Pred and adrenal glands | Arthritis Information

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I've been on pred for the past 8 mo.  going from 7.5 down to 2.5.  I started getting nausea and headache and then a terrible weakness in my legs.  I went to the dr. twice.  I questioned him about my adrenal glands maybe not making cortisol and he said since I was adding pred that was not possible.  Went back to him complaining about the awful weakness and so he ordered blood tests and sure enough - my cortisol was 7.9 and normal is 8.7 So anyway, he told me to stay on the 2.5 and not to reduce it anymore.  My pain was much better but my sed rate 29.  So I'm still dealing with the weakness but want you all to know that the adrenal glands don't automatically start working when you reduce the pred.

 
Jule
The longer you have been on pred, the longer it usually takes to taper off.  I've been on it for 3 years (started at 60 mg) and can't get below 2.5.  It can take several months to a year or longer for your adrenal glands to produce enough cortisol.  Some people wind up having to take pred for life.  Sed rate of less than 30 is normal for women (if the test was done by Modified Westergren).  Other tests of sed rate may differ slightly.  You can have a normal sed rate and still be in pain though. 
 
Symptoms of too rapid tapering of prednisone include headache, dizziness, fainting, fatigue, lethargy, muscle pain, joint pain, shortness of breath, low blood pressure, nausea, vomiting, anorexia, weight loss, fever, and low blood sugar. 
 
As you can see, many symptoms of withdrawal are also symptoms of PMR, so it is difficult to tell what is really happening to your body; the withdrawal or the PMR. 
 
Nancy
 
 
Hi
    Wow, I'm so glad I came to read the messages this morning.  I had asked my rheumi why my legs were so weak but she didn't seemed to be to worried about it.  I am now down to 1 mg and 2 the other days and hope next week to go down to 1 for the next 3 weeks and then stop.  It has been a very hard trek down, but I want to see if the pred is what gave me diabetes.  My rheumi has now put me on Lyrica.  In Feb. my sed rate was 83 and when I had it done again in June it had gone down to 53, so I figured now was the time to get off these terrible pills.  The side effects have been bad.  I have IBS and emphesema and coming down have increased the problems with both.  My legs get very shaky at times but I always thought it was me.  They (doctors) told me the small amount I was on now that my adrenal gland was awake.  The next blood test I have taken I will tell them I want them to test for the adrenal gland.  Thanks both of you.  I thought it was in my head.
Anna
Hi Teeger,

  I see a rheumy, but also see a GP who is a little alternate, looking for other reasons for our body breakdown.  He checked my iodine levels and found that i was severely iodine deficient.  As I have had high blood pressure since i was 33 (now 57), i gave up salt then. I have rarely eaten processed or canned food, and never cooked with salt.  The cardiologist back then , said NO SALT. So i did as told !!!!

The GP started me on daily kelp, for the iodine, and said that I could not produce cortisol without  iodine!

So much to learn , and we really do need to pool all our info and then consult our doctors , who hopefully understand the science of all this .     Love Zali   Hi Anna,
 
Two months ago, I wrote this as answer to a post: Your tapering was probably too fast. I started on 20 mg and tapered 2.5 mg every three weeks down to 10 mg. then 1 mg lessevery month until 5 mg. From there on it is 0.5 mg every month. Sometimes you may have a flare-up and then you must go back up again. Below you can see what I found on http://www.fpnotebook.com/Rheum/Diffuse/PlymylgRhmtc.htm 5 Course Initial: Maintain starting dose for 1 month First steroid taper (depends on clinical response) Taper by 2.5 mg per month down...
 
When I taper, i use the new dose one day, the old two days and repeat it once more. Then the new dose for two days and the old dose for one day and repeat it once. I am now down to 0.6 mg (1/4 of 2.5 mg) and will probably drag the period out even more because the percentage you drop under 5 mg is very high, For instance if you taper from 2 mg to 1 you only get half the dose, which usually is too fast.
 
I have learnt to live with Pred (started on 20 mg in June 2005 and have had some flare-ups) and havenĀ“t had too many bad side effects, so I am really glad to avoid the worst pain by taking Pred.
 
Good luck
 
Ragnar

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