Been on prednisone for roughly 4-6 months now and it's been amazing. I'm trying to stay at 10mg/day but sometimes I take 20mg/day on my bad days to help knock everything back down.
I've yet to gain any weight, my face has slightly filled out but it's barely noticeable and nowhere like the moon face pictures that I see. My appetite is roughly the same, and I really don't notice too many negative side effects. I weigh 150lbs and it's hovered there for the last six months, I have put on no additional weight with the pred.
The only thing I find odd, without the prednisone Evoxac barely works. Well it works but it only works for a couple hours and isn't too effective. Since starting the prednisone, I've noticed that even a single dose makes me produce far too much moisture and I actually start sweating. Sometimes I have to open up the pills and pour a quarter of them out and put them back together. I take this to mean that maybe the prednisone is stopping some of the antibodies that target the receptors the cevimaline binds to where it's effectiveness is ramped up. I don't know, that's just conjecture.
I'm also taking evoxac, plaquenil, biotin, alpha lipoic acid, vitamin d, and following a salicylate and gluten free diet. So I'm really throwing everything I have at my disposal at it and I've been doing really, really well.
I just see SO many negative things about prednisone and how it's so dangerous... my doctor had no qualms on the 10mg/day but sometimes I do go up to 20.
Is there anyone who has been on this stuff for 6 months to several years and can you tell me what to expect? Is it really as dangerous as people make it out to be because it's been a godsend as far as really knocking down my symptoms to some days to where I feel like I had never gotten sick.
Hi Woolygimp,
I'm not recommending or suggesting anything.....all I can say is my Mom (with 3 AI's) has been on a maintenance dose of Prednisone (7-10mgs) for years.....she's 80 and is doing well. Very seldom do we pump it up a bit if she's having an RA flare. Her blood work has been fine and she does not suffer any new symptoms from the maintenance dose. She is also taking Methotrexate and a drug for her MG. Hope this helps.
I was on 10mg pred for 10 years and didnt have any side effects basically...then, after a bad reaction to an IVIG treatment, my doc added
around 8mg of Medrol, and I felt much better on it...so much so, that I stayed on it. After around 6 months, my face started swelling up, (lost weight actually) lost tons of my hair, and my skin became more thin and fragile, and my bone density got much worse. My eye pressure also increased(no glacoma yet) There arent many options for us unfortunately, so we have to outweigh the risks I guess. Wish I could get off the medrol, but right now its the only option for me.
If it helps your quality of life, rather than being stuck in bed, etc...then, I myself would stay on it.
Gursie
Hi WG,
I responded to a post of yours before about this, but I don't know if you saw it.
I would recommend reading the book "Safe Uses of Cortisol", by William Jeffries, MD, FACP. He was a traditional medical doctor, an "old timer" who practiced in the days cortisol was first discovered and synthesized. He was in charge of the Endocrine Clinic and Endocrine Research Lab at University Hospitals in Cleveland; some of his titles include Clinical Professor of Internal Med., Univ. of Virginia; Former Assistant Clinical Professor of Med., Case Western Reserve Univ. School of Med., Former Consultant Endocrinology, Euclid Clinic, Lutheran Medical Ctr, St. Vincent Charity Hosp,etc. I threw all this in to highlight that he was a traditional doc -- not an "alternative", holistic, or complementary one.
Anyway -- 10 mg Pred is the equivalent of 40 mg cortisol -- which is considered a "replacement dose" of cortisol for most males. Meaning, this is the amount your body makes daily naturally. So you are not providing an "anti-inflammatory" or "immuno-suppressive" dose. You are providing what your body needs daily and what your adrenal glands would make on their own if they were working properly. Which means you can stay on this dose forever without a problem-- because it's about the same dose your body would be making naturally.
I recommend reading Jeffries, because he goes into many case studies as examples, and he will ease your mind as to your steroid use. He generally recommends 10 mg of bioidentical hydrocortisone 4 times per day to even out the dosages, but again, for ease of use, and if it works for you, 10 mg Pred per day would be considered equivalent. You have taken over your adrenal axis -- so during times of stress, you will most likely need to "stress dose" with extra steroid. Jeffries goes into detail as to how and when to do that.
Sounds like you've discovered some of this on your own. Jeffries will validate and confirm that you are on the right track, and will put aside any fears of the "dangers" of steroid (Pred) use AT REPLACEMENT DOSES.
I'm glad you've found something that helps you. Read the book, make sure you stress dose when appropriate, alleviate your fears, and have a happy life!
Bella,
Welcome to the forum. What a wonderful post. I looked over the Jeffries book, but haven't yet ordered it. The price is kind of steep, just after getting The Sjögren's Book.
Best,
Soycoffee
wooly, Actually, my neuro has kept me on 10 mgm every other day for over 6 years and I haven't had any problems. She says the every other day is the safest way and the most physiologic way to take prednisone.
I have gotten type 2 diabetes, and some docs think it is from the prednisone. Could be, but it runs in my family and nobody has escaped it. I also have some slight cataracts on my eyes but eye doc says this is normal for people my age.
However, I had to increase the dose to 10 every day in August and am just now tapering down to the 10 every other day again. On the every day dose I started to eat more and gained a few pounds cause I was always hungry. I also have gotten a little puffy in my face. Can't wait to get back down to the 10 every other day.
I am on my dosage schedule for my myasthenia gravis. My neruo keeps all of her myasthenia patients on this low dose as a little buffer or protection against the myasthenic crisis. When these crises occur the diaphram can get paralyzed and send us to hospital and on a ventolator. With the prednisone on board all the time it sort of gives us a little time to get to the hospital. Thankfully, I haven't had to deal with this.Irish ;D