Home Forums General Discussion Good News – Prednisone Down!

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  • #302919
    whaleharbor
    Keymaster

    I just wanted to share….

    After YEARS of prednisone, I've reached another lowering milestone.  I've gone from 5mg every other day to 5mg every third day.

    I know it doesn't seem like a lot.  Took me 3 months to be able to get to this point.  But it's a big step for me.  Thank you RBF, thank you Dr. Brown and thank you mostly to all of the wonderful volunteers who have helped me every step of the way.  You are all family to me.  :dude:

    Now on to the next step on the road….

    — whaleharbor

    100 mg Minocycline every other day (Actavis Brand)

    #335761
    Donna RA
    Participant

    That is certainly a milestone, congrats!  I am similar in that each time I try to lower my dose from 2.5 mg daily, I am in so much pain it scares me back into taking it.  It's such a low dose, per my Doc, that he thinks it shouldn't be a problem.  I think he's never tried doing this himself.  Have you had much pain while rolling it back?

    Thanks,

    Donna RA and Lyme

     

    #335762
    whaleharbor
    Keymaster

    Yes, pain, swelling anf fatigue in rolling back but I seem to have reached a point now were I have stabilized at 5mg every third day.  It's taken months to get here.  Prednisone is certainly a double-edge sword isn't it?

    I'm going to stay here for a while until I see him in November and then see if I can go down again from there.

    His goal is to get me to a point where the only things I take are Mincocycline and Celebrex.  I share his goal…almost…I want to be able to get rid of teh Celebrex too….but one small glacial step at a time.

    Hang in there.  We can both get off of the pred together. 

    – – whaleharbor

     

    100 mg Minocycline every other day (Actavis Brand)

    #335763
    lynnie_sydney
    Participant

    Wonderful news in reaching that milestone whaleharbor! What a testament to your commitment and persistence. You may remember the following but thought it worth re-posting them in case anything helps with the next step. 

    Hi everyone –  I am pasting a response to this question that I found from our Board from 2006, posted by a very experienced long-term APer who weaned herself off pred after 22 years of taking it! BTW there is some great info on this you can access from the Old Board. Just follow the links that Cheryl has provided in the main menu of this Board. When the Old BOard (which will be blank) comes up, just click on the search function on the left. When this comes up to the right of your screen, type in something like 'prednisone weaning' and a host of questions and responses will come up. Meantime, here is Leslie's post from 2006:

    Hi Janie, I was on prednisone for 22 years before AP. It took me 2 years on AP to finally get off that drug. The last 5 mg are the toughest. I dropped about 1/4th mg at a time (used 1 mg tablets to do that). I would stabilize and then drop another 1/4th mg. And so on — it was a longer process but it worked.
    Within 2 days of being entirely off prednisone I had an “emergence reaction” that a doctor described as my body realizing there was no more exogenous cortisone and my adrenals had to produce now. It was a very difficult time and I hurt worse that I had ever experienced. But, when it was over, it was like peace had decended upon me and I KNEW I was permanently off that drug.
    Have been off prednisone for 7 years now. Hope you can take your time and do it the way you need to. Don't rush this one and be sure to keep your doctor in the loop. I wish you good luck with this tough stage of your road back

    Posted by Leslie (sle) AP ~9  years                                                                                                                    

    Additionally, you may find helpful this askthedoc article that I found. It goes into  weaning off, how difficult the last 5mg (and below) are and what might help the adrenals at this time.  Link to it is below.
    http://www.westonaprice.org/askdoctor/steroids.html

    Finally, here is a link to a thread in which Randy posted some really useful info about weaning off pred.

    http://rbfbb.org/view_topic.php?id=2168&forum_id=1&jump_to=18694#p18694

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #335764
    whaleharbor
    Keymaster

    Awesome links and encouragement Lynnie!

    Thank you, thank you, thank you.

    – -whaleharbor

    100 mg Minocycline every other day (Actavis Brand)

    #335765
    lynnie_sydney
    Participant

    You are very welcome! Also, need to add that the link to the Old Board doesn't work currently. Lynnie

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #335766
    jane
    Participant

    boy oh boy if that doesnt give us all some courage than what wil…i am sooo glad to hear that this is possible…i am flying  to see dr.s in iowa on the 25'th of october but do not want to get my hopes too high …also have to face my canadian dr. yet for one appt so that i can bring with any pert. labwork…i excpect some backlash from him and some not so pleasant words…but am so enthused about trying this…maybe i too will wean myself off prednisone someday…

    #335767
    Rosey UK
    Participant

    I am down to 7.5mg of preds; my GP said I now have high blood pressure and she blames the preds. She gave me a prescription for BP tablets but when I read the side effects I decided to find alternatives. I have done it's called Resperate you put earphones in and just listen to the breathing instructions. I have a month before my next visit so I hope it's worked by then and if so i'll tell my GP about it.

    I think it's amazing you getting right down on the preds I hope I can do the same although I had a flare just yesturday and was in bed by 7pm.

    well done ROSEMARY

    #335768
    whaleharbor
    Keymaster

    Jane, I see you have PCOS.  I have “suspected” pcos.  I say suspected because they've never found any cysts and my blood work doesn't fit the profile but  my Reproductive Endocrinologist told me that the diagnosis is one made when they can't figure out what's wrong.  He also told me that he thought that it was all autoimmune related and that some day someone would figure that out.  Interesting hugh?  I also have participated on some other pcos boards and there is apparently a lot of us gals with pcos and AI.  My cycles seem to be beginning to normalize a little since going off of gluten.

    Rosey and Jane: The lowering of the pred has been slow going and not at all easy.  I never thought this day would come but my traditional (non-ap) rheumy has told me it's time.  Incidentally, he is now beginning to prescribe AP to other patients. 

    My traditional rheumy told me he can't argue with the results.  I'm so glad that he is willing to consult with Dr. T on my care and so glad that he is open to learning etc…He's a very good man with good intentions….though I' still wish we didn't all have to be our own medical researchers…

    Let's all pray for eachother that we can be well enough to get off of the prednisore.  It's a miracle drug and it saved my life but…

    – – whaleharbor

     

    100 mg Minocycline every other day (Actavis Brand)

    #335769
    Parisa
    Participant

    Whaleharbor,

    What great news!  It took my husband a long time to get to the point where he could start lowering his prednisone and a couple of times when he started he had to up his dosage due things beyond his control.  He was determined however to get off that drug and when things finally calmed down was finally able to start the slow, slow process of weaning.  I can remember when he got to 5 mg and being so afraid that something would happen and he would be right back to where he started from.  He has now been prednisone free for 10 months!  What a relief.

    Donna,

    Try every other day dosing.  If you are at 2.5 daily, switch to 5 mg every other day.  It gives the body the same amount of drug but also starts to wake it up on the off days and lets it know that it needs to start working again and making its own cortisone.  When 5 mg every other day feels comfortable (after about 3 weeks), then edge down to something like 4.5 or 4 mg every other day.  This method worked well for my husband.

    #335770
    Donna RA
    Participant

    Parisa,

    That sounds like great advice, not something I previously considered.  I never wanted to up my dose, but what you say makes sense. Thanks!!

    Donna RA and Lyme

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