s kind of hard to rub into your skin. I take some in my hand, and I also take some cocoa butter lotion as well. I rub them together and rub it on my stetch marks (most of mine are on my lower back). I hope that works for you too!–Flow

    Reply
  11. Anonymous December 25, 2008

    I also have lupus, and has so much pain, bloating, dizziness and fatigue that I could not move. Your struggles to lead a normal life is an inspiration to us all. Hang in there, and do not be discouraged.

    Reply

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