I have been on prednisone for a long time. About six years now. My dose is pretty high I’m on 50 mg per day however that is down from 80 mg a day. The side effects are devastating. Today at my physical I found out that I have full-blown osteoporosis and also my blood sugars are high and had to get started on diabetic medication. Not a very happy day! Tomorrow will be better and I will start on a plan to address these issues. But for today I’m sad.
Hello Izzy,
So sorry to hear the out come of your appointment and that's all you need ontop is diabetic medication...have they mentioned weaning you off the steriod slowly and trying you on another med instead.
I'm adding this link on osteoporosis as it's in full detail about the disease.
http://www.niams.nih.gov/Health_Info/Bone/Osteoporosis/osteoporosis_hoh.asp
Best of luck Terri :)
Hi Izzy, I was started on 40mg of prednisone about 2 weeks ago because of a horrible flare-up I got. I have never been on it before. I have recently been tapered off of it, but my bones have been starting to hurt again and my joints are staring to swell again like before. I shake like I have parkinson's (no offense) and I am in constant pain. I go see my rheumy today. I am afraid of the Prednisone because of the side effects so I know what you mean. Have you tried other medications to help slow down osteoporosis?
Hi Izzy
Do you believe in prayers, do you believe in Jesus? there is noting impossible with man when he/she has God.
I totally understand what you are going through, my wife was on high dose predisone (60mg) for a long time, her hair was falling off, her face was swollen, her temperature was constantly between102-104, she was always on tylenol to suppress her pain.
We prayed, prayed and prayed. Now she is healed, no symptoms for almost a year now. and she has not being on any medication for about a year.
I will join you in prayers that you will be fine and be taken off the predisone and you'll get better sooner than you think.
Stay strong
Hi. I’m sorry you’ve been on prednisone and I’m sorry you had to start diabetes medication in addition to finding out how compromised your bones are.
I can relate to taking 80mg of prednisone daily as that’s been my dose for as long as I can remember. I’m tapering down slowly, but it’s tough going. It’s good that you’re tapering down as well.
At this point, my new rheumatologist wants me completely off prednisone as the side effects of being on it for over a decade are catching up with me. She suggested methotrexate. But when I read the side effects, I wonder which is worse.
Thank you for your post and allowing me to vent a little about my situation.
Best, Kim
What is considered to be a high dose of prednisone? And is there an average amount of time people are on them? That sucks to hear of the side effects... makes me not look forward to being on prednisone for the long haul, that's for sure. Good luck getting everything figured out more tomorrow! :)
Prednisone has devastating side effects if used long term. It should only be used short term for organ involvement. Your dose is very high. I've had Lupus for 20 yrs & had very large doses up to 1,000 mg IV over 3 days & 60 mg by mouth for Nephritis. There's a good choice of biologics, immune suppressors that can help you use Prednisone sparingly or not at all. I'm on 1,000 Mg Cellcept that has allowed me to wean down on Prednisone to 5 mg. Not sure what your Lupus symptoms are but you might want to discuss some form of steroid sparing agent with your Rheumatologist.
I appreciate all your replies. Thank you.
I am tapering down as fast as i can. 2.5mg every two weeks. I hope to continue until completely off prednisone. I have Lupus with vasculitis so symptoms are always major... Like now I am fighting Gastric Parasis and Interstitual cystitis along with Lupus fatigue and body aches, sjrogrens disease, episcletitis and skin foliculiitis and autonomic and poloyneuropathy. Every time I turn there is a new organ or body process affected. It is like russian roulette. So prednisone has been a life saver as well as a curse.
Yes I know Jesus for the person who asked and I know all is possible and I believe that. I pray everyday for all of us with Lupus. I wouldn't be able to handle this without Him. But I do appreciate all prayers. I started walking today, my hip hurts really bad when I walk...but I will continue to do what I can with what I have been given today.
For the person who shakes, I do too. My grandkids are always asking me why I shake. I feel sad about that.
I am seeing a new Rheumatologist soon, suppose to be top of the line. My neurologist wants more aggressive treatment. Not sure how long before I get in to see him, about a 3 month waiting period. But I will wait.
Also having wrist surgery for a fractured wrist that happened over a year ago and won't heal (now I know why).
Thanks for listening.
Bless your heart! Prednisone is a miracle drug, at first....then it becomes a nightmare. I've been on it for over 10 years and have suffered horrible side effects. I'm a type 2 insulin dependent diabetic now. I, too, have osteoporosis and went blind within months a few years ago. Had to have cataract surgery on both eyes and now my vision has been restored. My rheumy has tried everything to wean me off of prednisone, but we get down to 5mg and my SLE flares so bad that we have to go back up. I am 51 years old and don't know what else we can do, but I refuse to give up. My body hurts all of the time and the side effects make me so sick. My mission is to fight and continue to spread the word so we can find a cure!
Love to all,
Lori
I have diabetes from the prednisone too. It stinks. Unfortunately, the prednisone is what is keeping me alive. Hopefully the diabetes won't kill me slowly! I have some diabetes support groups on facebook that have helped me with tips and tricks and if you like you can contact me and I'll share them with you.
I have the shakes too. It feels like I am out of focus and can not get my body or mind to calm down. My teeth have been loosening too. I am up to 20 mg a day of prednisone along with a new prescription of cellcept. I am hoping the cellcept will work. I am worried about how dizzy I have been. But with the amount of prednisone I am on, what is most concerning is the inflammation at my neck, face, and eyes. The severe pain with it is horrid. You mentioned the shakes, and I was wondering if you experienced any of these other issues when you were having that issue. Please let me know. Any advice would be much appreciated.
I shake, too, and fall down a lot. My most recent fall was awful. I hit the concrete and broke two toes, hit my knees, wrists, my head, etc. Still getting over it and it has been over 2 weeks. Healing takes forever and I never really recover from things like this. I bounce off of the walls in my own house.
Right now, I'm taking injectible methotrexate to try and get off of the prednisone. I give the injections to myself. The pill form of metho made me very sick and we're hoping the injections won't be so bad. Benlysta literally killed me and I ended up on life support for 5 days and was in rehab after that. Cellcept, mobic, cytoxan, enbrel, plaquenil, etc....been there, done that. Nothing works for me.
I pray that the meds work for all of you and know that there is something on the horizon for all of us! Keep the faith and stay strong!
Lori