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New to this "journey"!

Posted , 16 users are following.

lynda62707
lynda62707

I'm not sure anyone will be reading this as apparently this forum has closed. So, I'm gonna try and reopen it as I'm in need of some folks to.talk.with! The truth of the matter is I've been on another site 4 apprx. 4 weeks and it finally clicked that all the people were in the UK, which is fine except there were a few terminology barriers that started to get a bit annoying (sorry, but it's true)! Also, I don't think my sense of humor translated well😠😱. Anyway, short hand story, was dx'sd w/pmr about 6/7 weeks ago and my life has been on a rollercoaster ever since. Was put on 15mg prednisone ( which I fought tooth&nail over) as I wanted no part of steroids! Tried 2 taper off WAY TO FAST and WAY TO MUCH and consequently got Very messed up! There's much more to this story, but that's the bottom line. Currently I'm back up to 14.5mg. and will be for at least the next month. In all fairness it has definitely helped my joint pain, but I'm not liking the side effects at all! If this post reaches anyone, please respond....I could use some friends who are familiar with this whole CRAZY thing!

0 likes, 37 replies

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  • MariGrace
    MariGrace lynda62707

    Posted

    Lynda, I am not the best qualified to respond, but wanted to let you know you are not alone.

    My journey - quickly- 70 years old, PMR for 17 months.. lots of difficult issues over the months to navigate.

    Have learned to embrace Prednisone. Without it there is no moving.

    Started at 20, went to 60, have slowly reduced to 10 and will be here a long while if I don't go up.

    PMR is my 3rd autoimmune disease.

    You will read such good advice, here. This list is a blessing.

    Told my doctor today I want to toss all the meds and quit.

    He was so kind. Until he scheduled another EGD and colonoscopy. Great.

    I did not smile, until I told him I cut the meds he has me on .. in half. He was glad I didn't toss them. I have to go within 2 months. I told him I will come in one month and 31 days. biggrin

    Grinning and fighting ...

    MariGrace ( a tad bit feisty)

    Hoping you find answers and hope.

    * A good therapy during a chronic illness is writing. Consider keeping a journal and write out your feelings, grief, etc. Writing can help one cope.

    • lynda62707
      lynda62707 MariGrace

      Posted

      Thanks 4 your quick response! It's sooo appreciated! I hope 2 keep posting and hearing from folks in the same boat as I! Btw....I'm 67 and live in California (just in case u were curious😊wink. Hope 2 be "talking 2 you soon! Going on my 1st vacation in over a decade to see my daughter and my grandson for 1st time! Super excited, but very anxious as well! Will be flying with my service dog (his 1st time on plane) and portable oxygen!! Oughta be a real "adventure"!

  • Bethune
    Bethune lynda62707

    Posted

    I’ve been on Prednisone for 8 years for PMR.  Was diagnosed at @ 60.  I’ve accepted that Im dependent on prednisone , and it has saved my quality of life.  I’ve been off completely a couple of times, but unfortunately flare ups forced me back on.  Presently

    Im at 13 1/2 and moving down very slowly.  I live in Virginia, and have tried 5 other DMARDS  or Biologics.  None worked or the side effects were intolerable.  My best option is living with prednisone.  

    Good luck to you... it’s definitely an up and down journey..  

  • Michdonn
    Michdonn lynda62707

    Posted

    Lynda, I live Los Alamos NM, a little over two years on my PMR journey. Started on 20 mg of Pred was rushing my taper and ended up taking 30 mg to get relief. Now I am one of the most conservative tapers and will continue to take Pred so I can have a normal PMR pain free life. Good luck on your journey, try to stay active, positive and smile, it helps. ☺️
  • darlene36688
    darlene36688 lynda62707

    Posted

    Hello Lynda,

    I live in South Carolina.

    I was dx with GCA & PMR 13 month's ago. I also have Sjogren's Syndrom.

    Upon my diagnosis, I was put on 60mg. of Prednisone. A month later my rhummy reduced it to 40, then 20, then 15, back up to 20, down to 15, down to 10 & last week down to 7.5mg.

    I also hated the side effects of prednisone but decided it was worth it.

    I am on the Actemra infusion once a month. My inflammation has gone down to zero with the infusion.

    My rhummy said I will be on the infusion for an indefinite time. He is very pleased. I've been getting infusions for 6 or 7 months.

    My GCA headaches were so severe I finally found a wonderful neurologist. She dx me with occipital neuralgia. I get nerve block injections every 2 weeks and they have helped a lot. 

     

    • lynda62707
      lynda62707 darlene36688

      Posted

      Hey everyone!! You guys are all so AWESOME! So many responses in a relatively short period of time. Thank you, thank you, thank you! I'm finally starting to feel connected. Besides having been recently dx. w/pmr, I also have Crohn's disease, and a paralyzed rgt diaphragm which makes it very difficult to do anything strenuous (walk upstairs, any housework, etc.) The "broken" diaphragm is a result of a medical procedure gone wrong, and unfortunately has changed my life forever. It's very difficult to breathe

      (especially after any kind of exertion), and needles to say, things get depressing sometimes! Anyway, enough wallowing....tomorrow I'm going on a LONG OVERDUE VACATION to visit my daughter in Texas. Haven't seen her in 6 months and I now have a new grandson I've never met! I'm sooo excited, but I'd be lying if I didn't say I was VERY anxious as well! Navigating around the airport with my service dog and portable oxygen should be a real "Trip"! Please wish me luck.

    • margaret22251
      margaret22251 lynda62707

      Posted

      Morning Lynda. From a bleak morning in Heckmondwike England . How a great vacation and look upon steroids as a friend, I have had pmr for nearly five years now and at first like you I was terrified, but I found friends on this forum and they listen to you.

      so just take advice that is given as no one will steer you in the wrong direction AND listen to Eileen she's the best. Go enjoy your grandson and the staff at the airport will help you.

      so smile your alive.

       

    • lynda62707
      lynda62707 margaret22251

      Posted

      Hi to you too! Lol...I rather like bleak mornings ( if what you mean is overcast or foggy). I'm definitely aa Autumn/winter type of gal! Unfortunately, as much as I love California, it's just too hot and sunny for me! Oh well...question?... Have you gained any weight since being on prednisone? I've gained 6lbs in 6weeks, and that scsres the b-jeebers out of me! And even though my daughter and neighbors say they can't tell, I definitely see a "Moonface"! Ughhh

    • charles2523
      charles2523 lynda62707

      Posted

      Have a nice vacation. Relax and don't fret over the pred side affects. Not being in pmr pain is the payoff. Enjoy that new grand baby and family.

    • margaret22251
      margaret22251 lynda62707

      Posted

      Hi yes I put on three stones , but over the years have lost some, the last weight loss was three months ago when I list seven and half pounds it took three months to loose but I was well pleased when the nurse told me.

      my doctor just says to me keep doing what ever you do slow is best.

      i never got the moonface so I was lucky there.

      have a great vaction

       

  • MhairiP
    MhairiP lynda62707

    Posted

    It's perhaps a bit late now, but if you let the airline know you need assistance, they'll make sure you're taken from A to B,  get priority boarding etc. 

    Hope you have a great vacation with your new grandson!

    • lynda62707
      lynda62707 MhairiP

      Posted

      Thank you 4 the good wishes! Yes, I've already advised the airlines of my issue. I guess it just takes a little bit of faith to count on things going well!

  • celia14153
    celia14153 lynda62707

    Posted

    There’s nothing like joy to help,the medicine go down! The miracle of your grandson and the reunion with your daughter will get those endorphins going! Have a wonderful time and bless Pred for its  help 😀

    • lynda62707
      lynda62707 celia14153

      Posted

      Thank you! It's 315am and I'm getting ready to go to the airport😱.

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