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Thread: Your Thoughts

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    Default Your Thoughts

    OK, as I have been posting, I have been on a very slow reduction of prednisone. Over the summer I went from 10 to 8. But at 8 my throat, sinus and teeth all went to hell in a hand bag. I had to up 20, 15, 10.
    Next week I will be getting my maintenance infusion cocktail of RTX and very high dose steroids. My thought is the day after, while I still have all those steroids in me, I donít go back to 10 prednisone, but return to 8. I know all I can do is try, but I welcome your thoughts and input.
    I am now on 2X yearly 1000 RTX. Other than this latest setback I have been doing pretty well.
    It is a downer when you seem to be in control, and you get your socks knocked off.
    As an off topic, I was just reading about the late movie star Ava Gardner. The article said when she died in 1990, she had an unknown autoimmune disease. Really makes you wonder just how vast and undiagnosed this is.
    Be well,
    Masha

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    Default Re: Your Thoughts

    I definitely know what you mean about the prednisone tapering and flare ups, I was weaning down, then the sinuses started again, constant coughing and hoarse throat. I am now down to 7.5 mg and feel tired all of the time, but I have to pay the bills so full time in ER is what I have do for now. Hang in there, we will get through this together. Sherry

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    Default Re: Your Thoughts

    Here are a few thoughts...

    1. Are your labs showing signs of disease activity? What is your sedimentation rate? What is your C-reactive protein? Are other tests within normal limits?
    2. Armed with lab results, do you feel well? If not, do you feel better on prednisone at some dosage?
    3. What does your doctor suggest about getting off pred?
    4. Once you get below 10 mg, a very slow taper might work better. As an example, you may want to reduce pred by 1 mg per month as you go from 10 mg/day down to 5 mg. When I tapered from 5 mg/day to zero, my doctor suggested I reduce dosage by 0.5 mg/month. Yes, it took nine months to go from 5 to zero, but Iíve been off pred since June 2018 with no issues.
    5. While we all want to get off pred, for some of us, it may not be possible. A small maintenance dose may be necessary to keep the symptoms away.
    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: Your Thoughts

    My WBC is elevated to 16.39, Segs and Bands are 13.20, C-Reactive protein 10.8, Proteinase 3 antibodies and ANCA still read Positive, no numbers given. My Doc is weaning me from 40mg down to 7.5mg, feeling it too! I drop 2.5 every 2 weeks until I am off of them. Feeling worse with each taper, see Dr. in November and another Retuximab infusion in Dec. Sherry

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    Default Re: Your Thoughts

    Quote Originally Posted by sshiveley View Post
    My WBC is elevated to 16.39, Segs and Bands are 13.20, C-Reactive protein 10.8, Proteinase 3 antibodies and ANCA still read Positive, no numbers given. My Doc is weaning me from 40mg down to 7.5mg, feeling it too! I drop 2.5 every 2 weeks until I am off of them. Feeling worse with each taper, see Dr. in November and another Retuximab infusion in Dec. Sherry
    IMHO (Iím not a doctor), you still have disease activity. If youíre feeling worse after each pred reduction, youíre either tapering too fast or not getting proper treatment. You might want to talk with your doctor about returning to a higher pred dose (where youíre feeling better) or a change to your immunosuppressant/cytotoxic med.

    How many GPA patients does your doctor see? If itís a small number, you might want to either have him consult with a vasculitis specialist or refer you to one for treatment. If your doc balks at this, it may be time to find another doc.

    I hope you and your doc can develop a treatment plan that allows you to feel better soon!
    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: Your Thoughts

    Quote Originally Posted by Masha View Post
    OK, as I have been posting, I have been on a very slow reduction of prednisone. Over the summer I went from 10 to 8. But at 8 my throat, sinus and teeth all went to hell in a hand bag. I had to up 20, 15, 10.
    Next week I will be getting my maintenance infusion cocktail of RTX and very high dose steroids. My thought is the day after, while I still have all those steroids in me, I donít go back to 10 prednisone, but return to 8. I know all I can do is try, but I welcome your thoughts and input.
    I am now on 2X yearly 1000 RTX. Other than this latest setback I have been doing pretty well.
    It is a downer when you seem to be in control, and you get your socks knocked off.
    As an off topic, I was just reading about the late movie star Ava Gardner. The article said when she died in 1990, she had an unknown autoimmune disease. Really makes you wonder just how vast and undiagnosed this is.
    Be well,
    Masha
    Hi Masha,

    On the contrary - for me the drop from 100 or 120mg on rtx day to 5mg the day after is too much and in the last years (I am on rtx every 6 months since 2013) I even took 20mg the day after and sometimes even continue 2 more days - 15, 10 and back to 5.

    So my suggestion is not to try your plan.

    It is also problematic because you are now during the time when rtx is less working. 2 months AFTER you will get it, and while it is already working much better, you can try to reduce the pred. It is useless to try to reduce the pred only to end up elavating it higher because it can't hold enough.

    Sorry.

    I pray for you ❤
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: Your Thoughts

    My Dr specializes in Vasculitis, I am hoping the rituximab in December will do the trick. Seems as though when I taper down, symptoms flare up again, gee, even my freakin heels hurt now. I taper 2.5 mg every 2 weeks, I'm at 7.5 now and I am feeing it. I see the Dr. again next month, will have to get her opinion. The double vison in rt peripheral isn't getting any better, but at least I still have my eyesight. Driving in unfamiliar areas is a challenge to say the least. Sherry

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    Default Re: Your Thoughts

    Pete, my sedimentation rate is 9. Doc said normal was 0 to 15. My Canca was positive, she said low, results before that 1.4. I never get a negative reading there. All other tests, over a dozen were normal. Doctors have told me not to stress out over C-anca, because that is not the only determining factor, when everything else looks good.
    Alysia, I think you are spot on about letting the RTX take effect. There was too much time between infusions and I donít think my body had too much left in system. The time lapse was caused by a few things, no ones fault in particular. Probably why I was able to do Peteís slow taper at first, then as time went on my body didnít have much resistance left in it.
    I am so glad I am getting infused this week. Going to a different place, where my husband can actually sit with me. Iíll even have control of my own TV. I look at this as a healing, even though the steroids jack me up to the level and appetite of a sumo wrestler. I think of Pete talking about the Italian restaurant near CC and John taking pictures of pie on his way back to Chicago. I know we are all good most of the time, but just a tad bit of bad wonít hurt.
    Sometimes I go along and things seem near normal and then there are the other times. But keep in mind my husband is 76 and I will be 70 in a few months. So all things considered we pat each other on the back and love our dogs.

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    Default Re: Your Thoughts

    Prednisone dosage needed can vary greatly just like our symptoms of GPA over time as well as from person to person. After my initial diagnosis in 2010 I was able to taper my pred down to 10 without too much trouble over a period of several months. Above 50 I could drop 10 mg every two weeks. After 50 I dropped 5 every two weeks till I got to 10. I did have to back up a few times but did get to 10 after some months. From 10 to 5 I dropped .5 every two or three weeks. I would wait till the symptoms from the drop disappeared for around five-seven days and then start the next one. It took some work and I had to have various sizes and cut tablets to do it but eventually got to five with no significant problems where I stayed for years.

    Some times when my residual GPA symptoms increased they would boost my pred up to 20 with a taper back down by 2.5 every week to return to 5. This summer though it has not worked for me and I am currently at 10 and might have to increase it if my nose bleeds persist or if joint pain increases. I have to hold my AZA too right now to treat my pneumonia and sinus infection and bronchitis. I got IV antibiotics for several days in the hospital for sepsis but am now home on oral meds for next ten days. I was at 7.5 pred when i went to hospital but they upped it to 10. I will resume my maintenance AZA when I finish my antibiotics if the pneumonia and other infections are gone.

    Some people like to taper fast and tough it out through the symptoms of the decrease. This works fine it you do not have a flare that requires RTX or an increase in your immu-suppressants. Others like to go slow to minimize this risk. Tapering pred works best if you and doctor have the same preference on how is best for you. But like every thing else there is no one size fits all.
    Last edited by drz; 10-15-2019 at 02:35 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Your Thoughts

    Quote Originally Posted by drz View Post
    Prednisone dosage needed can vary greatly just like our symptoms of GPA over time as well as from person to person. After my initial diagnosis in 2010 I was able to taper my pred down to 10 without too much trouble over a period of several months. Above 50 I could drop 10 mg every two weeks. After 50 I dropped 5 every two weeks till I got to 10. I did have to back up a few times but did get to 10 after some months. From 10 to 5 I dropped .5 every two or three weeks. I would wait till the symptoms from the drop disappeared for around five-seven days and then start the next one. It took some work and I had to have various sizes and cut tablets to do it but eventually got to five with no significant problems where I stayed for years.

    Some times when my residual GPA symptoms increased they would boost my pred up to 20 with a taper back down by 2.5 every week to return to 5. This summer though it has not worked for me and I am currently at 10 and might have to increase it if my nose bleeds persist or if joint pain increases. I have to hold my AZA too right now to treat my pneumonia and sinus infection and bronchitis. I got IV antibiotics for several days in the hospital for sepsis but am now home on oral meds for next ten days. I was at 7.5 pred when i went to hospital but they upped it to 10. I will resume my maintenance AZA when I finish my antibiotics if the pneumonia and other infections are gone.

    Some people like to taper fast and tough it out through the symptoms of the decrease. This works fine it you do not have a flare that requires RTX or an increase in your immu-suppressants. Others like to go slow to minimize this risk. Tapering pred works best if you and doctor have the same preference on how is best for you. But like every thing else there is no one size fits all.
    Sorry you had to be addmitted because of sepsis. Sounds tough. Thank God you are back home.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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