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ITP Diagnosis 5/23/2019

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ITP Diagnosis 5/23/2019 3 years 8 months ago #66964

  • MelA
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Hal unfortunately Audi passed away a while back - it was probably before this new & improved forum was loaded. Yes - Tamar.

Not sure if WinRho would be the 1st treatment if I needed to treat again - would all depend on what my insurance allows.

No reason to test for Mono antibodies.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP Diagnosis 5/23/2019 3 years 8 months ago #66973

  • midwest6708
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The main thing want to say is... If you're feeling reluctant about Rituxan, listen very carefully to those feelings.
For one thing, it doesn't have specific FDA approval as an ITP treatment.
Secondly, it's far from an innocuous drug. For that reason alone, I resisted taking it for 5 years after my doctor recommended it. When I finally relented, I still had the same nervous qualms. Now that it's done, I'll forever regret I didn't listen to my gut feelings. Even if your doctor tells you she's never seen a major side effect, that means nothing. Mine told me the same.
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ITP Diagnosis 5/23/2019 3 years 8 months ago #66975

  • ecoclayton
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Another day another Dr appt. Today 6/11/19 platelets were up to 66 from 54 on 6/8/19 at 60 mg pred. I refused the Rituxan and told nurse I want to look at Promacta option. I go back Monday to see Dr, but I am hoping that numbers will be up or stable. She also lowered me to 50 mg pred. The drop in pred from 70 to 60 has been tough this week, so I hope I can handle 50 mg. I also met another Hemo today and have an appt set up for Aug 5th with her.

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ITP Diagnosis 5/23/2019 3 years 8 months ago #66976

  • CindyL
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I couldn't get NPlate or Promacta so I did do Rituxan. Been in remission from it since 2011. No major issues, off all ITP meds. I'm not sorry I did it. But, everyone is different.
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ITP Diagnosis 5/23/2019 3 years 8 months ago #66977

  • mrsb04
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  • ITP since 2014. Retired nurse. 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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When you say the drop in Pred was tough what do you mean? There should not be any withdrawal symptoms at this stage of pred tapering

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ITP Diagnosis 5/23/2019 3 years 8 months ago #66978

  • ecoclayton
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mrsb04,
When I dropped Pred from 70 mg to 60 mg I felt much more tense and emotional and my hands were jittery. It seemed to last for just a day or so. Maybe I drank a little too much caffeine or something. I also had a really busy day with 2 Dr appts and 2 other work appts so that may have been a factor as well. Dr wants me to reduce to 50 today, but only 3 days at 60 then to 50 seems too fast so I may spend another day at 60.

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ITP Diagnosis 5/23/2019 3 years 8 months ago #66979

  • mrsb04
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I'm surprised at withdrawal symptoms from that sort of dose. I never had any problems until I got down to 15mg/day.

These are the latest guidelines from uptodate.com
●5 to 10 mg/day every one to two weeks from an initial dose above 40 mg of prednisone or equivalent per day.
●5 mg/day every one to two weeks at prednisone doses between 40 and 20 mg/day.
●2.5 mg/day every two to three weeks at prednisone doses between 20 and 10 mg/day.
●1 mg/day every two to four weeks at prednisone doses between 10 and 5 mg/day.
●0.5 mg/day every two to four weeks at prednisone doses from 5 mg/day down. This can be achieved by alternating daily doses, eg, 5 mg on day one and 4 4mg on day two.
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ITP Diagnosis 5/23/2019 3 years 8 months ago #67014

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Woohoo, today's count was 102 up from 66 just 4 days ago. I started taking 1000 mg Vitamin C 3 days ago and am curious if that could be it? I haven't made any other changes so we will see what counts come in at later this week. I am currently at 50 mg pred and dropping to 40 tomorrow. It seems withdrawal symptoms were either in my head or caused by something else because I am not having any now.

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ITP Diagnosis 5/23/2019 3 years 8 months ago #67016

  • MelA
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Good count - happy for you. Personally, if vitamin C were the answer I'd have been cured years ago :) But who know.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP Diagnosis 5/23/2019 3 years 8 months ago #67029

  • Hal9000
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That 102 sounds really good. I'm not trying to rock the boat here, but let me ask a question. Hopefully consideration of the answer will be instructive.

If one's immune system will eventually figure out the problem and remission becomes possible, but it takes a year to happen, which would one rather do? Take (high dose) steroids for a year, or, take Promacta for a year?

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ITP Diagnosis 5/23/2019 3 years 8 months ago #67034

  • MelA
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Hal to answer your question - I would take neither, unless I was outright actively bleeding, as you are promising a "cure" in a year when my immune system figures out the problem & stops the antibodies being made and puts me in remission. [not to mention if one's immune system could ever really "figure out the problem" then it could figure it out for any & all autoimmune disorders and I'd be one happy camper to get rid of the 3 I have!!] But I am serious about my answer - if I knew I would be better in a year I wouldn't take a thing unless I'm bleeding.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP Diagnosis 5/23/2019 3 years 8 months ago #67045

  • Hal9000
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Melinda, how many months/years was it between your ITP diagnosis and your last ITP treatment?

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ITP Diagnosis 5/23/2019 3 years 8 months ago #67048

  • ecoclayton
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Hal,
"If one's immune system will eventually figure out the problem and remission becomes possible, but it takes a year to happen, which would one rather do? Take (high dose) steroids for a year, or, take Promacta for a year? "

I think I agree with MelA that I wouldn't take anything. I know it would be tough to handle the sleep problems and mood swings I have with the Pred for an entire year. I haven't taken Promacta yet so I am unsure of the side effects, but I may try that option if I had to.

Today's counts were down to 88 from 102 just 3 days ago. I was hoping for a bump a little higher, but not a large drop so I am ok with it for now. Going to drop pred from 40mg to 30mg and see what happens on Monday's count.

A friend suggested Sesame Seed Oil Supplements and Immuplex Supplements. Anyone try these? They are used for people taking Chemo to help with Platelets.

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ITP Diagnosis 5/23/2019 3 years 8 months ago #67102

  • ecoclayton
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Counts were up to 99 yesterday from 88 just 4 days ago. Doctor is continuing with Pred taper, dropping from 30 mg to 20 mg today and then to 10 mg in a week. I will be traveling again so I won't be seeing the Dr for 2 weeks. Hopefully my counts stay stable over these next 2 weeks. Since I am heading up north, I started taking allergy medicine (Flonase) a few days ago. We will see after a few weeks of allergy meds if it makes any difference in counts. Dr said there was only a 2% chance it would affect platelets.

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ITP Diagnosis 5/23/2019 3 years 8 months ago #67108

  • Hal9000
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You and steroids seem to be getting along really well ecoclayton. Nice count.

Promacta is benign for most - well tolerated. Right, no treatment is preferred. Don't know if that is possible in your case, from a symptom standpoint? What I was hinting at with my question was that even if steroids seems to be working well, and it certainly is for you, one doesn't want to stay on it too long.

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ITP Diagnosis 5/23/2019 3 years 7 months ago #67299

  • ecoclayton
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I have been traveling a lot, so it has been a while since I last posted. Since my last post I have switched to a new Hemo and things have been going great. I have seen her 2 times and we have changed my appointment schedule from appts 2 times per week to once every 2 weeks. My last 2 counts were 85 2 weeks ago and 118 today. I was at 7.5mg pred the last 2 weeks and am down to 5 mg Pred starting today and will stay at that for 2 weeks until I see the Dr again. She suggested taking Melatonin at our first appt 2 weeks ago and counts are up to 118. I also started taking Sesame Seed Oil Pills a while ago so who knows what is working. From my experience none of it is actually doing anything, but I will continue taking them for a while. I think the fact that in the last month I have only been to the Dr 2 times makes a big difference. Seeing the Dr 2 times a week and stressing about counts does not do any good. Thanks again for everyone's support.

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ITP Diagnosis 5/23/2019 3 years 7 months ago #67302

  • mrsb04
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Nice counts

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ITP Diagnosis 5/23/2019 3 years 7 months ago #67326

  • Hal9000
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Oh my yes, things are going great for you. LOL, maybe you need to have another vacation to make sure of progress?

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ITP Diagnosis 5/23/2019 3 years 6 months ago #67498

  • ecoclayton
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Well it looks like I am in need of another vacation:) My counts today were at 90, down from 118. It has been over 3 weeks since my last test, but Hurricane Dorian caused me to reschedule my 2 week appt. I haven't really changed much. I have cheated a little on my gluten free diet, but I don't really feel that is helping things anyways. I have also had a drink with dinner a few times. Stress from the Hurricane and all that comes with that (Boarding up 2 houses, evacuating and worrying about losing your house) may have something to do with it??? Dr. took me down to 2.5mg pred today. All the side effects from the pred are gone since I went to 5mg. I am hoping that means in 2 weeks I can be done with the prednisone!

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ITP Diagnosis 5/23/2019 3 years 6 months ago #67501

  • mrsb04
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Personally if I knew I was under stress, much as I absolutely hate steroids, I would not drop my dose for a couple of weeks and then not by 50%.

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ITP Diagnosis 5/23/2019 3 years 6 months ago #67503

  • MelA
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Sorry you had to deal with Dorian! I'm with mrsb - that much stress I wouldn't drop my dose by 1/2 either. Stress can lower count from what people have said here.

I'll tell you though, my former hematologist [liked her but not the drive so got one closer to home] would have told me there was not difference between a count of 90 and a count of 118. Do you need a gluten-free diet because you physically need to do it or are you just doing it to see if your count will go up? Just my opinion - but I feel a gluten-free diet won't make a difference in count.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP Diagnosis 5/23/2019 3 years 6 months ago #67510

  • ecoclayton
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MelA and mrsb,
Fortunately, Dorian missed us so the stress of Dorain is over. We were directly in the path until it stalled in the Bahamas and then headed north. I went ahead with the Pred reduction and hopefully all goes well.

I didn't go gluten free for ITP. I actually was trying it for some swelling I had in may hands before all this ITP stuff, but it is possible the prednisone took care of it. I have been trying to stay gluten free until after the pred to see if the swelling comes back and then slowly start a normal diet again.

I do feel that it is possible stress has been a major factor with my ITP. It has been a really stressful 2019, but things have been getting better and so have my counts. There seems to be a nice correlation with vacation and higher counts.

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ITP Diagnosis 5/23/2019 3 years 5 months ago #67596

  • ecoclayton
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Just back from the Dr. and had a count of 81. That is down from 90 from 2 weeks ago. I know that 90 and 81 are basically the same, but I would love to see a higher number. I have been on 2.5 mg pred per day since my last appointment and now the Dr wants me to drop to 2.5 every other day for 1 week and then stop. I have not had any side effects with the taper so far. I will see the Dr again in 2 weeks.

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ITP Diagnosis 5/23/2019 3 years 5 months ago #67599

  • MelA
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Yes, my former [changed so wouldn't have the long drive] would have said 90k and 81k are the same.
I did a much slower taper than you - but I had been on pred for a few years. My hematologist wanted me to stop cold turkey but my mind could not get wrapped around that.

So glad Dorian missed you!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP Diagnosis 5/23/2019 3 years 5 months ago #67608

  • Hal9000
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... I have been on 2.5 mg pred per day since my last appointment and now the Dr wants me to drop to 2.5 every other day for 1 week and then stop...

LOL, any plan where steroid dose goes to zero sounds like a great plan.

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ITP Diagnosis 5/23/2019 3 years 5 months ago #67832

  • ecoclayton
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I think I missed a count update a few weeks ago, but I have basically been stable over the last month. Was at 81 then 77 and today 75 on a 2 weeks Dr. schedule. Dr. is really happy that I have remained stable after being off Prednisone for almost a month. Taper went great. I don't feel like I had any withdrawal issues. The Dr has changed my appt. schedule to once a month now. I have tried Papaya leaf extract and Sesame Seed oil over the last month and don't think it is making a difference. I will stop with them and see what happens at my next appt. Has anyone had any success with any other supplements?

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ITP Diagnosis 5/23/2019 3 years 5 months ago #67841

  • Hal9000
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Excellent news ecoclayton. Nice consistent values. Not many folks can get a partial or full remission either one with steroid treatment alone. ITP seems to be very mild.

FYI. I would be remiss if I didn't relay to you about JJ's recent report. She took Rituxan AFTER achieving her partial (30-80 count) remission via Nplate. The partial remission seems to have converted to a full remission.
pdsa.org/discussion-group/7-treatment-general/30412-nplate-loss-of-response-antibodies-to-nplate.html#67352
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ITP Diagnosis 5/23/2019 3 years 1 month ago #68411

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Hello all,
I haven't posted in a few months because I have been trying not dwell on this ITP as much. Since my last post I have had a few Dr appts and Platelets were ranging from 64 - 75. I have not been on any meds at all. My last appt was just before Christmas and my counts were at 66. Fast forward 6 weeks and I am now at 38. It seems the Prednisone effect has worn off. The only real change is that I have been working out again for the last 4 weeks getting ready for a ski trip. I told my Dr that I have not noticed any changes and I actually expected my counts to be much higher. I have had no bruising, fatigue or bleeding. I have been feeling great! I go back to the Dr in a couple weeks and am hoping for a nice rebound.

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ITP Diagnosis 5/23/2019 3 years 1 month ago #68471

  • Hal9000
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Clayton, most of you folks with a partial remission work out. What is the connection? I dunno. But I don't mind guessing based on a small amount of evidence. A guess is better than nothing - which is the current state of affairs. Take a look at this post by JayInChicago and the thread in general.
pdsa.org/discussion-group/7-treatment-general/30169-no-response-to-ivig-ack.html#64548
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ITP Diagnosis 5/23/2019 3 years 1 month ago #68480

  • ecoclayton
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Back from the Dr. with a count of 39. We decided to stay with the watch and wait strategy since I didn't drop anymore. I didn't change a thing since the last appt so I think I might try adding something to see if there is a change at the next appt. A lot of what I tried before was while I was on prednisone and since I am drug free now maybe I will get different results. I had a nice bump when I last tried Melatonin, so I guess that is as good a place to start as any.
Hal,
The multivitamin I am taking has 400 mcg Folic acid. I have been taking it since 6/17/19 and counts have ranged from 73 - 38 with a high of 118. My wife actually suggested stopping all Vitamins to see if that makes a difference, but during flu season I am a little hesitant.

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