Hi there,
I was just curious to know how you have tolerated the prednisone all of those years and would like to know what doses you have taken. Thanks,
LEV
Bingethinker is a wealth of knowledge. I miss seeing him on this boardPhatgirl
Hey Lev,
Truth be told, I'm not tolerating the Prednisone. My RD informed me about 3 yrs. ago that I'd never be off the Pred because I've been on it so long. My body had quit making the needed steroids and I had become dependent on the Pred. Early on in my disease, I was up to 40-50 mgs. of prednisone a day. My face ballooned and my weight was up to 310 lbs.
To make a long story short, after many different combos of meds and RA related surgeries, I'm down now to 2.5 mgs of Pred a day.
I encourage everyone to stay away from the Prednisone if at all possible. In Dec. '06 I was dx'd with osteoporosis, a result of the long-term use of Prednisone. At the end of Dec. I suffered a stress fracture in my right leg due to normal walking. No trips, no falls, just normal walking. I've been in a full-leg cast since then because of such a slow healing process due to my diseases.
I hope I've answered your question without rambling too much.
Bingthinker~I'm real sorry to hear of your fracture. That's so scary to know it doesn't even take a fall to cause it once your bones are weak from years of harsh medications. That cast must be horrible to manage.
I'm glad you're here to give the advice about Predisone. Sadly all too often people do not realize the dangers of this medication until it is too late. Honestly I never did. My doctors has been fairly sparing prescribing it but at age 32 I was dx'ed with osteopenia in my hips.....two years later in my spine. They say that no doubt the medications I've been on for so many years has contributed to what is a progressive problem.
Predisone feels so much like a wonder drug it's easy to quickly come to appreciate it's effects. It's very important though that if at all possible work with your doctor to find a treatment plan that doesn't not include daily predisone use. For some; this is not possible. Without it they couldn't even get out of bed.....but for other's it is possible to use it only in short courses during extreme flares.
I am so sorry to hear what the Pred has done to you. I am always grateful that my Dr would not let me have any of it as I have OA as well and she gives me pain meds instead. I got a Pred pack for Bronchitis and kept it so I can take 4mg for emergencies only.
Very interesting,
Did you say that you were on pred for ten years. And, do you take the 2.5mgs to compensate for the total shutdown of the adrenal gland? Feel free to ramble, I have plenty of time and good interest in good things.
Thanks again,
LEV
Hey, Hey, Hey... Bingethinker!! I am so happy to see you are still around and doing ok. I have missed seeing posts from ya. It is weird everytime I think of someone I have not seen on the boards in awhile, they always appear within a few days. I was thinking about ya, and glad to see you are still kickin!
Sorry to hear about your fracture, those are no fun... I know
I saw you reply to another post and was going to PM ya, but I got distracted with something else more than likely. Tellin' ya, I need something to make me less scattered brained.
Hope to see more posts from ya! Missed ya!
June
Hey Lev,
Actually I've been on the Prednisone for 15 yrs., since '91. Yes the 2.5 mgs. does compensate for what I'm missing, but sometimes I cheat and take 5 mgs. for the swelling and/or stiffness. I'm just very, very lucky that my bones have held up so well for so long.
I have been on at least 10 mgs of predisone for at least 30 years. I've been able to off them twice for a short period, but normally every time I get below 7 mg I start to flair all over the place. I do have osteoporosis (my score is -3.3) and I've had 28 major fractures.
But - I can't take the NSAIDs (stomach) DMARDs (liver) or the biologicals (septic joints) so prednisome and pain pills are all that's left in the pharmacy for me. I keep improving though - so far today I've walked 1700 feet with the platform walker and today I walked 80 steps (10 at a time) without anything!
Interesting info on pred., I'm struggling right now. Went from 3 to 2-1/2 last week and today I was reduced to my old swollen,painful self. I took 3 today! and will talk to the doc tomorrow. Honestly, I was doing so well, driving my car etc. Ya never know, Waiting for Remicade/mtx to 'work' for me.Hey Kathy,
Glad to hear that you are imroving and walking as much as you possibly can. I know it was an accomplishment for you. Back before my joint replacements, it was such a task to walk 10 or 15 feet at a time. I was so proud of myself, I wanted an award, a parade and holiday in my name! It's amazing what most people take for granted.
Thanks, bingethinker, that is exactly how I feel! Walked 2200 feet yesterday in three sessions and I really needed an award, a parade and a holiday! I still have hope that I will walk again without assistance (even with a cane).
Der Kathy!!, Sensational!! I'm so very happy for you. feeling better but havin' a flare up right now, so we do need to hang out with people who are doing beeeeettter!! Good to hear from you.