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New to all of this 2 years 3 months ago #59079

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
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Going for a CBC in 1 hour. Monday was at 51... I think I'd feel comfortable, sane, whatever, with anything over 40... My hema tends to think I could be ok long term with anything above 30 given my lifestyle. I hope he's right... reading on this treatments is not helping my stress levels!

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New to all of this 2 years 3 months ago #59080

  • ytsejam02
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CBC was 53. Not good news, not bad. Stable. My hema would've liked to have seen it go up, hey, me too, but we both liked that it was "stable". Granted was only 4 days, and I did ask how much these counts swing in a normal person, and he admitted quite a bit. But you know, I'm still weening prednisone. I My 51 was basically off the week where I weened from 70 to 40 (day of). Yesterday I started 30. I know I shouldn't get hung up on the numbers... my next follow up Friday could be horrible. Based on what I keep seeing from other people in this forum, it could be good. I'll know when I know.

So, I'm going to feel good about this right now. I'm going to enjoy the mother's day weekend with my family, my parents, and my in laws. And I wish all of the Mom's on this board, a very happy Mother's Day!

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New to all of this 2 years 3 months ago #59081

  • D.Mann
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That is a great count with such a drastic drop in meds.
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New to all of this 2 years 3 months ago #59082

  • momto3boys
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Congratulations on the great count! For the rapid nature of your taper, your platelets are holding VERY well. A very good sign that maybe your visit to the land of ITP will be brief and uneventful. Perhaps it was the antibiotic causing some drug induced thrombocytopenia and as more time passes you will rebound on your own. You really never know, but take the good news and go out and have a great weekend!

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New to all of this 2 years 3 months ago #59083

  • Sandi
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The next count will tell a lot since you just tapered again yesterday. That is a very fast taper.

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New to all of this 2 years 3 months ago #59102

  • ytsejam02
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Sandi wrote: The next count will tell a lot since you just tapered again yesterday. That is a very fast taper.


I completely agree on all counts. I just tapered again yesterday to 20. Wed will be 10. I feel good, for what that is worth. To me it's worth a lot. :-) To the point where if push comes to shove, I think I'd look to give the Prednisone another shot with a slower taper, rather than jump straight to Rituxan. He even suggested that if I had dropped to, say 30, he probably would've upped the Prednisone again, which is sorta amusing since that's pretty much exactly what you said, and that it would get old fast.

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New to all of this 2 years 3 months ago #59103

  • Sandi
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I can usually spot the doctors that up the dose. They are the ones that do the quick taper then seem surprised when counts tank. There is nothing wrong with trying it again if that's what you want to do. Hopefully he'd handle the taper a bit better the second time around.

Feeling good means a lot! It's much easier to get through the days if you don't feel miserable. When is the next count?

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New to all of this 2 years 3 months ago #59105

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
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Sandi wrote: I can usually spot the doctors that up the dose. They are the ones that do the quick taper then seem surprised when counts tank. There is nothing wrong with trying it again if that's what you want to do. Hopefully he'd handle the taper a bit better the second time around.

Feeling good means a lot! It's much easier to get through the days if you don't feel miserable. When is the next count?


Friday morning.

He didn't seem surprised about the decrease from 87 to 51. I couldn't get a read on how he felt about the 51 to 53 (after 4 days). I mean, everything I've read implies there are too many variables to get any kind of predictability. One of the reasons I'm interested in trying Prednisone again, is because I have allergies, and I could be totally off base with this, but given the amount of allergens out there right now, I can't help but think my immune system is working a little overtime, and thinking if I bought myself 4-6 more weeks to get past, or further into pollen season, maybe I don't have to go rushing into Rituxan. I'm also slightly concerned that he has mentioned splenectomy multiple times, as if that's the next logical step if Rituxan fails. I don't really care for the thought of removing my spleen. Not unless it had a really good success rate. In my opinion, the only upside to splenectomy is that there are decades worth of data on it and how to manage it.

That's what I'm most concerned about right now, is not rushing into anything. I also can't help but think about the amount of physical and mental stress I had leading up to this, what with my accident and all. So I'm trying to give myself sometime to mentally reset, and try to bring my body along with it. Making a mental point of actually being mentally present when I'm with my family, appreciating the time I spend with them, I want to get into meditation for relaxation purposes, stuff like that. I figure even if my counts don't behave, I'd like to feel good about myself.

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New to all of this 2 years 3 months ago #59107

  • mrsb04
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Jay
You know your body better than anyone.
Don't be pushed into treatments you don't want.
I personally would not part with my spleen under any circumstances to try treat my ITP.
I would advise slowing the taper down a bit once you get to 10mg a day of Prednisiolne. Withdrawal side effects are horrid.
Here is part of UK guidelines for steroid tapering . "There is uncertainty about disease resolution and/or therapy has been given for many weeks. Reduce by 2.5 mg every fortnight or month down to 7.5 mg per day, then reduce by 1 mg every month". cks.nice.org.uk/corticosteroids-oral#!scenario

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New to all of this 2 years 3 months ago #59109

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
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mrsb04 wrote: Jay
You know your body better than anyone.
Don't be pushed into treatments you don't want.
I personally would not part with my spleen under any circumstances to try treat my ITP.
I would advise slowing the taper down a bit once you get to 10mg a day of Prednisiolne. Withdrawal side effects are horrid.
Here is part of UK guidelines for steroid tapering . "There is uncertainty about disease resolution and/or therapy has been given for many weeks. Reduce by 2.5 mg every fortnight or month down to 7.5 mg per day, then reduce by 1 mg every month". cks.nice.org.uk/corticosteroids-oral#!scenario


I really appreciate the advise! And OMG, looking at those guidelines... I mean, I know everyone has said it's been very fast, but that puts it into perpective. He might already be considering that once I get down to 10... we haven't talked about it, but I'm sure we will on Friday, assuming I don't have to go back up.

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New to all of this 2 years 3 months ago #59112

  • Sandi
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Hmmm. I can't access that link about Prednisone.
Jay, there is a lot of info regarding splenectomy and how to prevent sepsis (although it still occurs), but there is newer info regarding thrombosis risks in ITP patients after splenectomy that many doctors and patients are not aware of.

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New to all of this 2 years 3 months ago #59121

  • Rob16
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Sandi,
That link doesn't work for me either... only in the UK.
Here are the are UK guidelines Anne previously posted:

Gradual withdrawal should be considered for people who received more than 40 mg prednisolone daily for more than 1 week.

•The problem has resolved and treatment has been given for only a few weeks. Reduce by 2.5 mg every 3–4 days, down to 7.5 mg per day, then reduce more slowly, for example by 2.5 mg every week, fortnight, or month.

•There is uncertainty about disease resolution and/or therapy has been given for many weeks. Reduce by 2.5 mg every fortnight or month down to 7.5 mg per day, then reduce by 1 mg every month.

•Symptoms of the disease are likely to recur on withdrawal Reduce by 1 mg every month.

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New to all of this 2 years 2 months ago #59126

  • Sandi
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We used to have a lot of discussions about Prednisone tapers years ago. This was what made sense to the majority of us as far as ITP. Ideally, an initial dose of 60 mg's (+) should be given until the patient reaches a plateau with counts. That means that counts should be in a steady range for two or three consecutive weeks before a taper begins. Once that has occurred, the taper should start, going down by no more than 5 mg's per week, and continue unless counts begin to rapidly drop. If counts begin to go down, hold off on the taper and keep the dose steady for a while.

In other words, you have to look at what the counts are doing and adjust the dose accordingly or keep it the same. That plan seemed to give the most remissions or at least, hold counts a bit longer than a steady taper without regard to what counts are doing. Of course once you get to 10 mg's, the taper becomes more about the adrenals than the counts and should be slow.

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New to all of this 2 years 2 months ago #59127

  • ytsejam02
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Wow....
That really does put my taper into context. I'm at 10mg/day now... not even 4 weeks after my event. I wouldn't classify anything I have as steady, since I've really only had 5 counts. 16 at the hospital on a Monday, 33 the next day, 87 the following Monday, 51 the following Monday, and 53 the following Friday.
There's really no reason for me to expect that last week was some sort of plateau or stabilization, as much as I want to believe that it is. As I mentioned in an earlier post, I feel pretty darn good right now, so I'm hopefully with a healthy dose of being realistic.

I guess we'll see. That certainly makes me want to give Prednisone a better shot than what we did this time around, and not jump straight into Rituxan.

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New to all of this 2 years 2 months ago #59128

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Jay, it will be interesting to see what your count is after tapering right off. If you are not getting any of the common ITP symptoms you might be best to avoid all medication. Everyone is different and one persons low count 》20 can result in mild symptoms whilst another's can result in quite serious bleeds.

As others have said don't get too hung up on the figures. Look after yourself and obviously avoid any extreme sports activity.

Only when your count drops below 10 should you become concerned and then you will require intervention.

To put things in perspective I have not had a count in double figures for over a year now and I do feel unwell and fatigued but I am still functioning reasonable well.

You also have the benefit of being young - your ITP could well be of the acute type and go away as fast as it arrived.

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New to all of this 2 years 2 months ago #59135

  • ytsejam02
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Well, I'm feeling a little less optimistic this morning. I found a few random spots of purpura. Random in that they aren't clustered like a rash. One on inside of mouth, 1 on inside of thigh, and what looks like 1 or 2 on the hairline edge of my scalp.

I go to the Hema in a few hours.

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New to all of this 2 years 2 months ago #59139

  • ytsejam02
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Did not go well.

Crashed to 10. I had to choose between spending the weekend in the hospital getting IVIG, or pumping the Prednisone to 70mg. I chose the latter. We're going slow now. He told me to expect to be on 70 for 3-4 weeks. He also doesn't believe there's much chance it'll work.

Paperwork is being submitted for Rituxan, so that that part is taken care of.

He's still of the mind that if Rituxan doesn't work, we move to splenectomy. At which point, I need to get a 2nd opinion.

I'm not nearly as depressed as I was not even 2 weeks ago, but it is depressing.

Overall, I'm still feeling pretty scared. Even just the thought of Rituxan is scary. I tested negative for any viruses like TB, or Hepatitis, so it's all very low risk. Still, it's not zero :-(

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New to all of this 2 years 2 months ago #59141

  • Sandi
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Hey Jay. Sorry about the count. I had a feeling that would happen....the taper was too fast. As far as the higher dose working, that depends on what your definition of 'work' is. Your counts will probably go up and that means that it worked. As far as staying up, only time will tell. Sometimes a longer stint on a high dose can keep them up for a while.

It will probably be a while before you have to worry about Rituxan, so just try to focus on what is going on now. ITP has ups and downs; it's just part of the process.

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New to all of this 2 years 2 months ago #59143

  • ytsejam02
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Thx Sandi.
if you don't mind my asking, have you tried Rituxan?
Part of what concerns me is that he told me he hasn't ordered a splenectomy in a long time. Yet he also told me that Rituxan is something they do quite a bit of, he has told me he commonly sees ITP, and Rituxan only has a success rate of 50-60%. If this guy thinks a splenectomy is the next safest choice after the Rituxan coin toss, wouldn't you think he'd be ordering more splenectomies? Unless people are saying NO.

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New to all of this 2 years 2 months ago #59144

  • ytsejam02
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Sandi wrote: the taper was too fast. As far as the higher dose working, that depends on what your definition of 'work' is. Your counts will probably go up and that means that it worked.


Oh, and regarding this, I will take anything that's farther north of single digits! 30 would make me happy right now.

I go back on Monday for another count to make sure the 70mg of Prednisone is doing it's job.

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New to all of this 2 years 2 months ago #59145

  • D.Mann
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Jay,
There are a lot of drugs to try before surgery.
Prednisone, Danazol, Promacta, NPlate, and more I do not know. I did Prednisone, and Rituxan. I currently on Promacta waiting on a second round of Rituxan.
You will have to look at all aspects of the drug options, cost and side effects on top of ease of use. (NPlate is an injection that US will not allow you to do yourself).

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New to all of this 2 years 2 months ago #59146

  • ytsejam02
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D.Mann wrote: Jay,
There are a lot of drugs to try before surgery.
Prednisone, Danazol, Promacta, NPlate, and more I do not know. I did Prednisone, and Rituxan. I currently on Promacta waiting on a second round of Rituxan.
You will have to look at all aspects of the drug options, cost and side effects on top of ease of use. (NPlate is an injection that US will not allow you to do yourself).


Yeah, I brought those up, or at least some of them. He considered Promacta a last resort type of treatment. Mostly because for him it hasn't been around that long and he brought up the cost of it. Didn't mention side effects...
That's why I'm currently thinking need a 2nd opinion if I get to that point.

So you take both Promacta and Rituxan? When you say second round of Rituxan, are you referring to the 2nd week (out of 4)? In which case, I would assume you'd come off of Promacta if results looks good sometime after your 4 weeks of Rituxan?

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New to all of this 2 years 2 months ago #59149

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Jay, think of splenectomy as an absolute last resort and to be avoided.

Get (stool) tested for H Pylori (infection of the gut).

The sudden withdrawal from steroids can cause the adrenal glands to shut down, hence everyone's concern.

There are loads of things for you to try first and you have responded to the first one that has been tried so that is very encouraging.

Rituxan is well worth trying as if it works it may give a lasting response. Nplate or Promacta can be very successful.

Don't lose heart - it is very early days in your ITP journey and as I said before you may go into remission.
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New to all of this 2 years 2 months ago #59150

  • Sandi
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Jay:

From the sounds of it, it doesn't seem as though this doctor is well-versed in ITP. His methods of treatment do not seem up to date. DId he really say 'order' a splenectomy? Odd term to use. "Suggest' may have been better.

Very few treatments have success rates above 60%, even splenectomy, and that success rate falls over time. As far as Rituxan goes, many people have had success with it as far as remissions. Yes, I did use Rituxan in 2003 and it gave me about 13 treatment free months. However, I was one of the unlucky few who had a bad reaction; serum sickness. Fortunately, it is a rare reaction that occurs 14 to 21 days after the first infusion. It is a horrible thing to go through, but generally goes away within 4 to 7 days. I understand your hesitancy since it is a potent drug. I'll admit that I jumped into it without much research and I never made that mistake again. At the time, it was a new treatment for ITP and had only been around since 1998 for other reasons. Prior to that, I had pretty much only used Prednisone for about 6 or 7 years whenever counts dropped. I tried Win-Rho, Danazol and Dapsone and they either didn't raise counts or I had a reaction. Those three are not used much and we didn't have as many choices back then.

Most people go down the treatment line and usually end up having success with Promacta or N-Plate. Most experienced Hematologists are familiar with and have used these drugs. They have been around a bit longer than ten years so I'm not sure how long a drug has to be around before he is comfortable using it. I have not heard of any new long-term effects other than those listed on the package inserts. It's not the best idea to use either of those after a splenectomy because the TPO's carry a risk of blood clots and splenectomy adds to that risk.
www.onclive.com/insights-archive/immune-thrombocytopenia/risk-of-thrombosis-in-patients-with-itp
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New to all of this 2 years 2 months ago #59151

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Sandi wrote: Jay:

From the sounds of it, it doesn't seem as though this doctor is well-versed in ITP. His methods of treatment do not seem up to date. DId he really say 'order' a splenectomy? Odd term to use. "Suggest' may have been better.


Totally agree - very odd or at best dated (ancient) thinking to suggest splenectomy when Jay has shown he responds well to steroids.

Jay, there are those of us who do not respond at all to the majority or in some cases refractory to all of these drugs but still would not contemplate splenectomy.

Maybe a second opinion is in order?

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New to all of this 2 years 2 months ago #59152

  • ytsejam02
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rjsmyth wrote:

Sandi wrote: Jay:

From the sounds of it, it doesn't seem as though this doctor is well-versed in ITP. His methods of treatment do not seem up to date. DId he really say 'order' a splenectomy? Odd term to use. "Suggest' may have been better.


Totally agree - very odd or at best dated (ancient) thinking to suggest splenectomy when Jay has shown he responds well to steroids.

Jay, there are those of us who do not respond at all to the majority or in some cases refractory to all of these drugs but still would not contemplate splenectomy.

Maybe a second opinion is in order?


I think so if it gets to the point where rituxan doesn't work. At the very least I'll likely see my primary Dr to start looking for 2nd opinions.

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New to all of this 2 years 2 months ago #59156

  • D.Mann
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Yeah, I brought those up, or at least some of them. He considered Promacta a last resort type of treatment. Mostly because for him it hasn't been around that long and he brought up the cost of it. Didn't mention side effects...
That's why I'm currently thinking need a 2nd opinion if I get to that point.

So you take both Promacta and Rituxan? When you say second round of Rituxan, are you referring to the 2nd week (out of 4)? In which case, I would assume you'd come off of Promacta if results looks good sometime after your 4 weeks of Rituxan?[/quote]

I did not respond at all to steroids. I did the 4 week Rituxin in December. I was slowly climbing and caught the flu. That and meds caused me to crash to 3. Hospital and IVIG got me going but I have slowly dropped from my IVIG peak. Tried a trial month of Promacta and it seems to work well. My doctor also doesn't consider it a long term option due to cost. When he can get Rituxin setup again I am going to give it a second go around. Doc said a second go within 6 months sometimes works. I had no issues with it so gonna give it a go. I think I will try Danazol next if the Rituxin fails.

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New to all of this 2 years 2 months ago #59162

  • ytsejam02
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Started my 70mg regiment of Prednisone yesterday. My random spots of purpura cleared up overnight... I'm taking that as a good sign. Either way, it's back to the hema on Monday to get poked again.

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New to all of this 2 years 2 months ago #59165

  • Sandi
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Yes, that's a very good sign. Let us know how it goes.

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New to all of this 2 years 2 months ago #59170

  • ytsejam02
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Sandi wrote: Yes, that's a very good sign. Let us know how it goes.


Oh I will :-). You guys are the only ones who understand what I'm going thru. I'm still struggling with fear. It comes and goes. This forum is my only outlet at the moment.

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