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I'm dazzled how so many of you change your doses. Since Ive been 1 month on 40 and today started 30,

Posted , 10 users are following.

Elijo
Elijo

I see my MD on 12/9, had my lab work this AM.  I started on 40 one months ago, reduced to 30 starting today as per his instructions.  I feel good, and from what many of you say, I'm going to have more "'rough" times as this progresses, which I dread.  I did take your advice and not "pushing" myself as much because I feel so good (in such huge contrast to how I felt before).  I guess I'm a newbie learning from all of you experienced folks.   By the way, one comment by John was he felt faint when getting up fast...  don't forget when you do get up fast the blood goes south and you will feel faint.   Elinor

2 likes, 21 replies

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  • pam7653
    pam7653 Elijo

    Posted

    You must be your own advocate when it comes to

    your dosage. I call my Rhumy whenever I feel I'm having a flare, which has only happened once in 2.5 years. He agrees with me to up my dose or continue to drop my Prednizone. He wants me to keep lowering it but let's me decide what works best for me at the time.

    • Elijo
      Elijo pam7653

      Posted

      Thanks Pam, and I'm so glad for you that iyou had only one flare-uip in 2.5 years, so maybe it won't be so bad after all!  You're so right, we know our bodies best and exactly how we feel.  I got up too early today, 4:30, could no longer sleep, and that was a mistake that I've done a couple times, NOT a good idea.      So you've been going through this for quite a while.  What are your side effects from the pred?  Elinor
    • pam7653
      pam7653 Elijo

      Posted

      The only side effects I seem to have is bruising on my legs, that's the worst. I haven't seen a weight gain, nor an increase in my appetite. Of course I bleed easily and sometimes struggle to get it to stop, even the tiniest cut. I feel so much better since I got on Prednizone so these side effects don't bother me. I can live with it! I noticed my 3rd year more muscle loss in my legs. I hear that's normal too.

    • Elijo
      Elijo pam7653

      Posted

      Thanks, Pam. it looks as if you tolerate it well.  i, too, do not greatly mind the side effects because I feel so good 9in contgrast!)  I cu myself ove a week ago, itis jus beginning to heal, if I'm careful (on the back ;of myh hand), yh ankles have pitting edema, altho I had a tendency to that before,but more pronounced now, trouble sleeping through the night, awaken alot. more energy, hugely better disposition!!! (who wouldn't, n;o pain),  cramps in my hands, sometimes my ankles & feet.  good appetite!  Hope you continue to do well!  El
    • Elijo
      Elijo

      Posted

      Please excuse all of those typos...     El
    • pam7653
      pam7653 Elijo

      Posted

      I had trouble sleeping at night when I was at the high doses of 15mg for me. I spent most of the night going to the bathroom. I'm at 7.5 now and hope to be at 5mg in a couple weeks after my 2 surgeries. I can sleep the night with no problem. Probably better than ever.
    • Elijo
      Elijo pam7653

      Posted

      Great/  If I may ask, wha kind of susrgeries are you having?  But I don't want to pry.  I've been getting up 4 to 5 times a night to the bathroom, seem to have to go more often.It's a "trade-off".  I'm trying to exercise more, even walking is good.
    • pam7653
      pam7653 Elijo

      Posted

      I had foot surgery on my foot for plantar fasciitis last Monday. I had the same surgery two years ago on the other foot. This Friday the 4th I have a hysterectomy and rectocele surgery. The result of 4 pregnancies and hereditary traits with the rectocele. I'm dreading it. I've been down for 9 days now. I got in my Jeep today and headed into town. I couldn't stand it anymore. Stitches in my foot and all! I know this second surgery will be tougher. I'm not worried about it physically, but mentally. I'm not one to sit still and I'm not to do much for weeks. Just how many Hallmark Christmas movies can I watch?

      I'm looking at these surgeries as a new beginning at 62. I use to run a lot and haven't been able to. I still cycle and swim, I like to keep active. I'm hoping this summer I can run again. Not fast, but finish a 5k.

  • maid_mariane
    maid_mariane Elijo

    Posted

    Hi there

    I was diagnosed in September after a terrible summer. I was on 20 mg now tapering to 17.5 mg.

    many of us suffer from brain fog, insomnia, mood swings, and of course the pain.

    For me personally I know longer can spell and write yet prior i was critiquing and rewriting PHD and masters degrees works.

    I personally think your reduction from 40 to 30 mg is steep be careful. We really don't want to reduce more than 10%. Eileen who moderates may want to address this as well you just don't change your dose it's a gradual reduction or you will be in pain.

    do some reading on the dead slow method etc.

    good luck

    mariane

    • Elijo
      Elijo maid_mariane

      Posted

      Thank you Mariane!  I see my MD on the 9th. I'll talk to him about this.  You were diagnosed just a couple months before I was.  I don't seem to have brain fog and am funcioning quite well, better than before, because I too was having all kinds of pain from a 3 hr kayak (5 miles) ride in August, a terrible  fall in Spain Sept. 12 resulting in constant pain, plus several other terrible stresses.  So now I feel super! Insomnia, yes!

      Who is Eileen, the moderater of this site?  There is a lot I do not know about this forum, but so glad I'm involved with such knowledgeable caring people, and I will hopefully be learning more.  Where do I get info on the dead slow method?

      Elinor,  in Florida

    • susan91476
      susan91476 Elijo

      Posted

      I have also experienced weakness in my legs - but that is getting better, now that my prednisone dose has been reduced and I am now at 9 mg daily - starting at 40 in June.  My rheumy sent me to therapy and I have a whole sheath of strengthening exercises which I continue to do - along with walking every day (and I go as far as I can up to one mile).  However, I have traded my hair for my strengthening legs - I understand hair loss is fairly normal as you reduce the amount of the sterioid - And,l I would go with whatever Eileen says if she responds - she has a lot of insight and most everything I have seen her post, is spot on for me.  Good luck to you - PMR is not your friend
    • constance.de
      constance.de maid_mariane

      Posted

      Put the spelling checker on.  Mine is American, which is a beast - being a Brit myself, but it sure wakes you up and makes you re-read before you send your posts off.

      Look through the Forum and pick up ideas/help from other sufferers.  As others have said, take particular notice of EileenH's posts.

      Good luck and all the best for the future.  Not everyone suffers greatly, but take it easy, it's often a long haul.

      Constance

    • maid_mariane
      maid_mariane Elijo

      Posted

      2nd time typing this.

      We north American's have a site on groups yahoo if you want to join. In that site we have a list of several tapering methods. Right now I'm using one thst is 3 days faster than the dead slow just because it's easier to remember and at higher levels i didn't think i needed to be as concerned. This method is based out of north of toronto you could google rumi info prednisone tapering calendar and may find it. As for dead slow search this site it's been up several times or send me a personal email use the icon mail and I'll give you my email address and I'll send it to you.

      As for brain fog look at all the typos. Lol

      Just had someone in canada told to drop in a chunk like you and it went into GCA now on higher doses and now another disease with graver consequences. Any signs of problems get help. I know if 20mg. Or less you shouldn't reduce more than 10% at a time and you most definitely tapper not change. I'm tapering over 7 weeks and can feel the drop and i exercise daily.

      Great site take care

  • Oregonjohn-UK
    Oregonjohn-UK Elijo

    Posted

    Hi Elijo - The faintness was something I had in the early months when I first went onto BP meds, some 15 years ago, but the PMR meds 'upset the applecart' last year until it stabilised again on the lower BP dosage. 

    Two things I have learnt;  even if the Mr Freds have side effects they are better than the PMR symptoms.  Second - it's a long term thing and you have to live with Mr Fred and treat him as a 'friend' - maybe one we may not want on a permanent basis!  Good advice not to push it, my maxim is it like the Tortoise and the Hare - slow but sure will usually win.

    Best of luck reducing - Johnlol

    • Elijo
      Elijo Oregonjohn-UK

      Posted

      Thanks to you and maid marianne!  It's 6:15 and I have to go back to bed,didn't fall asleep until after 3AM, yesterday was up at 4:30 AM & suffered for it later.  I need my sleep!
    • maid_mariane
      maid_mariane Elijo

      Posted

      The other thing i do and some disagree is that i take a sleeping pill.

      I was an awful sleeper prior and took a mild sleeping pill that allowed me at least 4 hoyrs sleep. With pmr i got 1 hr here and there. My GP and i experimented with a variety till i found one that works and for me it has made a tremendous difference in my pmr pain,mood and energy.

      I still don't sleep through the night but the sleep i get is good.

      I also split my prednisone early morning between 5-6am and a very small dose at supper to pull me through.

      As John said you want to be the tortoise and an educated one when seeing your rumi. Alot of them just want you down as fast as possible and really don't understand the effects on you. Mine is working with me, i show her my charts and what i would like to do and we discuss to be on the same page, but you need to know your facts and reasoning.

      Mariane

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