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Back again. 5 months 1 week ago #70138

  • MelA
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There is nothing wrong with a count of 97k!!
Good for you!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Back again. 5 months 1 week ago #70139

  • Chad89
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Count was 127k today so hopefully it’ll hold and keep an upward trend. I’ve heard it can take weeks for Rituxan to really work.

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Back again. 5 months 3 hours ago #70215

  • Evansmom1
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I am sorry to hear your ITP came back. I just posted a couple minutes ago about my sons returning after 3 years. His platelets are at 14k right now. I didn’t know it could come back, but you are a perfect example of what I was asking. Thank you for sharing and I’m happy to see your platelets are up a bit!
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Back again. 4 months 4 weeks ago #70222

  • Chad89
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Yeah I guess I had kind of put it in the back of my mind and it reminded me quickly that I’m stuck with it. Is your son getting good treatment and results?

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Back again. 4 months 4 weeks ago #70223

  • Evansmom1
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Ugh I’m sorry you have to deal with this too. We will hopefully know more tomorrow, he sees his hematologist in the morning.

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Back again. 4 months 4 weeks ago #70231

  • Chad89
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Hopefully they find a treatment that doesn’t give him unwanted side effects. My platelets were at 170k today so hopefully they hold. This was my first time getting Rituxan. When I was 18 it normalized with prednisone. That didn’t work this time. Lots of people on this forum have great stories though about what worked for them.

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Back again. 4 months 3 weeks ago #70236

  • MelA
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Good count Chad! Have you finished your Rituxan treatments?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Back again. 4 months 3 weeks ago #70238

  • Chad89
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Yeah I’m happy with that. I just had the two infusions of it. Last one was Oct 30th.

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Back again. 4 months 3 weeks ago #70239

  • Chad89
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I taper down to 10mg of prednisone on Tuesday

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Back again. 4 months 3 weeks ago #70240

  • MelA
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Only 2 infusionis - gotcha. Good luck with the taper Tuesday!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Back again. 4 months 3 weeks ago #70241

  • Chad89
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Yeah just the two. I was also surprised because I’ve heard from others that it’s usually 4

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Back again. 4 months 3 weeks ago #70245

  • MelA
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That is what I hve heard too Chad - 4.
Back when my friend got Rituxan for ITP it was 8 - it took care of her ITP and her RA.

Today starts your taper.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Back again. 4 months 2 weeks ago #70247

  • Chad89
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Count was 197k yesterday. Dr is hoping the Rituxan holds. Yeah this is my last week on prednisone

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Back again. 4 months 2 weeks ago #70249

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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Good count Chad. Long may it hold. I hope the drop from 10mg to 0mg of Pred does not cause adrenal insufficiency.

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Back again. 4 months 2 weeks ago #70262

  • MelA
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Fingers crossed for you Chad - great count.

You are going from 10mg to no prednisone? The body naturally makes I think it is 7 .5 [mrsb is that right?] - so if you have been on more than that the body stops making it - I thought one needed to go slower to 0 pred so that the body would kick in and start making it again.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Back again. 4 months 2 weeks ago #70265

  • mrsb04
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Mel:-You are correct, physiological dose is classed at 7.5mg. From 10mg-0mg in one go after more than 3 weeks on steroids is just plain dangerous.
Chad:- I went through hell the first time I tried tapering. I created the topic below in the hope that no-one else has to suffer. Please read it
pdsa.org/discussion-group/5-newly-diagnosed-a-frequently-asked-questions/30450-advice-for-anyone-new-to-steroid-tapering.html#67676
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Back again. 4 months 2 weeks ago #70268

  • Chad89
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My dr has me decreasing to 5mg for a week then down to 0

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Back again. 4 months 2 weeks ago #70270

  • mrsb04
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Totally against protocol, Good luck

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Back again. 4 months 2 weeks ago #70275

  • CindyL
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If my memory serves me correctly, I do believe I went from 10 to 7.5; then to 5 ending at 2.5. And I think I stayed there for quite a while before getting off them completely. This was done slowly.

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Back again. 4 months 2 weeks ago #70290

  • sleev-les
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CindyL wrote: If my memory serves me correctly, I do believe I went from 10 to 7.5; then to 5 ending at 2.5. And I think I stayed there for quite a while before getting off them completely. This was done slowly.


^^This

I am at the 7.5mg now and doc already stated that we may not be dropping each week. When we do drop it will only be by 2.5mg so no matter what my bloodowork is (assuming it is stable or higher) I could be at the same dose for another week or so.

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Back again. 4 months 2 weeks ago #70291

  • Chad89
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Yeah I’m not sure. Just what the dr said. Maybe I’ll do my own thing and go to 7.5 mg this week just to be safe.

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Back again. 4 months 2 weeks ago #70292

  • mrsb04
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Maybe I’ll do my own thing and go to 7.5 mg this week just to be safe.

Very wise Chad. Personally I'd stick at 7.5 for two weeks.
Have you asked for some 1mg tabs in case a 2.5mg drop is too much? Much easier to manipulate dose with 1mg tabs.

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Back again. 4 months 2 weeks ago #70295

  • Chad89
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No I just have the 20mg tabs. My dr thinks that 10 to 5 to 0 is good but I’ll probably go with 7.5 for at least a week

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Back again. 4 months 2 weeks ago #70297

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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If that was my Dr I would be looking for a new one.

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Back again. 4 months 1 week ago #70314

  • Chad89
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Count was 233k yesterday. How bad does Rituxan effect the immune system? I know it targets B cells but that T cells are what help fight viruses? Not sure how fucked I’d be if I got Covid. Tried researching but there is limited data on Rituxan and COVID

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Back again. 4 months 1 week ago #70315

  • gozorakgogo
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my understanding is that its 6 to 9 months of an impacted immune system If my memory serves me right. I received my 4 weekly retux infusions back in jul/aug of this year. 2 weeks after my final infusion my levels were well over 150 every week I went back for a CBC. I had been also getting weekly Nplate injections up until first week of November when the decision was made to stop for a bit to see how I would respond. I havent been back since. Was supposed to still go for weekly CBC's but combination of work and wanting to break "oh dear what will my weekly platelet level" anxiety led me to blow off. Im not going back till first week in January to see Hemo and get next blood test.

Im an "essential worker" working in the public. Ive been out in the world this whole pandemic except for the 7 week out of work staycation I had because of my ITP hospitalization/diagnosis/Retux treatments/getting my levels up to a decent level back in july/aug. Im guessing having ones immune system kneecapped by Ritux cant be a helpful thing but sometimes there isnt much you can do about it other than take precautions and not think about it.

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Back again. 4 months 1 week ago #70319

  • JJ
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Rituximab does kill off the B cells. The B cells make antibodies so if those of us on ritux got covid we couldn't kill it off with antibodies. Problems then!

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Back again. 4 months 1 week ago #70320

  • poseymint
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Chad89- When you taper prednisone by 5mg as your doctor advised, just watch for adrenal insufficiency. Symptoms I've experienced are weakness, tired, low energy, muscle tiredness, joint pain, aches, feel like you are getting sick- fluish, depression, feel like you've been hit by a truck. Those are just some of the symptoms of tapering too fast. The answer is to take a bit more pred until you feel okay again, and then slow the taper down.

I looked up rituxin and Covid and it seems it does cause worse outcomes in people with MS and rheumatological disorders. Those people have underlying conditions which may have contributed to the outcome. Heres just one link. There are a number of articles. One article said prednisone 10mg contributed to worse outcomes also.
ard.bmj.com/content/early/2020/06/25/annrheumdis-2020-218075
Best to be very cautious these days. I was considering rituxin low dose but think I'll wait. I'm on Nplate now. I've had rituxin once, I was in my 50s, 4 full doses and went through a flu season without getting a cold or anything. That is unusual for me. My counts were brought up a bit and it lasted 6mos with no side effects. Stay safe out there everyone!

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Back again. 4 months 1 week ago #70322

  • gozorakgogo
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I was supposed to have a final week of taper from 5 mg to 2.5 mg back in late August. My taper would have ended on the day I went back to work. I didnt want to wait that long. I was afraid that if I took my final dose on my first day of work, after having been out for 7 weeks, that I would experience bad symptoms those first few weeks back. So I stopped a week early with 5 mg being my final dose. I had never felt so fatigued in all my life. It was terrible and I had a terrible first week back at work. The worst. Finally I began getting out of it. Dont cut your taper short.

I hated Pred. It had some positive effects. I never had or felt depression. I actually had a happy high for the first few weeks and I noticed my gaming on Xbox improved. I had a bit more clarity even though I was up all night. The insomnia I didnt mind because I wasnt working and I could nap if I needed to even though I didnt. The insomnia was bad however because I was up all night and I would become euphoric around 4 am because that meant that Hardee's would open in 1 hour. My appetite was insane. Ive always eaten only one meal a day with no difficulty ignoring feeling hungry. Not while on the Pred. I wasnt even supposed to be driving but I went every morning at 5 am for two weeks and would get a country ham biscuit, a chicken biscuit, a steak biscuit, a large Coke and stop by 7-Eleven to buy donuts. That was only breakfast. I gained 15 lbs in a month and although I have been able to lose weight, my body proportions are not the same as they were before Pred. Pred created a ghastly spare tire that is not going away as quickly as the weight gain. I hate you PREDNISONE!!!! lol

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Back again. 4 months 1 week ago #70323

  • Chad89
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I took all of your advice and I’ve been on 7.5 prednisone for the last week. I will taper to 5 for a while then 2.5. Gonna take it easy.

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