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Thread: Prednisone Reduction, Flonase

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    Default Prednisone Reduction, Flonase

    I know we have discussed this topic before. I am now down to 10 mg. of prednisone. Pete said it took him 9 months to get from 5 to 0, but how long to get from 10 to 5?
    Thanks to so many of you who answered my sinus medication question. I am now on one Mucinex, Flonase and of course Sinu Pulse. This combination has allowed me to sleep without congestion.
    Currently having my third series of Rituxan infusions. Consider myself a lucky one, because I can handle it. Will feel better when I see new blood work..should not worry over the unknown.
    Masha

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    Default Re: Prednisone Reduction, Flonase

    When I was at 10mg of prednisone a day, I tapered by 1mg every 2 weeks.

    Masha, are you able/allowed to try 9mg/day next? What happens?

    I'm currently down to 5mg/day and I have to stop tapering for now because symptoms are starting come back. Yours is a good question, perhaps someone can help to clarify.

    I'm at 5mg/day. Do I need to go ramp up to 10mg/day to quench the inflammation enough that tapering by 1mg will break through my 5mg/day barrier and below?
    Last edited by seied; 10-03-2018 at 12:23 PM.

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    Default Re: Prednisone Reduction, Flonase

    My taper from 10 to 5 was -1 mg/month. Once I got to 5, I stayed there for two years. I would try to get from 5 to 0 also at -1 mg/month, but couldn’t stay symptom free below 3 mg. The third try has been the charm so far.
    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: Prednisone Reduction, Flonase

    Flonase really helps me, too. I don?t see many mentions, but for me Flonase and Nasalide before that really helps sinuses. I just finished my third series of Rituxan Monday and had my cough come back during iv and I thought the steroids were opening up my lungs, but it has become a flare had to start back on 60 prednisone and Bactrim. Is anyone else using a nebulizer and if so what?s the combo? I don?t have a good pulmonologist and need to be able to tell my rheumatologist. When I got sick traveling in Switzerland they gave me pulmicort, can?t remember amount, albuterol and one more thing plus saline. Is anyone else doing this?


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    Default Re: Prednisone Reduction, Flonase

    I'm wishing you all the best with tapering. I haven't been very successful, as I have to go up and down. I was at 6mgs a year ago and am now back up to 15mgs.
    Taper very slowly, so that you don't have a flare hit you. You will know by how you body feels when you should hold the taper. I would very much keep my doc in the loop of how you are doing during your process.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Default Re: Prednisone Reduction, Flonase

    Quote Originally Posted by seied View Post
    When I was at 10mg of prednisone a day, I tapered by 1mg every 2 weeks.

    Masha, are you able/allowed to try 9mg/day next? What happens?

    I'm currently down to 5mg/day and I have to stop tapering for now because symptoms are starting come back. Yours is a good question, perhaps someone can help to clarify.

    I'm at 5mg/day. Do I need to go ramp up to 10mg/day to quench the inflammation enough that tapering by 1mg will break through my 5mg/day barrier and below?

    Thanks to to all of you who replied to my question. This prednisone decrease is a real conundrum.
    After my second series of infusions my Rheumatologist suggested that I try to reduce the Prednisone. I made it to 10 with no problem. Unfortunately, I went directly to 7.5 too fast and had serious mouth problems, eating felt like I was chewing glass. Going back to 10 didn?t help, I ended up back at 15. Managed a slow decline back to 10, then I had a flare and had to go up to 40, worked myself down to 12.5. Now I am on my third series of infusions. Since they give me 100 mg. of prednisone with Benadryl and Rituxan, I feel this is a good time to try the prednisone decline, yet again. I am down to the proverbial 10. My plan is to go to 9.5 and hold for 3 to 4 weeks. If it works I will go to 9 and hold for a month. If I can get to 5, I will be happy. During this time, I will have my doctors appointments and blood work.
    I appreciate all of you sharing your successes and fails. Makes me feel like I am not alone, like how can they jump off of it and I cannot.
    On the good news, the Rituxan is working for me. I am feeling stronger and feel like walking and have the desire to drop the weight. The stationery bike in my bedroom looks at me every day, calls out my name and tells me to get back in the saddle. But there have been days I no sooner make the bed than I feel like falling back in.
    I have a good question I have been saving for all of you, but I will keep you guessing and make it a topic for next week.
    Masha

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    Default Re: Prednisone Reduction, Flonase

    hello
    I am trying to taper from 5mg pred to 2 1/2. Joint pain seems to come back when I get there so I go back up to 5. I keep trying. Seems like my meds are always being adjusted by someone.
    little jerry

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    Default Re: Prednisone Reduction, Flonase

    Hi Jerry, You May want to look at the “Pred taper completed” thread to read what my doc suggested as a pred taper. I’ve been off the stuff since late June with no problems.
    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: Prednisone Reduction, Flonase

    How fast you taper depends upon your tolerance to the risk of a flare and tolerance of discomfort. The faster you go, the most likely you will have symptoms that cause you to stop the the taper and a need to back up. There is a risk of serious flare too and the degree of damage it might cause and your ability to survive such a flare is an important consideration.

    Some people can tough it out for a brief but fast taper if their Weg damage has been minor or minimal. Fast tapers also generally work well for some one who had a short term major crisis and need higher dosage of steroid for a brief period.

    Others can't afford to to take the risk,especially if they have been very dosage of steroids for longer period of time, so they need to go extremely slow. I was one of those. I tapered a 1/4 of a MG every two or three weeks from 10 to 5 till the symptoms of the decrease disappeared or my body got adjusted to the lower dosage. It took many months to get from 70 Mg to 10 Mg once I left the hospital. Inpatient I remember getting 1000Mg of Solumedrol which equals 1650 Mg of prednisone. But this was necessary to survive.

    My doctors did not want me to go further than 5 Mg because of risk of serious flare since i was badly damaged by the initial Weg attack and had to spend several months in in patient care to attain a partial recovery. But I had only minor discomfort by using such a slow gradual approach in my taper from 10 to five Mg. Like everything else there is a great individual varation and only you and your doctors can decide what approach is best for you.
    Last edited by drz; 10-16-2018 at 02:46 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Prednisone Reduction, Flonase

    Quote Originally Posted by little jerry View Post
    hello
    I am trying to taper from 5mg pred to 2 1/2. Joint pain seems to come back when I get there so I go back up to 5. I keep trying. Seems like my meds are always being adjusted by someone.
    little jerry
    Many people with GPA reach a plateau where symptoms reappear if they they try go down further. Some people can't get under 10 or more while others can get down to 2 or 3 or off totally but the risk of a flare dramatically increases when one goes off all their maintenance meds. For some people this is not a serious concern even though it may mean having more aggressive treatment again, for others though it is considered life threatening. Here is where having a good relationship with a treatment team with considerable experience in treating GPA really pays off.
    Last edited by drz; 10-18-2018 at 01:16 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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