Hi there! Sorry to hear you're starting the lovely prednizone journey. Unfortunately the side effects can be that bad. It's different for everyone. My husband jokes that he has to learn what egg shells to step on with each new dose. I was started on 60 mgs at first. I took 3 10 mgs in the morning and 3 at noon. I got steroid acne really bad (looked like I had the measles) Could only sleep in 2 or 3 hour increments. Had to go on zoloft to help my mental state. Also had to go on bp meds. I had the munchies all the time too. Luckily i was on Methotrexate also so it was hard to gain any weight (wish that were the case now) OH and had some chin hair grow.

I wish you the best of luck! I feel for you. Hopefully you are able to taper down to a lower dose reasonably fast. You can't do it too fast or else it could have the opposite effect. Just know it's ok to cry, it's ok to want to punch something, its ok to be raging on the inside. These are all normal.

I too started on 60 mg Prednisone. I suffered through the side effects because honestly, the way I felt without it was way worse. The insomnia hit me first. I took 50 mg of Benedryl (Simply sleep) about 30 minutes before I went to bed. I slept well. This was recommended by several doctors as safe and non-addictive. I worked pretty hard to control the "rage". I learned to pause before I responded. I did have trouble with my blood pressure and went on medication. I've never had trouble with my glucose. For the hunger, I loaded up on fruits and veggies and low calorie foods. I could seriously eat dinner and still be hungry for a full dinner. Drink lots of water.

The good news is it is usually very helpful in making you feel better fairly quickly. They will then slowly start the taper. The trick is to go slow enough that you don't relapse and have to go back up again.

Sorry you've joined our group because that means you have this lovely disease. But know it does get better and we have a fabulous group here to support each other.

On this forum, several people have expressed that we have a "love/hate relationship" with prednisone. We love that it helps stop and even reverse the progress of PM/DM (for most of us), but we hate the side effects--moon face, emotional changes, an increase in blood glucose levels, strange brain things (racing thoughts, insomnia, brain fog, etc.). In addition, it can cause bone loss, cataracts, etc. Unfortunately, this is the first line of defense, because it generally lowers our inflammation levels. I was in such bad shape, the neuros started me on 100 mg. of prednisone immediately, before any tests were done. But I'm very blessed, because prednisone worked so well for me that I was never placed on anything else. Within three years I was able to wean completely off prednisone, and have been steroid-free almost two years. Yay! Please be assured that there is life after myositis, and even with prednisone.

You mentioned monitoring your blood pressure, but be sure to monitor your blood sugar as well. Because my father became Type 2 diabetic from taking prednisone, I was aware of its effect on blood sugar. So I ate a low carbohydrate diet and was really careful with my eating. Best wishes to you, and please keep us updated on your progress.

I hear you on the prednisone! My story is I wished I had taken the 60 mg of prednisone! I have PM ILD and when diagnosed, I was told to take 60 mg. I did for a few days and had bad insomnia and was very hyper. Everyone is different, I did not have the mood swings or eating issues.

I then called my dr. And begged to go lower so I went down to 40mg. I wish I had stayed and pushed through the side effects so I would have gotten the best results.

I just had a flare and I was at 3 mg every other day and it was raised to 20mg. I again had the side effects but I was going to stay the course and push through and take calming tea, and a relaxant for the insomnia and hyper ness.

I now have more knowledge of knowing how to curb the side effects and think of the big picture and that it is helping me. Hope this helps!-:)

Hi Sonia. Everyone here has told it how it is. Some gets lots of side effects and some get very few. The Rheumatology Nurse advised me to take all the Pred very early in the morning which I did and this worked for me. Sleep got better as I lowered the dose as did the anxiety about everything. I do hope your doc has tested your Vit D levels and also has you on Meds to protect your bones and stomach from the Pred. You have started your journey towards getting stable and well. Hopefully soon as your labs improve and strength comes back your doc will add a steriod sparing drug and start to lower the steriods. The Rheumatologist told me at the beginning it was necessary to hit this disease fairly aggressively. Taking large oases of the Meds is hard but helps in the long un. As Alexis has said its better than the disease. Seven months on I am taking 9mgs steriod and about to reduce to 8mgs. I lo take 100 mgs Azathioprine. Six months ago I could not even remove the cap from the toothpaste, breathless and great pain with sausage fingers. Lost a stone in weight in two weeks and could only move from bed to sofa. It took the full six months but now can do anything within reason, the dreadful fatigue has gone and I am sure with increased exercise I can improve my stamina. Keep the faith that you will get there. Everyone here will help you. Best wishes. Autumm

Sonia I added an anti inflammatory diet No gluten, no processed food, no sugar and no milk products. Followed it closely for 3 months along with my meds and alternative therapies and had few side effects. Be positive and things will go good for you!
"I am a Spiritual being my body is perfect made in his image. The Light of Christ now streams through every cell. I give thanks for my radiant health" (Florence Scovel Shinn, Your word is your wand). One of the many affirmations I try to use daily to bring out the positive ! Roxanna

Sonia, I too was started at 60 mg/day. I haven't taken medication in over 20 plus years so this was very hard for me to do. I know all too well the side effects of synthetic drugs and how harmful they are. (I worked as a personal trainer for years.) When I was diagnosed with PM, I couldn't move without severe pain. My hands and feet were swollen almost twice their size. The only reason I agreed to try Prednisone was because I couldn't live that way. (Who can?) Looking back, I wish I had been started on a smaller dosage. For some reason, the docs always want to start the patient out aggressively, however, smaller doses are quite effective. At any rate, getting off this drug is so difficult. It affects the adrenals and you have to be very careful to taper slowly. I was tapering 2.5 mg every 2 weeks and that wasn't slow enough. Crazy!

On another note, what has helped me is high doses of Vitamin C throughout the day, not to mention Vitamin D3, Zinc, Vitamin E, Flaxseed Oil, Magnesium Citrate and more. When you're taking any kind of prescription drug, magnesium levels decline dramatically. (Read the Magnesium Miracle).

I've written about my PM journey on my blog - www.backtoedenwithliz.com. Right now I'm on a hiatus with the blog - just got tired of it...but it is still up and running.

I wish you the best.

I believe doctors start us on high dose steriods for a better outcome. We are all different and we all have different autoantibodies with this disease. In my case it was necessary to hit this disease aggressively at the beginning. My Rheumatologist is from the best teaching hospital in London. I would be wise to take his advice.Autumm

Sonia, not everyone gets those side effects!!! Really it is not as bad as it sounds. there is a very good book i suggest you get.
http://www.amazon.com/Coping-Prednisone-Other-Cortisone-Related-Medicines/dp/0312195702
Coping with Prednisone. I take Medrol but it is not steroid specific, so any medically prescribed steroid and it will be helpful. These are not the steroids Lance ARmstrong took, those are different altogether.

For me the first 2-3 weeks are the hardest at any high dose then my body gets used to it. I also recommend taking it early early in the day, so i got up and took it at like 5 or 6 am with a small amount of food and went back to bed till 9 or so and the worst of the anxious feeling i slept thru. Then my body adjusted and i got up at 7 or 8 and took it first thing. Some split the dose but again it is an am drug for the circadian rhythm so early am and noon is better than breakfast and dinner.
It is a life saving med and you don't have a choice right now, so let the worry go. You will want to take measures to keep bones strong, have a base line Bone density scan early and keep it up. I get one every year and have avoided the bone enhancers so far, i am at 26 months of steroids and about 12 months collectively in my life before that. I gained weight initially and have lost it with a vegan diet now in year two. Watch what you eat and keep an eye on your glucose when your labs are drawn. Steroids can induce diabetes in some but not many. There are emotional issues and if you lent toward depression then you may find prednisone really hard and switching to medrol may be a good choice for you. I am manic and crazy on pred and very manageable on Medrol. So keep in touch with your doctor if it is making you truly crazy, but again i am managing that, in fact the medrol makes me a bit euphoric... I use it to my advantage!!. I have not had any acne, but i do grow hair like crazy... and i pluck and wax when needed. but i can now live my life so it is worth it.

Keep asking questions, we are here to help...

I had almost forgotten the facial hair. Thanks for the reminder, Shawna. My "moustache and beard" were the envy of teenage boys. LOL But things get better as you taper down. As Shawna said, the side effects are worth it, because you regain much of your former life back. Just being able to walk again, comb my hair, and get up from a chair were big blessings.

So much advice, support, love and humour. I feel very honoured to be accepted by such an elite and rare group of wonderful people. (And I read that we are indeed rare)......
I am following your advice. Take my pred with oatmeal and flaxseed early a.m.. Had to go on actonel because my osteopeenia showed osteoporosis in hip, probably because I have not been able to exercise for so many months. I take all of my vitamins, extra magnesium and am following a near vegan diet. I will start IV's of glutathione/magnesium again with my naturapath as soon as I am able to move a little easier.
The insommnia hit the night of day 2. I have purchased the benedryl (sleepytime) to try tonite and am avoiding napping thru the day.
I am very lucky with my rheumatologist, so knowledgeable. He has ordered bloods every 2 weeks inc. glucose. Neurologist has me set up for 2 MRI's of deltoid/trap muscles. Also sched. for CT scan (to look for cancer) they tell me it hides.
Emotionally I feel stronger & more positive now that I am taking the prednizone As many of you told me, getting the diagnosis seemed to be the hard part.
Now Shawna and Nanny what's all the fuss about facial hair. Hubby just offered to share his shaver.
Whatever we are dealt, we will deal with because we know HE will never give us more than we can bear.....
Love, peace and be well to all. I will start a new thread next report.

Hi Sonia. It's good to hear you so cheerful. We are so fortunate to have each other for great support. You are now going through the Myositis work up where they will be looking for any hidden nasties. These work ups are universal. Rheumatologists from all over the world meet together at conferences to discuss people like us, research for us and decide on the best treatment. No matter what country we live in the treatment plan is the same. Six months down the road God willing you will be ok. Autumm

FYI, there is an Osteoporosis forum here at DS. It's not as active as this DM/PM forum, but it is full of good info.