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roxanne34010

Is there such a thing as Prednisone withdrawal?

Diagnosed with PMR and started taking Prednisone in April of 2017. Started at 15 mg and decreased gradually and stopped taking it June 27. On July 6, I started having diarrhea, stomach cramps, chills, nausea and complete loss of appetite. Talked to a triage nurse today who says it sounds like a viral thing and I should start feeling better in a day or two. I cannot remember the last time I had a virus and I'm 81 years old. Could it possibly be Prednisone withdrawal?

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  • roxanne34010

    I agree with Daniel.  As the action of the prednisone is to suppress the immune system I wonder if that is ongoing and might make a mild stomach upset slightly worse in those who have recently ceased taking prednisone?

  • roxanne34010

    https://www.mayoclinic.org/diseases-conditions/addisons-disease/symptoms-causes/syc-20350293

    This is a description of adrenal crisis symptoms - and I'd say what you have mentioned fits so it shouldn't be dismissed as a virus until they have done some tests.

    They are all related to a lack of the natural corticosteroid, cortisol, to replace the pred your body has been using before. This isn't steroid withdrawal in the sense that the PMR is flaring or you dropped too much at one go. You have reduced to zero quite quickly really - perhaps you would have been better taking a bit longer over the last 5mg.

    You need to seek a better medical opinion - someone who knows what an adrenal crisis is because that nurse probably hasn't a clue. If you were in the UK I'd say call 999, paramedics would recognise the possibility. Not sure if yours in the USA would.

    • EileenH

      Thank you for your advice.My rheumy is at Johns Hopkins and he really seems to understand PMR. My readings have been good since November of 2017 as I decreased. I am going to contact him to see if he will order some tests. I went to four doctors at Penn State/Hershey and none of them diagnosed PMR. I go to Johns Hopkins because I have Sjogren's Syndrome and my rheumy immediately diagnosed PMR.

      I'll let you know when I find out more.

  • roxanne34010

    Roxanne,

    i would definitely see your doctor and get a full exam. Two reasons: Your prednisone drop seems really fast for the usual PMR case and at 81 some disorders present differently than in younger folk. An example: urinary tract infections and pneumonias mask as "viruses". If you indeed have an infection somewhere and your body is stressed steroids are resumed because for a year or so after steroids are stopped the adrenal glands might not be able to pump up your own cortisol to carry you through and you can get an adrenal crisis. 

    • karenjaninaz

      I am going to take Eileen's advice and have my rheumy order further tests. I went to an urgent care center on Saturday and the doctor asked for a urine sample. She saw some white cells so sent it for a culture. In the meantime, she put me on an antibiotic. I'm waiting for the results.

    • roxanne34010

      Really - since you have recently stopped a very long term course of pred the symptoms you are showing should prompt thoughts of poor adrenal function ahead of any other concerns. Sort that if necessary - and then you can look at other possible problems. 

    • EileenH

      My rheumy doesn't think it is poor adrenal function because I was on such a low dose--started at 15 and only had to go up one time early on. Today, he emailed and said if they can't find anything else, he would put me on on a low dose.

      I still feel awful today and managed to get an appointment with a primary physician--one I've never seen before. What should I suggest to her?

    • roxanne34010

      Tell her everything you've told us, and emphasize the fact that you discontinued pred recently.  How long had you been on the lowest dose and did you drop overnight or taper off? 

      It helps to write things down so you don't forget anything important.  I find it's very easy to get a bit side tracked or to forget something in these situations.  

      Hope you feel better soon and get some satisfactory treatment.

    • roxanne34010

      That is quite high enough a dose to send the adrenals into hibernation - and in some people they take a long time to wake up. Everyone is different so he can't assume the rate you reduced was slow enough to allow return of adrenal function in a timely manner. I have had rheumies tell me it is exceedingly rare - on the forums I know of at least half a dozen people who have proven almost total lack of adrenal function post-pred out of a total population of maybe a few thousand. It isn't as rare as they think. I'm not suggesting this is a permanent state of affairs - just that maybe the rate of reduction was a bit fast for you. Even after stopping pred apparently successfully it is felt by endocrinology experts to take up to a year for the body to recover fully - and any stress, infection, trauma or emotional, has the potential to cause a problem.

      As Anhaga says, tell the doctor what you have told us and try to write down in advance how long you were on pred and approximate doses. And say you are aware that the symptoms you have are typical of adrenal insufficiency/crisis. You may have a UTI - and that could be enough to push you into insufficiency territory.

    • EileenH

      I could not get an appointment with my primary physician and ended up seeing a nurse practioner. When I mentioned PMR, she had no idea what I was talking about. I felt like walking out the door but stayed. She thinks it's viral but did order some blood work to see if it's an infection. I am very dehydrated so am trying to drink more.

      I do have a complete record of my doses of Prednisone. I think it was all a very good taper until I got down to 1mg and then I quit. Probably should have decreased some more but was very happy to be done with Prednisone.

      Still haven't found out about the UTI but should know tomorrow for sure and should have the blood work results tomorrow.

    • roxanne34010

      Roxanne, I hope you get the help you need sooner rather than later.  I had a lesson in how important 1 mg, even .5, can be last year when I attempted, with doctor's encouragement, to taper down from 1.5 to zero in .5 mg steps.  In the end I had a flare, my only real flare in the two years as it was then, and eventually had to go up to 7 to get things under control again.  It took months for me to get back to 2 mg, and I'm going to be exceedingly cautious about trying to taper this time.  Last year I felt very well on 2, pretty well when on 1.5, but attempts to get to 1 made everything go pear shaped!  My doctor has been pretty smart, except for this unfortunate incident when she didn't renew my prescription and told me to use up remaining tablets then stop and see what happened! eekrolleyes I had been feeling so well I thought I might really be in remission.  I feel that way again now, but it could be another illusion.  My doctor did say really early on that her patients often keep a supply of 1 mg tablets on hand in case they need an occasional dose.  And eventually, I suppose, they no longer need these little top ups.  I now recognize it's not just to deal with PMR niggles but also the effects of sluggish adrenal glands.  They may be producing enough cortisol for day to day activity but even a little extra stress, pleasant or otherwise, can be enough to cause a crash because they still aren't up to the task of responding to the additional need.

      All the best. ❤

    • Anhaga

      My rheumy is 80 miles away and has been wonderful about emailing me. The care I've received in my local area has been awful. I'm still waiting for the results of a urine test from Saturday and waiting to hear what the nurse practioner has to say about my blood work. In the meantime, I feel better for a while and then diarrhea starts again.

    • roxanne34010

      It probably means that they have done a culture and after a few days they can see that there are bacteria present in the sample (there shouldn't be really). What they can't yet tell is WHAT bacteria they are and which antibiotics are likely to have the best effect. The longer they can grow them - the more accurate the result.

    • roxanne34010

      Microorganisms associated with urinary tract infection are mostly E. Coli but others cannot be ruled out. We do have good bacteria which is fine but I assume they are saying your urine samples are positive. 

    • EileenH

      There seem to be two different kinds of bacteria. Of course, they haven't told me what kind. They are waiting for a 4th result. In the meantime, they prescribe Bactron and fortunatly before I started taking it, I found it has sulfa which I am allergic to. Waiting for another prescription. Finally got an appointment with someone in my PCP's practice (of course my PCP is on vacation). I go tomorrow to see him and hope to find out more.

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