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Hope and a sincere Thank You

Posted , 12 users are following.

pparker1213
pparker1213

3 years ago I started down this strange road of PMR. It took the Dr's a few months to give it a name. I tell people that I believe PMR stands for " we have no idea what is causing this but we are going to call it PMR". But in August they prescribed 20 mg of Prednisone and I woke up the next morning feeling like a new man. I called it a miracle drug at that time. Over time when the side effects started to show I started to wonder about the "miracle" part of that.

In time my research led me to this forum and I believe, the knowledge and support to survive this confusing illness. Reading the posts of people who were struggling far worse than I was made me feel fortunate at times. Other times I felt bad for myself or frustrated or depresssed. I could not determine if things happening to me were side effects of the drug or life events.

I adopted the "dead slow" method of Prednisone reduction and I firmly adhered to taking as much prednisone as I needed to be pain free. It took me three separate attempts to get below 7.5mg. 5 mg was another tough one. A heart attack in April of 2016 pushed my focus to  another area. Luckily it was not a bad diagnosis and is being treated with medication. I started walking more and a bad hip flared up. I am looking at a hip replacement this summer.

Today I am on day 4 of no prednisone and tomorrow a .5mg pill. I can see the end of the tunnel. I don't feel like I  did 5 years ago when I get up in the morning but I doubt any of us do. I have aches and pains but I feel lucky.

So thank you to all  and never give up. The quote I read here this morning is going on my wall - "The devil whispered in my ear, "you are not strong enough to withstand the storm". Today I whispered in the devil's ear, "I am the storm".

Dave 

2 likes, 15 replies

15 Replies

  • barbara73592
    barbara73592 pparker1213

    Posted

    Thanks  for your post Dave. Cheered me up. Like you I am so glad I found this forum,it has helped so much knowing and hearing other sufferers take on PMR.

    I laughed at the bit where you said when you were on 20mg you felt like a new man.

    I too thought  too (only I am a woman) until the awful side effects kicked in. However

    I have tapered to 8mg after a flare a few weeks ago where I had to go back to 10mg for a while,so as you say it is a slow process,but hey,we will press on regardless.

    Barbara

    Best Wishes,

    Barbara

  • bob73443
    bob73443 pparker1213

    Posted

    Wonderful and encouraging message.  I especially like your last sentence!  All the best.
  • phillip11645
    phillip11645 pparker1213

    Posted

    Congrats Dave, I gather you were able to achieve the reduction without the use of Methotrexate and/or any other drugs that many doctors have recommended then?
    • pparker1213
      pparker1213 phillip11645

      Posted

      I was pointed to methotrexate by my rheumatologist when I struggled to get below 7.5 mg. A friend of a friend had a very bad experience with it so I declined. My Dr. actually listened to me when I told her about this forum and the reduction plan I had adopted. Sometimes you have to be your own advocate. Like I said, I doubt highly I would be where I am today if I had not found this forum.
  • mary_49929
    mary_49929 pparker1213

    Posted

    Hi Dave,

    You have given me hope... I 've had the most dreadful couple of days reducing to ten..but have taken the plunge and, for the first time gone back up to twelve.. I see my consultant on Tuesday, which will help, as only had this since Sept..... a roller coaster of a ride , so unexpected, and have to deal with big loss of sight in left eye, and little loss of sight in right eye. Told last week glucoma has now happened!! But there's light at the end of the tunnel, so keep going everyone, and thank you for reading this.... been a real down day, and its hard to explain how this makes a person feel on a bad day ...xx

    • EileenH
      EileenH mary_49929

      Posted

      Always better to abandon a reduction than struggle - it's better than letting in a flare and having to go a long way back up.

      Hope you feel better tomorrow.

  • Jan20533
    Jan20533 pparker1213

    Posted

    Dear Mr Storm

    I loved ready your post, thanks for sharing.  I am still at the 'miracle' stage with relatively quick diagnosis (after 2 months of suffering), now in my 7th week of Preds at 15mg.  I'm starting to panic from reading various posts that side effects start kicking in!  When did yours start Dave and what should I expect?  I'm 55 and relatively fit.

    many thanks

    Jan

     

    • EileenH
      EileenH Jan20533

      Posted

      There are 82+ listed side effects. No-one gets them all, many people get next to none. And most of them can be managed well if you go about it right!

      The first place to start maybe is diet - cut the carbs and you will help reduce the risk of weight gain which many people do suffer. But it is possible to lose weight while on pred - plenty of us have.

      But don't assume there will be side effects - I have next to none.

    • pparker1213
      pparker1213 Jan20533

      Posted

      Jan,

      I was 57 when I was diagnosed and I was in pretty decent shape. The side effects started probably 4 months or so in.Initially it was night sweats, then dry mouth, then 5 or 6 trips to the bathroom at night. The biggest issue was trying to determine if there was something else wrong or was I just dealing with prednisone side effects.  I was fortunate and never gained a large amount of weight as I heard others have dealt with. But  around the same time I became lactose intolerant so had to give up all my favorite foods like ice cream, pizza, etc. Probably helped with the weight issue. 

      Don't panic . All of them ran there course.

      Once I found this forum and read many many posts, I convinced myself I would try to lower my prdenisone when I could, but I would maintain a quality of life as pain free as possible. I did not treat it as a race to zero.

      Listen to the "pros" in this group. I am just a student. 

  • gina30088
    gina30088 pparker1213

    Posted

    Hi Dave

    So glad you found the same strength I did in that quote.

    Isnt it miraculous how things can reach out to people just at the right time.

    Have to love the serendipity of it all

    Sounds like you have had quite a time of it. I hope each day is better or if not better

    still enables you to enjoy life. And i do think sometimes it just can be normal aches and pains, but I can see it would be alarming . Before this happened it seemed quite often a new pain or rash or odd thing would happen, seemed to start at 60😏 My husband and I would always be saying. What the hell is that!  Gotta laugh.

    I too ,have found such knowledge and positive inspiration , on this amazing site.

    being a newbie to this all .

    Everything has been right on , or leads me to ask the right questions when I read the forum from  these generous experienced  people, (though I wish each and everyone hadnt had to become experienced because of this .)

    When I decreased from 60 to 20 / 20 the next day per orders, as was gently predicted here ,it was not good so back to 40 mg at once in am . I think though it did force me to finally accept this as real, and as Eileen said its not about getting off quick, just cuz fear side effects.. its about listening to your body, go slowly, and save those spoons!

    Wish you the best Dave and to all fellow warriors

    Gina

     

  • Jon--US
    Jon--US pparker1213

    Posted

    Dave, thanks for your post. I agree that this is a great forum! It helped me immensely with self diagnosis before I could get in to see a rheumatologist. Best of luck to you.

  • Mrs_Hobbles
    Mrs_Hobbles pparker1213

    Posted

    Dave, I love the quote and might also use it, if you don't mind? You've come a long way through all your adversities and I'm delighted you've managed to get where you are despite them. Wishing you continued success with your reduction and your health in the future including your hip replacement! Take care x

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