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Thread: How long can you be on 60mg prednisone and can you go back up from 50?

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    Default How long can you be on 60mg prednisone and can you go back up from 50?

    2+ months ago my daughter(19) had significant hearing loss and cough and then some indicator of disease activity in lungs on CT scan. Labs were fine, but they finally figured out this is a relapse 6-7 weeks ago(diagnosed 3 years ago with major kidney and some sinus and some lung and has been doing RTX as maintenance). 60mg prednisone, which started 4 weeks before 4 weekly RTX infusions, brought her hearing up quite a lot. After 2 RTX and after dropping from 55 and then 50 her hearing has dropped (verified by hearing test) and she thinks has dropped more since Monday when they did the test.

    The doctor via nurse said RTX takes 4-6 weeks for full effect and to wait to taper more until a week after last RTX (so April 19th). We are wondering if she should go back to 60. How long can you be on 60? We are going to try to get the doctor to call us tomorrow to ask him this. Thus far we have not been impressed by his attentiveness or availableness nor by his ability to communicate that he cares. (I should probably leave this sentence out as it is just complaining)

    We don't want to go to cytoxan unnecessarily but don't want to lose hearing either. I don't know how they are going to know RTX is working because her labs have been mostly fine through all of this.

    Thanks

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    Default Re: How long can you be on 60mg prednisone and can you go back up from 50?

    Hi mater.
    I was on 100mg or more of prednisone for nearly 3 years. I hated it. At one stage the doctors let me get off it but they decreased it too quickly. I just took more to reverse the withdrawal problems. You can bump it up any amount but the problem with it is that the higher the dose and the longer the time that you are on it, the longer it takes to get off it.
    In the finish it took me 5 months to get off it altogether.
    I have the hearing issues as well and I use them as an indicator as to the state of the Wegeners. I believe that the problem is not with the ears themselves but the pathway between the ears and the brain. The degree of inflammation, if you like.
    If this is the case, you (your daughter) will notice that the hearing will be better maybe in the morning but gets worse later in the day. This is caused by the barometric tides that occur daily.
    When I was diagnosed the ENT said that my bad hearing was due to my industrial work history. He would not accept that it was ok before the onset of the wegeners. (I had my hearing tested as part of work for the last 10 years) He said that my ears were permanently damaged and that was that. He was wrong.
    As the drugs stabilized the disease my hearing would come and go to some degree. You will learn to be very sensitive to the hearing changes with practice. I used the setting for noises from my computer and a radio to learn when it was getting better or worse.
    I still need to be facing people to hear them.
    Diagnosing problems is part of my technical background.
    I agree with you comments re your treatment. They have their set protocols to cover their asses and they will not deviate from that path. Their business is run by insurance companies.
    When I recently told the specialists I was giving up the chemo, they asked me what I was going to do for treatment as they didn't want to see me any more. Can you believe that?
    You would think that at least they would do bloods regularly to keep an eye on things wouldn't you. They are obviously not interested in my health, just my money. Don't trust any of them, learn to read your own results and double check everything they do, and use your own common sense.
    Luckily my gp is a caring person and will do bloods for me when i want or need them.

    Good luck with it.

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    Default Re: How long can you be on 60mg prednisone and can you go back up from 50?

    Hello @mater,

    One of the things most of us come to realize is that treating wegs is a combination of art and science. Each person’s experience is a bit different. That said, I was on 60 mg of pred for several months until my disease activity was stabilized. I was taking 150 mg of cytoxan then. My current treatment is an annual 1 gram dose of rituximab and bactrim 3x weekly. I got off pred about 10 months ago. I took 5 mg daily until early October 2017. It took nine months to taper off completely.

    Regarding your daughter’s doctor: He is correct about how long it takes rtx to take effect. However, having confidence in one’s doctor is very important. You might ask the doctor how many cases of vasculitis he is treating. A small number (<50) suggests insufficient experience treating the disease. You might then ask him to consult with or refer your daughter to a vasculitis expert (see list at the Vasculitis Foundation’s web site) who can either confirm adequate treatment or recommend an amended treatment plan.

    I live in Columbus, Ohio, and was diagnosed at Ohio State. However, the doctors there only saw about 35 vasculitis patients per year. About a year after diagnosis, I found this forum, and discovered that Cleveland Clinic (about 150 miles from my home) had several doctors with significant experience treating vasculitis. My OSU doctor didn’t know anyone at Cleveland, so I was able to self refer to Dr Alexandra Villa Forte at Cleveland. She’s excellent. She sees only people with vasculitis. We’ve worked together to get me into a sustained remission.

    I had some ear involvement at disease onset. I wear hearing aids and my hearing with them is ok. I had some hearing loss and tinnitus before I got sick.

    My lifestyle now is pretty much the same as my pre-wegs life — adjusted for my age of 72 years. I walk 2-4 miles several times weekly, go to Silver Sneakers at the YMCA twice weekly, play some bad golf during the summer, and maintain the landscaping at our home.

    I hope this is helpful. Feel free to ask if you have further questions.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: How long can you be on 60mg prednisone and can you go back up from 50?

    mater,
    if you do a search you will find some comprehensive threads on prednisone.

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