LPey,
I might have a different description. We take the steroids to prevent permanent damage from inflamation. The immune system is attacking our healthy tissue and that must be stopped. some of us take the steroids and have very few side effects. I am using a vegan diet to ward off the diabetes, the eye changes and the bone loss and have done quite well on my 29 months of steroids now, from high dose down to 4mg and back up with a flare.
I also have not become immune compromised ever, even on Steroids and Cellcept. Never got a cold or anything... So watching the blood levels and asking the docs they can tell you if you are getting into the immunocompromised zone i have not.

It is a risk benefit analysis you need to do. for me the risk of not swallowing and not walking is too great to want to stop the steroids too soon. I do hate them and will strive every day to get off of them in time, but i dont' worry about it very often. I am doing the most i can for my body. I have managed the weight gain with my diet too. Dr. Joel Fuhrman has a good book called Super immunity that i follow. His teaching is that we with auto immune disease want to reset our immune system which i find much more reasonable than the suppress or strengthen it analogy. It is a complex system and we just want to reset it to normal if we can.
All the best to you, shawna

ShawnaN, thank you for replying. I'm a big supported of Dr. Joel Fuhrman -- love his books and believe he is right on track. Diet/nutrition is the biggest part of the picture, in my opinion.

Yes, I agree that not being to move/function is not an option -- staying mobile is key to living, especially with PM. I asked if anyone had been successful in getting off this drug because I've never heard anything like that....everything I read talks about people being on this med for years and years. This is not healthy -- the sad part is that most physicians don't know the long term effects of the medication they prescribe.

Dr. Mercola in his book, Take Back Your Health, talks about diet and auto-immune disorders. One of his patients wrote their success story in that chapter --- she had PM -- and was able to completely reverse it with diet. This is what it's all about. She was on medication but it made it worse.

My goal is to get off this nasty medication once and for all and I'm determined to do it. :)

Hi, LPey. Yes, I successfully weaned off prednisone after 3 years of use, and have been off it now for 2 years. Like you, I really wanted to get off of it. I was blessed, because my neuro treated PM by introducing only one med at a time. Because prednisone worked so well for me, he did not introduce any other meds.

I did lots of research online searching how to wean off long-term prednisone. Everything I read said that it was difficult or impossible to do so, and that the final 10 mg were the most difficult. Many doctors said that in order to do so, a person must support their adrenal glands. Two doctors (M.D.s) recommended using a supplement called Drenamin (from Standard Process). So I started taking it at least a year before I was successful in getting off prednisone, and continued taking it for about a year afterwards.

When I was down to 5 mg of prednisone every other day, I started to feel weak and felt like I was having some difficulties. My current doctor knew my goal for getting off prednisone, and she switched me to hydrocortisone (generic form of Cortef). She said that hydrocortisone is bio-identical to the cortisol manufactured by our adrenals, and that it has a shorter half-life (thus leaving our bodies more quickly). Because she doesnt like steroids being taken every other day (said its too hard on the body), she placed me on 5 mg of hydrocortisone daily. However, because prednisone is 4 times as potent as hydrocortisone, my daily dose of hydrocortisone was actually half of the every other day prednisone I had been taking. With daily hydrocortisone, I actually felt stronger and better. We then weaned down from there, and now I am steroid free.

I really appreciate this doctor, because she thinks outside the box and is willing to try natural treatments first by recommending specific supplements. For instance, she told me to take CoQ10, because it is good for the heart and muscles at a cellular level. She found my thyroid problem by running a blood test that no other doctor had run, and prescribed a natural thyroid med. She made sure I was on a gluten-free diet and told me that Gluten is like a poison to anyone with an autoimmune disease. She also encouraged me to eat vegetarian meals often.

Sorry for the long response. I just wanted to encourage you by letting you know that it is possible to get off prednisone. But, remember, were all different. What worked for me may not work for you. But dont give up. Best wishes to you for success!

Lpey, i do hear of folks off of the steroids on both Daily strength and TMA. some get to 4 mg or so and just stay there, which is less than the body makes naturally, so less side effects.

I totally believe in the bodies ability to heal itself, but i must maintain some functionality. I got down to 4mg and took a plane flight and was back to square one with the oxygen derpivation my disease kicked again into high gear so back up to 30mg... Now back down and will decrease 1 mg a month and see if the IVIG holds me.

I am not sure i can get fully off, but i am doing everything possible.
My best to you, Shawna

I got off but it took a long time. I started tapering in August 2008. I took my last dose 12/10/12. I've not taken any sense. It was an incredibly slow taper with the last 12 mg taking the longest. An incredibly long time and I wasn't sure if I could ever get off. I was on an every other day schedule after about 20 mg. That means I took it one day and none the next day. When I got down to 3 mg, I was on that level for a few months. After 3 months at 3 mg, I went down 1/2 mg every 2 weeks. During that time, I checked my CK monthly to make sure I was okay. I also checked my adrenal glands a few times.

I never had any of the long term side effects (except the moon face and weight gain...which hasn't gone away). My eyes are fine, no diabetes, and my bones are still strong. I contribute that to my every other day schedule, calcium supplements, and controlled diet.

In trade for the Prednisone, I gave up strength. I really struggle with stairs and my balance is off. Is it worth it? I'm still trying to decide.

I also do a 25mg Methotrexate injection weekly. The Methotrexate is probably key to me getting off. My Ck last week was 96. This is lower than it has been since I was on high dose Prednisone.

So morale of the story is you can get off but not everyone can without relapse. Once you get down around 7 mg, the side effects are significantly reduced.

Best of luck!

Do you take a sparing drug to help keep inflammation suppressed and enable you to get off the Pred.. I take Imuran . Diagnosed PM in August 2012 , my Rheumatologist has me on the following taper. Started on 60 mgs down by 10mgs a month until I reached 20mgs then down by 5 mgs a month until I reached 10mgs then down by 1mgs for a month. I am now on 7mgs and so far so good. It's not easy. The lower the dose the harder the taper, one just has to push through it and get to the next level. I am hoping to reduce by 0.5mgs once I reach 5mgs but may have to remain on a very low dose to suppress my antibodies. I don't sweat about it. Have complete faith in my Rheumatologist.

Hi LPey: I am in the middle of a Prednisone taper. When I got below 10 MG a day I got really stiff in the hands and other joints. So I read up on a taper that splits the dose during the day; so I took 5 MG in the morning and 5MG about 1:00PM. The 1/2 life of Prednisone is about 5 hours - so that kept a more level dose in my system. Every week I have tapered the afternoon dose by 1mg until I got to 1mg., then I split the total dose again (so a total of 6 mg). Now I am doing 3mg in the morning and 3 mg in the afternoon. In a week or two I'll taper the afternoon dose by 1 mg, and continue to taper by 1 mg until it's gone, then split the morning dose again into a morning and afternoon dose. Because of the more level amount in my system, this style of taper has sure helped me so far. I also take an over the counter inflammatory on the days I lift weights so it helps with any residual stiffness in the morning.

I was diagnosed with Necrotizing Autoimmune Myopothy (like Polymyositis) in August of 2012 and was at 80mg of Prednisone a day for 5 months - resulting in steroid induced cataracts. So I am doing a fairly rapid taper so I can have cataract surgery in August. If I have to stay on 5mg a day to stay healthy, though, I am good with that. As Shawna said, that's about what your body makes so damage is pretty minimal.

Forgot to mention that my doctor has me taking a natural anti-inflammatory daily. I use InflamericZyme (aka, Joint Comfort) from Olympian Labs. It has boswellia and tumeric in it, which works better for me than tumeric alone.

LPey, Thank you for the article. I am on 8mg of prednisone. I flared when I got down to 5mg. I would like to taper, but my adrenal glands seem to be the problem. Some people do get adrenal insufficiency and are unable to taper below a certain level.

I had one endocrine doctor tell me I had adrenal insufficiency. I will be getting a second opinion soon. Symptoms of an adrenal problem are: low blood pressure, low sodium, low blood sugar, dizziness, extreme tiredness during the day, waking up a lot at night, blurry vision, headaches, nausea, diarrhea. These symptoms may not all happen at the same time. Only during an adrenal crisis then they do all happen together.

I get an occasional low, low blood pressure. I would have secondary adrenal insufficiency caused by prednisone. Secondary is not as bad as primary adrenal insufficiency. My endocrine doctor would switch me to a different form of prednisone like dexamethasone or hydrocortisone. The doctor would give me different dosages of cortisol to take at different times of the day.

You can taper off prednisone without a sparring drug. The idea of the sparring drug is it slows down the progress of the disease. Many doctors use the sparring drug as a matter of routine. My doctor would like for me to take cellcept again. I will try it after seeing the endocrine doctor. Cellcept caused my blood pressure to drop severely and so did MTX. I am currently not taking a sparring drug and I feel fine. I would however like to take something to slow this disease down if possible.

Shawna and Nanny mentioned the importance of a good diet. I am also gluten free. I think a good diet is very important to lower inflammation, cholesterol, and some of the problems associated with DM.

DM/PM is a rare disease. There is much research that needs to be done to find effective meds that work and do not cause problems.
Good luck and keep us posted.

I have successfully tapered off prednisone. I was on it for 10 months. Began at 80mg for 2 moths then down 10 mg every 4-6 weeks. Once I got to 20mg I tapered down to 15mg, 10mg, then 5mg. I am very blessed my body handled going off the medicine very well. But in the process, I gained about 40-45 pounds, was put on blood pressure medicine, diagnosed with retinal vein occlusion, and had some cardiac issues. My rheumy believes a lot of that was connected to the prednisone. Unfortunately it was some of the "necessary evils" I had to endure. But I'm happy to report that things are getting much better. Besides, I dont think my poor husband could endure any more of the prednisone mood swings!

Hi LPey
Started on 60mg of prednisone last year today. Am at 8mg going to 7mg in about 10days. I am at the level where my adrenals need to kick in and my body talk practitioner is working with my body to get them going again, they are being stubborn but they will start, I think they have because I am feeling good. I agree with Nanny and the others who are using alternative therapy to aid in the medical model. My rheumatologist keeps saying treatment not cure however I do believe that my body will fix itself once it has everything it needs.
I too take Q10 and some other supplemental antiinflammatory and immune system supports. I believe that is why I am doing so well. Reiki, reflexology and body talk have all helped tremendously!
I have been going down 1mg a month and reading some of the splitting decreases I think my GP and I are going to talk about that so when I get to 6 I will start doing that.
Sending good energy to you and your journey!
Roxanna : )