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amkoffee amkoffee

I'm down to 6 mg... Finally

I just wanted to get on here and brag a little about myself. This past Monday I started 6 mg of prednisone and it's working. I don't think this is from spending the last year-and-a-half unable to get below 11 mg. So since February I have tapered from 11 mg to 6 mg. I have been dropping a whole milligram at a time every 3 weeks. I know this is super fast so I can't believe I am not having any problems, but I'm thinking that now that I'm down this low I should probably start doing a half a milligram of the time. So I wondered what advice you all had

71 Replies

  • bonnielee bonnielee amkoffee

    So great to hear. Congrats. I am about where you are. Started a 2 years ago and am now about to go from 7 to 6. Just had long-needed back surgery which is wonderful. Right after surgery I was out of pain..well almost, but nothing like I've been suffering from. Trouble is, the pain was so bad for so long it dwarfed my shoulder pain. I was beginning to think maybe I was free of PMR. Not! My shoulders are still giving me problems, but not severely. Rheumy wanted me to stay at 7 until I saw her again..6 weeks. Why? I'm in great shape after surgery. I want to get off this dang stuff. How about 6.5? I've gained 35 lbs over past 2 years, still have a hump below my neck, one cataract, balloon face and a pot belly. I pray this will be the last of PMR for me and hopefully many of you!

    • Poupe Poupe bonnielee

      Hi Bonnie,  glad to hear your surgery was so successful.  I am having surgery next week and my concern has been healing and infection because of being on prednisone.  My surgeon wanted me off the prednisone and my Rheumy wanted me down from 6 1/2 to 5 in two weeks.  I can’t do it since I can feel pain beginning in my hips because of dropping just 1/2 mg. So I am staying where I am.   

      Did you have an issue with healing since you were on prednisone before surgery ?

    • amkoffee amkoffee bonnielee

      You make yourself sound like a monster! It's the hump below your neck that has me concerned. Although I know that it can happen from the prednisone it can also happen with osteoporosis. If you haven't had one recently I suggest you get a bone density test done.

    • bonnielee bonnielee amkoffee

      Not a monster,just sick of side effects of pred. The hump at the base of my neck is fatty substance I have only had since I started on Prednisone 2 years ago. Having just had back surgery x-rays show a perfect back,.now😊 I do have osteoarthritis which is what they did back surgery for. Surgeon said it was riddled with arthritis besides the blown disc. Thankfully he scraped it all away. I have been taking Alendronate since starting Prednisone and calcium with D3. All supposed to prevent any breakage that Prednisone might cause. I really want to get off Prednisone before year's end, but, not sure if that will be too fast. My Rheumy doesn't care about anything but inflammatory markers which have been normal since Jan.

    • bonnielee bonnielee Poupe

      It's been 3 weeks now. Incision healed right up and it's a long one. Like I said before, it takes a complete year to be completely healed, but, I feel great. I'm still at 7 mg with no problems. 6.5 on the horizon. Good luck on your surgery.

    • Michdonn Michdonn bonnielee

      Hi bonnielee, what side of effects have got you down. I hate Prednisone side effects, but my side effects have diminished as my doses have gotten smaller. Without Prednisone I had no life, with Pred I am living a fairly normal life. Think positive, get active as soon as you can, walk a bit more each day, but don't over do it, listen to your body and know your limits. Cheer up life can be good, try smiling you will be surprised. ☺️

  • Michdonn Michdonn amkoffee

    Amkoffee, after last year bad flare I have been super cautious and tapering .5 since 10 mg on DSNS. I am feeling good still very active 75 - 80 a week on bicycle. As long as I not having any problems I going to stay at this pace. About a year now PMR pain free except for a couple of minor flares. Remember it not a race we are just trying to find out how much we need to keep PMR under control. Think positive with a smile on my face.☺️

    • amkoffee amkoffee Michdonn

      I was going very slowly using the DSN S system. And I was doing it at a rate of .5 when I had a bad fall and broke my left ankle in 3 places and sprained my right ankle. My rheumatologist was convinced that it was because of the prednisone. But a bone density test showed no change since my last one. Since then I've also broken a finger.

    • Poupe Poupe amkoffee

      Did you have to have surgery?   I am at 6 1/2 mg having surgery in 3 days and my surgeon is very concerned about me being on prednisone so wants me to drop to 2 1/2 mg before and  after shoulder surgery.   My Rheumy is in agreement since they feel the healing of the tendon to the bone will be compromised if I don’t drop .    

      I am very concerned knowing my body will flare but they feel they will control my pain with meds.  

    • Michdonn Michdonn

      Amkoffee, did you have a good bone density test? If so are you contributing the breaks too bad luck? Sorry to hear of your problems, time for a change in luck. I think I am just lucky sometimes, with all the falls I have taken, both walking and skiing. Sometimes I think I cannot walk a chew gum at the same time. Time for a change in luck, good luck to you! ☺️

    • ptolemy ptolemy Poupe

      Hi Poupe, I recently had a replacement hip and my surgeon wanted me off steroids altogether he was so worried about healing. In the end we compromised on 5mg. I fought quite hard! I seem to have done as well if not better than others who do not have PMR. 

    • ptolemy ptolemy Poupe

      I saw the surgeon about six months before and I was probably around 9mg. Surgeons do seem to have a paranoia about steroids. I think it is the healing and worry of infection, so I suppose I do sympathise.

    • Poupe Poupe ptolemy

      Thank you so much for getting back to me.  This has been worse than thinking about the surgery itself.  Trying to make the decision of how far to drop and the idea of a huge flare especially when the specialist basically want you off of it.  Now their saying after surgery to supplement a lower dose of prendisone with Celebrex

      Have you been able to remain at the 5 mg without any issues?

    • bonnielee bonnielee Poupe

      It was I, bonnilee who answered amkofee about my surgery. In contrast to some of the surgery answers, my Rheumy didn't want me to drop to 6 mg before and after surgery. I've been at 7 for a few months. I had lower back surgery where they took out the fusion surgery hardware, L 4/5 from 4 years ago, re-did it and cleaned up and fused L 2/3. I had spent the last year in hell in so much pain I could only shuffle from bed to chair. So, yes my surgery was needed. Surgeon told me what a mess back was, riddled with arthritis, cysts and disc gunk. Tendons are not involved, just the stretching sideways of those long back muscles so they can get to the spine. Surgeon injected muscles with pain killer that lasts about a week. That really helped, because muscle nerves don't like to be disturbed. About the Prednisone. I'm in USA, BTW, They had me take my regular 7 mg that morning, then gave me heaping doses of it and pednisoline, via IV, not sure of spelling. I saw it on the chart, but, don't remember very well after anesthesia. I just remembered it was a lot. I was so wired I didn't stop talking for 3 days and didn't get any sleep for 48 hours!! But, when back home I continued my 7 mg and I'm fine. So fine, that my depression lifted, the pain was gone, except for pulling of stitches and I've been very, very happy. No pain for first time in 10 years! As far as healing, it will take 1 full year for the cadaver bone to fuse to my own. My 2 weeks xray was perfect . Titanium screws and plastic "scafolding". I'm all for it. The plastic is for older people, like me, 71, with Osteopenia (beginning of osteoporosis). He said it has a little more flexibility. So...they didn't want me to go down on Prednisone at all and gave me large doses for surgery to compensate for my lack of adrenal function. I'm known as a fast healer. Not sure exactly what that means except what it sounds like. Hope this helps you a little. Shoulders are tricky. Besides the PMR pain which isn't too bad, I have arthritis there, too and can't lift my arms too high without some trouble. I need to build up some muscle after long time of inactivity. I wish you the best for surgery and after. I would think they would be more afraid of your adrenals NOT functioning when your body is assaulted by a surgeon. Your body, if not on Prednisone, would normally produce MORE cortisol from the adrenals to compensate for the injury of surgery, not less. At least that's the way I understand it and the way it was handled here in the USA.

    • ptolemy ptolemy Poupe

      I actually had to go up to 10mg after as my CRP went up to 415. I think this was probably due to the op not to the PMR. It meant I had to stay three extra days in hospital until the CRP dropped, which was really boring as I felt fine. 

    • Poupe Poupe ptolemy

      So the surgeon wanted you totally off steriods before surgery then after surgery your inflammation level went so high they put you up to 10 mg during your healing I correct?

    • EileenH EileenH Poupe

      "they feel they will control my pain with meds"

      Well, that'll be a first with PMR! Does it not occur to them that if there were alternatives they would be used? 

      There are quite a few people on the forums who have had surgery at about 5mg and even above with no problems.

    • amkoffee amkoffee EileenH

      I was at 12 mg when I had surgery to repair my broken ankle in 3 places and he had to use screws and plates. So it was not a huge deal surgery but certainly a surgery none the less. And then I was on 6 mg two weeks ago when I had surgery to correct some carpal tunnel and Trigger thumb in my right hand. Neither of these doctors, both orthopedic surgeons, said I had to stop my prednisone. In fact they let me take it the morning of the surgery.

    • amkoffee amkoffee EileenH

      That's very true because he did the surgery the day after my fall. Fortunately I had stopped my Plavix which is a platelet thinner 4 days before my accident. I had planned on having an injection done on my thumbs and my pain management doctor who was going to do the injections insisted I stop my Plavix for 10 days before the injections. And I was on day 4 at the time of my fall

      The surgeon that did my hand surgery did not have any problems with my prednisone dose. But I was at 6 mg and that was just two weeks ago.

      I guess every surgeon has their own criteria even if it doesn't make sense to us.


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