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The Prednisone kills my life!

Posted , 11 users are following.

christophe38948
christophe38948

I was set on the Prednisone in February 2017. After 6 weeks on 15 mg/day I am going down and presently I take 4mg/day for months. During all these months my health was down significantly: stomach, abdomen, energy, lost appetite. I asked my doctor if I could changing doses for two or three weeks but she stated NO. Presently If I stay with the 1mg/day per month at the end, 27 January 2018 I will be in bed and without any life symptoms. Presently I walk from des to washroom to table for meal and to bed.

Do I have slowing down the doses for 1mg/day for 28 days?

Thanks for opinions.

Christopher

 

0 likes, 28 replies

28 Replies

  • Rimmy
    Rimmy christophe38948

    Posted

    Hi Christophe

    This all sounds very 'wrong' and if you can't convince your present doctor that this tapering is (I am thinking) too fast for you and you are very unwell then you should find another doctor who LISTENS. Unfortunately this is not an uncommon situation where the obsession to get people off Pred dominates everything else even the overall health and well-being of the 'patient'  There is also the problem of fatigue however which is part of PMR and not 'fixed' by the pred - but you should get some more helpful responses soon from 'experts' on this forum. 

    Best wishes

    Best wishes

  • constance.de
    constance.de christophe38948

    Posted

    Christopher, you need a  NEW doctor urgently.  It has taken me 5 1/2 years to get down to 4 mg Pred. Whatever is your doctor up to?  She obviously knows NOTHING about PMR.  Google PMR yourself - you will know more than she does!
  • Guest
    Guest christophe38948

    Posted

    Christophe, how did you feel, when you started with Pred? Do you think you suffer from side effects of the Pred or PMR symptoms?

    If you had improvement, was there a point you felt PMR symptoms are coming back? You went down pretty fast, from 15 to 4 mg in 8 months. 

    • christophe38948
      christophe38948 Guest

      Posted

      Hi Magy,

      Before Prednisone I was fully older energetic person but the pain in both shoulders was terrible day and night. The 1st Rheumatologist failed, she did not have idea what to do. The consulted Orthopedist suggested to cut the nerves in both shoulders to eliminate pain. I run out from his idea.

      The 2nd Rheumatologist was more experienced and fast diagnosis put me on Prednisone.

      During the time on medication my energy totally collapsed.

      Thanks for your response.

    • sherri74011
      sherri74011 christophe38948

      Posted

      I am definitely no expert, I was diagnosed with pmr in march 2017. I suffered with two frozen shoulders for months prior to my diagnosis, was in physical therapy for 6 months and received cortisone shots in my shoulders.

      I was also started on 15 mg in March 2017. I've gone through extreme fatigue but my pain decreased significantly throughout my body.

      I am fortunate that my doctor is not dictating my dosage, I have learned a lot by reading this forum.

      I have decreased very slowly and have currently been stuck on 10 mg for three months. I only tried to decrease to 9 mg once and immediately returned to 10 mg. I know I need to try and decrease again but finally the fatigue is under control and I am so afraid to lose this.

      Bottom line is you have decreased way too quickly in my opinion. The fatigue is a part of the journey unfortunately, there was a time when I would be out of breath going to the bathroom sad

    • christophe38948
      christophe38948 sherri74011

      Posted

      Hi Sherri,

      General luck of energy is clearly visible but I also found shortness of breath. I visited the Lung specialist and in number of tests he found that my lungs are OK, what does not help me when I go to washroom and later I am breathing like hipo.

      Regards,

    • EileenH
      EileenH christophe38948

      Posted

      The breathlessness in PMR has nothing to do with lung function - it is your muscles requiring more blood and oxygen supply.
    • sherri74011
      sherri74011 EileenH

      Posted

      Very interesting, my Dr sent me to a Cardiologist because he thought my symptoms related to heart disease. Overall My Heart Is Good after I had an angiogram and spent a fortune
    • EileenH
      EileenH sherri74011

      Posted

      It is nothing to do with gheart either - it is poor blood supply and possibly (I suspect) a mitochondrial problem. The mitochondria are the powerhouses of the cells...
    • Anhaga
      Anhaga sherri74011

      Posted

      Try the dead slow nearly stop taper plan, rather than trying to reduce your dose overnight, no matter how small the drop. You want your body to be happy with the new dose and that often requires stealth! Someone with a more flexible device could post the link, but you should be able to find it through the front page of this forum.
    • Anhaga
      Anhaga christophe38948

      Posted

      I would have run away, too! What a drastic remedy for an improperly diagnosed problem. Prednisone side effects are manageable and reversible. ☺
  • EileenH
    EileenH christophe38948

    Posted

    If what you have is PMR then you have been managed totally wrong. To have been taken from the starting dose to 4mg since February is pointless. Pred cures nothing in PMR, it manages the inflammation to allow you a reasonably normal quality of life until the autoimmune disorder that causes the symptoms we call PMR burns out and goes into remission - and that takes somewhere between 2 and 6 years for 75% of the people who develop PMR. And the other 25% do not get better faster - most of them take more than 6 years and 5% have PMR for life.

    A more normal reduction would be to stay at the starting dose for 6 weeks, reduce to 12.5mg for another 6 weeks and then to 10mg. One expert keeps his patients at 10mg for a year. From 10mg the reduction is usually 1mg per month. Even this is too fast for some people although the doctor found that the flare rate with this was 1 in 5 patients.

    You will find links for a lot of reading here:

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    I think it is extremely unlikely that it is the prednisone that is killing your life - it is the fact you are not an adequate dose to manage the inflammation. I had PMR for 5 years without treatment and I managed to a lot more than you say you are doing at the moment - once you start to move gently in the mornings you can manage to do more and the movement improves the pain and stiffness. Some people find that using an electric blanket BEFORE getting up allows them to move to get into the shower where they can do gentle stretches which improves the mobility. Aquafit helped me a lot, I had to start gently and build up slowly but once I had done a class the rest of the day was much better, The pain was always there but when you are actually doing something you notice it less.

    What country are you in?  

    • christophe38948
      christophe38948 EileenH

      Posted

      Hi,

      Thank you for your suggestions. I am in "bloody" Canada.

      After presenting my case on the Web I am more confused then before. I will talk to my rheumatologist and will discuss suggestions of my correspondents.

      By.

  • snapperblue
    snapperblue christophe38948

    Posted

    I think more information would help because this does not sound like a typical response to prednisone.  

    What was the shoulder pain like- what time of day? triggered by movement? exactly where?  

    When you went on prednisone, did the pain go away very quickly?

    Has the pain returned as you reduced the dose of prednisone?

    Did you have the fatigue before you started prednisone?

    How long had you had the pain before you went on prednisone?

    Your story is not one we usually hear on this forum, so more detail may help. I certainly never heard that any doctor suggested cutting the nerves to alleviate PMR pain, but I guess there is always a first time!

     

    • christophe38948
      christophe38948 snapperblue

      Posted

      Hi,

      1/ Pain was 24/7

      2/ Within 3-4 days pain was gone

      3/ When going down with Pred not pain return

      4/ I was fully energetic Old Man

      5/More than six months

      Thank you for your response.

      Regards,

      CW

    • Anhaga
      Anhaga snapperblue

      Posted

      I read the post about nerve cutting as a suggestion to deal with pain whose cause had not been properly diagnosed, not as a treatment for PMR.
    • christophe38948
      christophe38948 Anhaga

      Posted

      Hi,

      It is possible but both doctors were not diagnosed as the PMR. By!

    • snapperblue
      snapperblue christophe38948

      Posted

      Always with the proviso that "I am not a doctor..."

      1. PMR pain is typically worst in the morning and gets better with activity during the day.  It occurs with movement, not all the time. Getting out of bed entails yelping with the pain (at least in me) and stiffness (walking in the Godzilla stomp.)  After a few hours, much of this was gone for me, but recurred (to a lesser degree) if I sat or lay down for any length of time. It certainly does not typically occur 24/7, at least at the same intensity.

      2.  PMR responds to prednisone quickly- at 15 mg, 3 or 4 days sounds right.

      3.  PMR is extremely variable, so anything can happen in terms of how long it takes for people to decrease prednisone. However, few people can reduce to 4 mg in 7 months!  

      4.  Fatigue is usually a symptom of PMR- and a severe and serious symptom.  If you did not have this before prednisone, it makes me wonder whether you have PMR at all.  However, as I said, PMR is variable and almost any combination of the typical symptoms may be present or absent. Prednisone often does not relieve fatigue in people with PMR, but the PMR is what is causing it.

      It is difficult to describe the kind of pain we experience.  When I said I'd never heard of a doctor suggesting cutting nerves to relieve PMR pain, I meant that the way your doctors understand your pain may suggest to them it is something different. PMR is not that intractable, so if that is suspected you would not go for such a drastic solution. 

      Also, I am not expert on prednisone side effects, but most people are more at risk of gaining weight than losing it. If prednisone is irritating your stomach, there are coated versions and also a medication called Omeprazole (in the US). If the prednisone is making you so sick and miserable, there are other treatments for PMR.

      So I have no idea what is going on with you.  Your total and speedy response to prednisone sounds like you have PMR, but much of your story does not sound typical.  

      I am sorry you have been having such a rough time.  Good luck in finding better help!  Snap

       

    • christophe38948
      christophe38948 snapperblue

      Posted

      Hi,

      My pain was continuously 24/7, day and night with the same strength..Each body movement was with the extremely strong pain. No possibility of showers and any dressing at all.

      The 1st rheumatologist suggested that I have to go on steroids but at that time I was for long time on antibiotics and I have to wait until I finish my treatment. This is the reason that I was waiting so long to start Pred. Later was Urine & Blood tests and x-rays of my whole vertebra and then was consultation with the Orthopedist.

      After taking the Pred for 3-4 days my pain stopped and never returned, so far.

      Thank you.

      Regards,

      CW

    • Anhaga
      Anhaga snapperblue

      Posted

      Snapperblue, I was not aware of unusual fatigue with PMR, only really encountering it when pred reduced to 7 mg, so I question fatigue as one of the definitive symptoms of untreated PMR and lack of it a reason to doubt the diagnosis.
    • snapperblue
      snapperblue Anhaga

      Posted

      I did not mean to question the diagnosis based just on the lack of fatigue. As I said more than once, PMR is variable and not everyone has every symptom.  I raised it only because it seemed unusual that there would be NO fatigue when the pain occurred, but debilitating fatigue after prednisone started.  

      Perhaps I am wrong, but I thought that the many people on this forum who have severe fatigue had it because prednisone does not relieve that symptom, not because prednisone causes fatigue.  

    • Michdonn
      Michdonn christophe38948

      Posted

      Christopher, each individual case is different as we all are different. Whst was the last dosage at which you were comfortable? I would go back to that dosage. I would tell the Rheumy again thing to get the Pred and be looking for another doctor. Once you are stable, start on the DSNS taper

      method. Good luck with the rest of your PMR journey, think positive, things will get better. Try to smile. Smiling 🙂

    • Anhaga
      Anhaga snapperblue

      Posted

      Really just trying to clarify your wording. Many people do feel fatigue, but not all. I think the only universal symptom is pain, and even at that we experience different patterns and degrees of pain. Some perceive stiffness more than pain as such, others are in agony. No wonder doctors get confused by us! But I must say Christophe's doctors appear to have been particularly clumsy. Fancy suggesting cutting nerves to important body parts when you don't even know what's wrong! 😨

    • Michdonn
      Michdonn Anhaga

      Posted

      Since having PMR I have lost sooo much confidence in doctors, I do know if it is just the Rheumy, but some of them do not have a clue!
    • EileenH
      EileenH snapperblue

      Posted

      Snapperblue:  It's both - autoimmune disorders commonly cause fatigue and fatigue is also listed as a possible side effect of pred although it isn't that common. But of course - fatigue that INCREASES when you get below about 8-10mg pred could be due to poor adrenal function.

    • Anhaga
      Anhaga Michdonn

      Posted

      My current GP is mostly good, but the best experience I've had has been with a locum who herself has multiple sclerosis and in fact even encouraged me take a higher dose of pred than I was willing to! Almost too much of a good thing. 😉

    • Michdonn
      Michdonn Anhaga

      Posted

      Yes Anhaga, but to have the availability of too much Pred than not enough; which was the case I found myself in last spring. But here to complain about it so that is really what counts. Smile on my face think positive! 🙂

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