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  1. #11
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    Becky,

    Johns Hopkins in Baltimore is one of the few Vasculitis specialty centers in the US and has a top-notch reputation. If you need, you could consult with them and/or have your local docs consult with them in deciding your treatment. All the best for your recovery - between fighting the disease and overcoming the side effects of prednisone will take time, so be kind to yourself. But you will recover. Good luck.

  2. #12
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    Hi Becky, as a follow up, I had my RA appt Friday. Dr told me to go from 60 to 40 on the pred. Sat I called covering MGH (mass general hosp) Dr as I thought that sounded like
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

  3. #13
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    Oops. Wasn't done.
    I thought 60 to 40 seemed like a steep taper. He is doing a trial right now where they taper participants over 2 months instead of 6 months. He said the only symptoms I should watch for are the original presenting problems. He didn't think I'd have any problems with the taper itself because he said our bodies only produce 7.5 MG pred naturally. So 40 wouldn't be "too little". Today is day 2 of my taper to 40. I had slight headache but barely anything. I did have some chest pain but turns out that was indigestion or anxiety or something. (Per ER ) my heart is great it turns out. So I can't say that 60-40 is going terribly. Hoping your weekend is going well!
    Gab
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

  4. #14
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    Gab -
    Scary. Next Tuesday I go from 60 to 50. I will let you know if I experience anything. I see my rheumy again on 9/21. I'm sticking with what was on my discharge papers at this time. I'm a little concerned already because I'm starting to get some minor pain around my neck and shoulders again - while I'm still on 60. Not much, just a twinge -- trying not to freak. Think it might just be that I overdid it with out of town family visiting me this weekend. Not taking any pain meds at this point, but I have them available (celebrex) if I need it.
    Glad ER gave you an okay on your heart. So hard to know when and when not to be worried. Play it safe! Thinking of you.

    Becky

  5. #15
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    Becky - you can also check on drug interactions online. Just look for one drug name with the other. i.e. prednisone with celebrex. Even though there may be undesirable interactions your physician may feel the benefit outweighs the negatives but you should be aware of side effects.

    Aldena

  6. #16
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    Becky - I know it isn't always possible to have someone with you all the time at appointments. I believe there are gaping holes in our health care system and having an advocacy mechanism in place is one of those holes. Documentation is also one of the keys for anyone with these kinds of diseases. There are some wonderful suggestions and discussion threads on this forum to manage all that documentation. It becomes volumes quickly. I was glad I had the foresight to start documenting when my husband became ill - made filing for his disability retirement easier (not easy-never is). Also helps when yet another medication is prescribed - we can do our own research and see if it has been taken before and the results. Also helps in keeping track of all the tests - trending if often as or more important that just one time results.

    Aldena

  7. #17
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    I do not have Wegeners....just an up and down respiratory problem that was once diagnosed as "mild wegeners". No one really seems to know what it is I have and why it came on suddenly at age 65. I have loads of experience with prednisone, so thought I would chime in here. There are so many theories in pred tapers. I was in a cycle of tapering down, going off, and being back on after two or three weeks. Have been on as much as 125 mg while in the hospital. My new pulmy put me on long term pred about a year ago. I tried tapering down to 7.5 several times, but get sick and have to go back up. I am now at 15 mg. My PCP has suggested a REALLY slow taper going forward. I plan to get to ten and stay there for 6 weeks. Then try 9 for six weeks, then 8 and stay there for a long time. After that, I am going to try six weeks alternating between 8 and 7, six more weeks alternating between 7 and 6 etc. Will see how it goes.....
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  8. #18
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    Thanks Jacquie -

    Let us know how it goes. My ending dose at this point is projected to be 20 mg a day for 6 - 9 months. I don't know whether that'll stick or not. I start tapering tomorrow.
    Going from 60 to 50.

    See you on the path to health.

    Becky

  9. #19
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    Becky - typically when my husband is tapering he drops from 60 to 40 to 20 with two weeks in between. From 20 on down it is excruciatingly slow - reducing by 2.5 every two weeks until he gets to ten. From 10 down it is a reduction of 1 every 3-4 weeks. At one point he made it to 4. At the moment he is at 7.5 and has been for 6 months or better - after 4 1/2 years on prednisone there doesn't appear to be much incentive to go lower. Once we figure out if the Rituxan is helping at all, may start downwards again. When we do it will be by .5 or 1 every couple of weeks.

    Unfortunately most of his doctors all want to give him steroids when something goes wrong - from the pulmonologist to the eye surgeon. We have stopped that course of action except in the most extreme of circumstances due to the spinal compression fractures he has developed.

    Best wishes with your taper.

    Aldena

  10. #20
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    Quote Originally Posted by Gab122 View Post
    Since 8/1/16 i'm on pred 60 mg too Becky. 3rd rhuem appt is tomorrow. Hoping we will start taper. I heard it should be done really slowly. I imagined that was slower than one week. Maybe others will chime in their experience w/ tapering. How did your RA meeting go?
    Gab
    Welcome to the forum, Becky. You have found the right place to be if you have to have WG. Especially with such short visits with specialists, you will get more info here than anywhere, and lots of friendship and support.

    One thing to keep in mind about tapering pred: think of it in terms of percentages of drop in dose. If you are at 50mg., a drop to 40mg. is a 20% drop. Although that is significant, it becomes more extreme as you get into the lower doses, e.g. a drop from 20 to 10mg. is a 50% drop. By that time, you may have been on high dose pred (20mg. or more) for long enough, say two months or more, that your adrenals have shut down and that kind of a drop could be disastrous to your well-being. So yes, it is important to go slow, but you can go a little faster at the higher doses and lessen the chances of long term high-dose damage to your adrenals. I still say be conservative at the higher doses, too, though, when you are sicker and need to be watched very carefully. I would favor a drop from 60 to 50 over a drop from 60 to 40, and it might only have to be for a couple of weeks before going to 40. (I'm largely paraphrasing what I think I've read from a very smart member who used to be on here a lot, so anyone can correct me if I'm a little off.)
    Anne, dx'ed April 2011

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