Prednisone Withdrawal Symptoms Worse Than The Actual Side Effects?

fullsizerenderHere I go again. I have lost count of how many times I tried to wean myself from Prednisone. I am on this drug now for 10 years, 8 months and 23 days, and I tried to come off of it multiple times, all with disastrous results. I was being kept on a maintenance dose of 5mg because it was determined that my adrenals were not kicking back on to produce prednisone on my own.
Last year I had a bone density scan and I now have osteoporosis in the lumbar spine. Then I developed extreme pain in my right hip, a symptom of another side effect of prednisone called hip necrosis, where the hip-joint literally dies. Thankfully it was just a case of bursitis and was easily remedied.
Those two things were a wake up call for me to get off of this drug, so I told my doctor that I am coming off, and much to his apprehension, he agreed, so long as we did it slowly. Last time we did it by reducing 1/2mg every two weeks. By the time I got down to 4mg, I was a mess. I was in complete body pain, nausea and a whole bunch of other symptoms, so we went back to ten.
Again, back on ten I felt fine and then we tapered down to 5mg, and kept it there.
Now we are trying a different approach. This time we are dropping one whole mg every three months. In November I dropped from 5mg to 4mg, and I have to admit, it was tough. I started with joint and tendon pain in my shoulders, then my elbows, and knees. My right hip was painful again, and I developed arthritic symptoms in my hands. As a chef, painful hand joints when you need to be chopping all day can be stressful. I also developed cluster headaches, the worst kind of headache at least once a week.
I can only say that I am thankful that I have a very high pain tolerance because my doctor told me that the symptoms I describe are not tolerated by anyone else he deals with. Everyone would have quit the weaning by now. In the three months I took Tylenol once.
I want to get off the drug, so I pushed through the pain and finally, within this last week, all the pain has subsided by about 75%, just in time to go down to 3mg in the middle of the month. I don’t know if all the symptoms will return again but I know what to expect. I believe that my adrenals will kick in and all this pain and discomfort would be well worth the trials to get off this drug that cures everything and causes everything.

Written by Basil Rene

I maintain two separate blogs. One is LifeAsAnAnomaly.com where I discuss my life with sarcoidosis and the other is AChefTalksFood.blog, where as the name implies, I talk about food.

3 comments

  1. Hi Basil,
    I’m really curious. Now that you have the pain down to a tolerable level, why not just reduce the prednisone by 1/2mg this time to see if you can recover faster than reducing a whole mg dose down? Are you having mood swings with the reduction of prednisone? Hang in there! I’m here cheering you on!!! Go Basil Go!
    …Christine

    Liked by 1 person

    1. Hi Christine. I think doing 1/2mg every month versus doing it 1mg every three months for some reason a bit easier with the the 1mg. Although I had muscle and tendon pain and severe headaches, I really did not get that “sick” feeling as with just 1/2. With the “sick” feeling, it was difficult to function. I was also always tired with just dropping 1/2 mg. I did not get that always tired feeling with 1 mg. As for the mood swings, yes, severe, but only for the first two weeks, then it tapered off by the third week, and by the fourth week I was just my usual brand of crazy. Thanks for the support. Getting off the pred is a lot harder for me than being on it, but it will be worth it in the end.

      Like

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