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TOPIC: Prednisone again, alas!

Prednisone again, alas! 1 month 5 days ago #69362

  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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After an 18-year honeymoon with prednisone treating my ITP, it turned against me, and my doctor put me on Promacta. I managed to get down to 5 mg of pred/day, but some recent health concerns have prevented me from tapering further. I work with both an endocrinologist and a hematologist. An infection in my back (not Covid) landed me in the hospital for 6 days, and I've been self-infusing antibiotics at home since my release and will continue till July 31. Meanwhile, my platelets have plummeted--ranging from 9 to 12K in the past week. I'm on the maximum of Promacta recommended--75 mg/day--but that hasn't brought my counts up to "safe" levels. My doctors now have prescribed 10 mg of pred/day, which I started yesterday. My endocrinologist says we'll worry about tapering when my counts recover. The antibiotics have apparently been successfully treating the infection though they come with some unpleasant side-effects.

I'm very sad about having to increase the pred and dread having to taper again the way I did before though my endocrinologist thinks I may be able to go back down quickly as I did during my "honeymoon" period of 18 years. I know many of you have suffered with and managed to get off prednisone, and I know my circumstances are unique, but if anyone has any advice, I'm eager to listen.

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Prednisone again, alas! 1 month 5 days ago #69363

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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Oh Karen my heart goes out to you.
If you only take a short course of elevated steroids i.e. no more than 3 weeks you should (in theory) be able to go back to 5mg/day. During my marathon taper I had to take rescue doses 3 times due to viral/stress related crashes into single figures. Mind you these were only short dose increases of up to a maximum of a week.
Take it gently if you have taper is my advice. My first two attempts ended in disaster as doses were reduced too rapidly for my body to cope with. The withdrawal symptoms were awful.
It took me over 3 years of very gentle tapering to finally get off it, with the help of my (then) GP and advice from PoseyMint on here. I never came down more than 0.5mg/day at a time. When I got to 3mg a day I rested there for 6 months whilst adjusting Eltrombopag dose.
After that with advice from Poseymint on here I took it really slowly such as reducing weekly dose by a total 0.5mg and had periods of stopping the taper and sticking on a dose. It took me from March 2018 to May 2020 to get from 3mg/day to zero.
Hopefully you will not have to endure anything that long.

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Prednisone again, alas! 3 weeks 5 days ago #69410

  • poseymint
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MrsB- You are off prednisone, that is wonderful news! I'm so happy for you! Its a huge accomplishment and something to be proud of.
Even 6 months after I was completely off prednisone, I recall getting weak, shakey, fatigued when under emotional stress, when I hadn't had enough sleep, or worked long hours.
Karen- I sometimes need a short rescue treatment of prednisone- 4 days, rarely 10 days. Tapering is not hard. My only advice is don't rush the taper, go slow. Listen to your body. If you are feeling achey, fluish, joint and muscle pain, fatigue, depression then slow the taper down. And like Mrsb, you can sit at a dose for a while to let your adrenals catch up. Good luck
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Prednisone again, alas! 3 weeks 5 days ago #69412

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
  • Posts: 1566
  • Karma: 7
  • Thank you received: 411
Thank you poseymint...
Tapering Pred is the hardest job I have ever done.
I got down to 1mg/day in September and decided to stick there for 3 months. However towards the end of November I had a massive, symptomatic, crash down to 7 due the common cold. Following short rescue dosing I went back to 1mg/day but felt dreadful after a week. I added in an extra 1mg on Mondays and Fridays for the next couple months until the beginning of February when I went back to 1mg/day and did that for 7 weeks. I dropped the Monday & Friday dose for the next 4 weeks. Then I only took it on Tuesdays, Thursdays and Saturdays for another 4 weeks before stopping completely.
So far so good.

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Prednisone again, alas! 3 weeks 3 days ago #69438

  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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karenr, I'm a little bit shocked that the doctor was ok with Prednisone. Seems like Prednisone would increase the length of time to recover from the infection in your back.

I guess one has to guess whether one expects counts to recover on their own once the antibiotics are done. If one guesses so, how about this:
- increase Promacta to 100mg
If one guesses not so, how about:
- switch over to Nplate, which has a much higher range of doses than Promacta
- switch over to Avatrombopag/Doptelet and try it

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Prednisone again, alas! 3 weeks 2 days ago #69445

  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
  • Posts: 452
  • Thank you received: 55
Hal, my hema says that 75 mg/day is the max recommended by the drug maker. Have you known of those who have exceeded this amount?
There is the real possibility that the antibiotic I am on (I'm half way through the 6-week course of daptomycin) may be interfering with the Promacta. My platelets rose to 24K yesterday, but hema wants me to maintain the 75 mg/day of Promacta and the 10 mg/day of Pred. The infectious disease doctor doesn't seem alarmed that I'm on that amount of prednisone. I, of course, want desperately to be on less prednisone, though I don't have the nasty side-effects much of the time now. And the side-effects for the antibiotic are also reduced. I'm not feeling normal, but much closer to it.

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Prednisone again, alas! 3 weeks 1 day ago #69446

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
  • Posts: 1566
  • Karma: 7
  • Thank you received: 411
Karen
I found this on uptodate.com (dated June 2020) In addition to chemotherapy drugs traditionally recognized as cytotoxic to the bone marrow, some other commonly used drugs can cause moderate, but relatively specific suppression of platelet production in the bone marrow. Examples include daptomycin, so it may well be the antibiotic lowering your counts or it could be the infection itself.
As for increasing Eltrombopag dose it isn't licensed for >75mg in ITP but is for aplastic anaemia although people on here have taken higher doses for ITP.
Personally if it were me, as it is only another 3 weeks, I would not add in anything else but stick it out on current dosing and see what happens once the Daptomycin is out of your system.
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Prednisone again, alas! 2 weeks 1 day ago #69503

  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
  • Posts: 452
  • Thank you received: 55
This was so helpful, Mrs. B. I shared with my doctor. We have some hope that once I finish the daptomycin course (10 more infusions!), the Promacta will start working the way it is supposed to. Thank you.
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Prednisone again, alas! 2 weeks 22 hours ago #69509

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
  • Posts: 1566
  • Karma: 7
  • Thank you received: 411
You're welcome Karen.

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Prednisone again, alas! 1 week 3 days ago #69560

  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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karenr wrote: Hal, my hema says that 75 mg/day is the max recommended by the drug maker. Have you known of those who have exceeded this amount?
There is the real possibility that the antibiotic I am on (I'm half way through the 6-week course of daptomycin) may be interfering with the Promacta. My platelets rose to 24K yesterday, but hema wants me to maintain the 75 mg/day of Promacta and the 10 mg/day of Pred. The infectious disease doctor doesn't seem alarmed that I'm on that amount of prednisone. I, of course, want desperately to be on less prednisone, though I don't have the nasty side-effects much of the time now. And the side-effects for the antibiotic are also reduced. I'm not feeling normal, but much closer to it.

karenr, I think everyone that I've talked to on high doses (>75mg) of Promacta had a hematologist who specialized in treating difficult ITP cases.

That was an excellent find by MrsB on Daptomycin, heh? I guess some antibiotics can reduce counts a bit and some antibiotics can raise them a bit.

With a 24 count, sounds like you are going to get through it unscathed.

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