Lupus

Thursday, October 27, 2011

The reality of predinsone

Tapering down on prednisone can be one of the hardest things to do when suffering with lupus.  I call it my abusive boyfriend and we have a love/hate relationship. I have been on this drug for almost three years.  I have been on high dose and low dose and moderate doses.  My normal dose being 4mg low dose, and I never thought the struggle with coming off of a non addictive drug would be so hard.  It is funny when people ask me if I am an addict because of prednisone, hehe, there is NO rehab for prednisone, I wish there was.  It is not addictive, it doesn't make me high, it just makes my inflammation so much less that I feel MUCH better.  Our bodies (everyone healthy or sick unless they have an adrenal gland disease, makes this hormone) Cortisol (hydrocortisone) is your bodies naturally producing steroid hormone.  Also know as glucocorticoid, which is produced by the adrenal gland. Essentially this is what prednisone is, being that prednisone is the synthetic, man made version of this hormone.  When you take prednisone even in short term you must start high and go lower on dosage.  Tapering.  On long term use the body gets lazy or smart, whatever, and your body stops producing this hormone, or depending on dosage relies on the extra hormone.  For healthy people who go on this drug or for others that do not have lupus or lupus like disease, can taper and just have the normal bad effects of tapering.  Moodiness, soreness muscles and or joint, fever, nausea and vomiting and most dangerous adrenal crisis.  These are the effects or withdrawal symptoms everyone gets from taper off of steroids, sounds bad enough right.  It must be done slowly and under a doctors care.  When one has lupus, we get all of these and the added bonus of lupus flares.  Which can cause all of the withdrawal symptoms ten fold.  We can normally feel withdrawal type symptoms daily from lupus with out withdrawing, because these are just symptoms of our disease.  When I taper I feel all of these withdrawal symptoms with depression.  Every thing seems sad, and I am very upset with my disease during my tapers.  I want off, there are many side effects from being
on steroids some of these I have had and some I have had to fortune to not suffer.  Weight gain, moodiness, sleeplessness, increased sweating, high sugar (diabetes), fluid retention, acne, stomach bleeding and ulcers, higher cholesterol levels, higher blood pressure, early cataracts and glaucoma, osteoporosis, muscle inflammation, adrenal gland suppression.  I have some of these but not all, but getting off is much more of a discomfort than being on.  Prednsione can make someone with inflammation feel so much better, it made me walk again within hours, it is a miracle drug for so many diseases.  BUT it can also become so damaging, it is a double edged sword, and I hate to love this drug.  This is why we need more drugs, safer drugs for those of us with lupus and other autoimmune disease like lupus.  I hope more people can understand the effects of prednisone now.  We are not drug addicts, and I am not knocking drug addiction it is a very serious disease, but I am not getting high from prednisone I am just trying to live better on it.

8 comments:

  1. YOUR ARTICLE IS SUPERIOR. I HAVE BEEN ON IT 3 YEARS AND I CAN ATTEST TO THE UP, DOWNS AND SIDE WAYS OF IT. I WOULD MENTION WHAT IT DOES TO ONES MOUTH AND TEETH, THE SORES AND THE DAMAGE OF THE TEETH. I WANT OFF IT SO BAD I CAN TASTE IT. I AM A GASTRIC BY PASS PATIENT 8.5 YEARS AND WORKED SO HARD TO GET THE WEIGHT OFF, BUT THE DREADED "P" AS BROUGHT SOME BACK ON. VERY, VERY DISHEARTENING. THANKS FOR TAKING THE TIME TO WRITE THIS AND I LOOK FORWARD TO READING MORE!!!!! SINCERELY, PAUL MURRAY

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  2. Very good article. I HATE prednisone, and refuse to take it unless it is an absolute must. It makes me morbidly depressed, major mood swings, bloated - you know, all that good stuff! I am 5 months into the new drug, Benlysta, and it's like a miracle now. First few months, not so good, but after 5th infusion, I feel like a new person - at least this week! Still on the MTX, Cellcept, etc as well. Perhaps you can look into Benlysta and get off the P??? Stay strong!! Tracy :)

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  3. Paula, Thank you so much for your comments, I am so happy that I could capture in print the bad and ugly of prednisone for you and hopefully others feel the same way. I am so sorry about the struggle with your weight on prednisone, I know how it can put on weight without even eating more than normal because it multiplies fat cells. We def. need better medicines. I wish you luck on your journey through the depths of lupus. Best wishes and gentle hugs.

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  4. Tracy, Thank you for reading and responding to my article on prednisone. I get depressed when I taper, I am angry with my disease, sad that I am so debilitated from it, and envious of others that are healthy. Tapering makes me feel like I am so unfortunate but when I am on a stable dose I am normal. It would be awful to feel that way the entire time on pred. I am so happy that Benlysta has worked well for you, and I am looking forward to hearing about your future success on the drug. I asked my rheumy about it just last week and he said no. I wrote about it a few posts ago on this blog. It was a very sad day for me. Thanks for your encouragement, I will take all that I can get! Best wishes and gentle hugs.

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  5. Fantastic article! I've yet to have to take prednisone but you have just upped my knowledge on ot. Thanks!!

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  6. Thank you for your comments, it means a lot to me that you took the time to read my post and leave me a message!! Best wishes and gentle hugs!

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  7. Hi, I used to be DragRaceGirl on Dailystrength. I guess something went wrong with my password. I need to sign up again. I really appreciate your information on prednisone. It is a shame that something that brings us relieve and comfort is so harmful to us. I was doing ok with 10 then 15 now I am up to 25 due to a major flare. Without it, I would not be able walk or work. Thanks, Rhonda

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  8. Rhonda, Thank you so much for reading and commenting on my post. I am so sorry that you are having to deal with the dreadful prednisone. I hope that you continue to read and follow my blog and please give feedback. Best wishes and gentle hugs. P.S. I love DS it has given me so much support and strength, the people on our lupus support group are wonderful.

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