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TOPIC: New Kid Seeking Friends and Guidance

New Kid Seeking Friends and Guidance 1 year 3 weeks ago #63480

  • Oliver091117
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I am 35 years old and was just diagnosed with ITP 8 months ago with a count of 6k. I have struggled all my life with pretty severe anxiety and I have a medical phobia (great fear and mistrust of conventional Western medicine), so this has been an interesting ride.

I would really like to find friends in my area (Cincinnati Ohio) with ITP for moral support and also to potentially find another hematologist whose approach is more in synch with my personal philosophy. I do believe she is a very good and competent doctor, and is very good at what she does. But, I really really really do not like pharmaceuticals, and as I have very little bleeding at low counts (I have not noticed any bruising until I am under 10k, and even then it's not too bad), I want that to be factored in when considering treatments. I recently spoke with someone through the name exchange program who told me her doc looks at platelet count as "actual temperature versus wind chill". That sounds absolutely wonderful to me, and I would love to be working with someone like this.

The first few months after I was diagnosed I kept telling my spouse that I felt like a dog being taken to the vet-- it was scary and upsetting, and I didn't really understand why I was there. I kept being told that I was in horrible danger, and we needed to get my counts up!!! It was very difficult trying to wrap my head around that when prior to treatment I felt perfectly fine (except for the anxiety of not knowing what was going on with these mystery bruises and little red speckles), and then I felt like crap from all their stupid drugs in my system, and being told that I didn't have any choice but to follow their treatment plan.

I keep hearing from my hematologist and her nurse practitioner that ITP is "really very common", and "we see this all the time", but I also get the strong feeling that I'm the only one currently being treated in their office. When I asked if there was a support group, my doc said "No", with an incredulous look I took to mean "Why would you need a support group for this? You don't have cancer." (I acknowledge that this may not be what she was thinking, and I interpolated this due to my anxiety.)
The nurses in the infusion suite mostly seem to have little familiarity with ITP, and one even told me that at her old job she would give 4-5 NPlate injections per day, and at this office I'm the only one. I feel like they're used to looking at the CBCs of cancer patients, and counts like mine mean a VERY different thing for someone with cancer.

The first person I ever met with ITP was an administrative nurse in the ER, and she had been in remission for 6 years after being on prednisone for 3 months. I also met a patient at work (I'm an orthotic technician, and she has a leg brace) who has ITP, and she's been wonderful. She responded favorably to Rituxan, and has not needed medication in about 10 years for her ITP. The person I met through the name exchange also does not use medication to manage her ITP, and lives a relatively normal life with counts that are frequently under 20. I am so envious!!

I have been on prednisone, dexamethasone (both of which had a fair initial response, then just kept me hovering in the teens and low 20s, and wreaked havoc on my anxiety-- I can't consume caffeine because it spikes my anxiety, and steroids are exponentially worse!), Rituxan (which did absolutely nothing), Promacta (up to 75mg and still dropped into the 20s), and now trying NPlate (currently at 4mcg/kilo). The only thing that's worked fairly consistently is IVIg, and my doc's upped the dose to 1g/kilo from .4g/kilo, as the lower dose was no longer giving me a substantial boost.
She's been using the IVIg to pull up my count when it gets too low for her liking (around every 3-6 weeks). I'm extremely uncomfortable with doing this while we're trying the NPlate, as when I'm under 50k we increase the NPlate by 1mcg/kilo per week; which means the last time I had IVIg, they also increased the NPlate on the same day. I went from 26 to 212 in one week, and prior to that the highest count I'd had since diagnosis was 100 (while I was on 75mg Promacta plus IVIg). The next 2 weeks were 132, then 69, and this week it actually went up to 93. As I'm 4 weeks out from my last infusion, and my numbers fell at 6 weeks out from my previous infusion, my doc and I agree it's too soon to tell whether or not the 4mcg/kilo dosage will do the trick.

I don't like using the IVIg as a maintenance med for a number of reasons: it makes it more difficult and complicated to tell whether or not the other drugs are going to do the trick (especially the NPlate, as there is a lot more play in dosage); I'm uncomfortable with making big changes all at once-- there are usually domino effects, and it's generally not stable; each successive infusion I've had has made me feel more and more sick-- besides not being fun, missing an entire day of work (ok, that part's not too bad-- it is rather nice just putting my feet up for 5 hours and not having to go to work, but I also don't get paid when I don't go in), it tells me that my body doesn't like this. I would rather reserve using it as a rescue treatment if I start having bleeding or bruising symptoms, especially since she's already had to increase the dosage. Is it possible/likely I may stop responding to it in the future?

Other things I'm doing to manage this include:
*AIP diet-- aiplifestyle.com/what-is-autoimmune-protocol-diet/
*Network Spinal Analysis Chiropractic-- wiseworldseminars.com/network-spinal-analysis
*Acupuncture
*Feldenkrais-- futurelifenow.com/feldenkrais-method/
*avoiding foods that interfere with platelet function
*various supplements to encourage better immune system function and overall better health (a very near and dear friend of mine is the medical arts librarian at University of Cincinnati, and has helped me look up most of my supplements in the natural medicines database to check for potential contraindications).
*International Folk Dance homepages.uc.edu/~starbuem/
*Float Tank www.thinktankflotation.com/
*meditation and breathing exercises

I'm not expecting any of these things to be a magic "cure" that normalizes my platelet count. My goal is stress management, and better overall health to reduce bleeding risk, and if I get some boost in my platelet count, that would be cool. I do realize that I have an increased bleeding risk and I need to be mindful of this and make some tweaks in my lifestyle (I used to be an avid rock-climber, tree-climber, gymnast, pole-vaulter, etc), but I also do not want it to rule my life. My goal would be to be able to forget about having ITP the majority of the time!

I look forward to making friends here! Hope the day is treating you gently, wherever you are!

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New Kid Seeking Friends and Guidance 1 year 3 weeks ago #63483

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Oliver:

Welcome! We can be your support group! First of all, I'd like to say that you have a great attitude and seem to be knowledgeable. Good for you! You've done your homework. That will help tremendously. You have to be your own advocate with ITP as you are finding out. There are many Hemo's around who will support your treatment plan (or lack thereof), so look for one who will work with you.

This might help:
www.pdsa.org/resources/find-an-itp-doctor.html

Also, you might consider attending the annual ITP Conference this year which is scheduled in Cleveland. There will be a wealth of information there as well as some top ITP specialists.

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New Kid Seeking Friends and Guidance 1 year 3 weeks ago #63486

  • Oliver091117
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Thank you, Sandi!

I'm already registered for the annual ITP Conference, and very much looking forward to it! I was hoping maybe someone there could provide me with the name(s) of a hematologist(s) who may be a better fit for me. I'd feel better about finding someone through word-of-mouth, who could provide some insight into how a particular doc operates than trying to pick someone out of a list. Do you happen to know if there's a way to narrow down a search this way?

Thanks for getting back to me!

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New Kid Seeking Friends and Guidance 1 year 3 weeks ago #63488

  • Sandi
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Well, it's usually quiet here on weekends for some reason, but maybe someone will suggest someone for you soon.

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New Kid Seeking Friends and Guidance 1 year 3 weeks ago #63489

  • Oliver091117
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Thanks, Sandi!

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New Kid Seeking Friends and Guidance 1 year 3 weeks ago #63490

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Hi Oliver.

Your steroid and IVIG responses sound like row 4 in my ITP treatments table. The 'nothing but IVIG seems to work' realization is common there. The Nplate response sounds promising. As long as you don't get headaches from them, Nplate and Promacta are usually great for returning life to normal.

Might look for a doc that has experience with Fostamatinib. Experience with that could be good backup to Nplate. It's harder to justify a treatment like Cyclosporin (or Cellcept/MMF) to someone with no bleeding issues.

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New Kid Seeking Friends and Guidance 1 year 3 weeks ago #63493

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Thanks, Hal!

I did find your ITP treatments table in a previous post, but had difficulty figuring out where I fit on it, as my responses didn't quite fit the descriptions. This is helpful!

As far as headaches go, it seems (so far) that I get headaches from the NPlate when my dose is increased, but I seem to be doing ok when it stays the same from week to week. Fingers crossed this continues to be the case!

Thanks for the heads-up on Fostamatinib-- I have not yet done much reading on it, but what I'm seeing so far piques my interest. I'm pleased to see that it may be taken with or without food. Perhaps the most difficult thing about the Promacta (aside from just not wanting to be on drugs at all) was having to take it on an empty stomach. I was delighted to learn on this forum that I'm not the only one who resorted to taking in the middle of the night. My doctor ridiculed me for this and told me it wasn't necessary.

Thank you kindly for getting back to me!

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New Kid Seeking Friends and Guidance 1 year 3 weeks ago #63497

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Yes, I always took Promacta in the middle of the night, its much easier that way. I was half asleep so I'd put it out on a little plate so in the morning would know that I took it. AND at over $5000 per month, I certainly didn't want its potency to be affected by food! Sometimes I wonder about doctors- ridiculing you for taking Promacta in the middle of the night?! I get annoyed at their insensitivity.

Off topic but just watched a video of ZDogg (doctor/comedian) talk about doctors suffering from trauma, depression, PTSD/burn out and don't dare tell anyone for fear of medical board review. So I guess I can understand if they don't always say the right thing. www.youtube.com/watch?v=hvWMSkS6AD4&list=RDhvWMSkS6AD4&t=474 take care- hope you find your answers!
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New Kid Seeking Friends and Guidance 1 year 3 weeks ago #63502

  • Hal9000
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Oliver091117 wrote: Thanks, Hal!

I did find your ITP treatments table in a previous post, but had difficulty figuring out where I fit on it, as my responses didn't quite fit the descriptions. This is helpful!

Was it that the IVIG response seemed better than row 4? If so, did you ever take IVIG without any other drug?

As far as headaches go, it seems (so far) that I get headaches from the NPlate when my dose is increased, but I seem to be doing ok when it stays the same from week to week. Fingers crossed this continues to be the case!

Odds are probably good that will be the case.

Thanks for the heads-up on Fostamatinib-- I have not yet done much reading on it, but what I'm seeing so far piques my interest. I'm pleased to see that it may be taken with or without food. Perhaps the most difficult thing about the Promacta (aside from just not wanting to be on drugs at all) was having to take it on an empty stomach. I was delighted to learn on this forum that I'm not the only one who resorted to taking in the middle of the night. My doctor ridiculed me for this and told me it wasn't necessary.

Be aware that the evidence isn't fully in yet on Fostamatinib. There isn't much of a response difference between rows 2a and 4. It could be that Fostamatinib helps with 2a and not 4. When folks start to report success and failures here, hopefully it will become clear then. The population of those it helps is only 18%.

Thank you kindly for getting back to me!

No problem. ITP is in my blood and I seem to be a bit obsessed by it since.
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New Kid Seeking Friends and Guidance 1 year 3 weeks ago #63503

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poseymint wrote: Yes, I always took Promacta in the middle of the night, its much easier that way. I was half asleep so I'd put it out on a little plate so in the morning would know that I took it. AND at over $5000 per month, I certainly didn't want its potency to be affected by food! Sometimes I wonder about doctors- ridiculing you for taking Promacta in the middle of the night?! I get annoyed at their insensitivity.

I agree on not wanting to waste any of Promacta's potency to food! I also put a single pill in a separate bottle by my bedside to ensure I knew I took it .

Off topic but just watched a video of ZDogg (doctor/comedian) talk about doctors suffering from trauma, depression, PTSD/burn out and don't dare tell anyone for fear of medical board review. So I guess I can understand if they don't always say the right thing. www.youtube.com/watch?v=hvWMSkS6AD4&list=RDhvWMSkS6AD4&t=474 take care- hope you find your answers!


I try to remind myself regularly that my doc is human and I haven't the foggiest what she's dealing with outside my interactions with her, but as you said, it's easy to get annoyed (or frustrated) by her insensitivity and unwillingness to answer my questions at times. I appreciate and welcome the reminder! I'm also well aware that I'm very difficult to interact with at times (when my level of anxiety is high and I'm not able to think clearly).

I have been working with an integrative/ functional medicine practitioner in addition to my hematologist, and there are plenty of times I'm irritated with her, as well, but I don't feel like I need to hold back information from her, and I feel comfortable asking her any and all questions I may have. That's the kind of relationship I'm trying to find with my hematologist.

Again, thank you kindly!

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New Kid Seeking Friends and Guidance 1 year 3 weeks ago #63504

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Hal9000 wrote:

Oliver091117 wrote: Thanks, Hal!

I did find your ITP treatments table in a previous post, but had difficulty figuring out where I fit on it, as my responses didn't quite fit the descriptions. This is helpful!

Was it that the IVIG response seemed better than row 4? If so, did you ever take IVIG without any other drug?


Ah, yes! The only time I've taken IVIg without any other drug (for a while) was when I stopped Promacta (counts are 1 week apart):
26 (1g/kg IVIg)
69
67 (1mcg/kg NPlate)
49 (1mcg/kg NPlate)
41 (2mcg/kg NPlate)
42 (3mcg/kg NPlate)
26 (4mcg/kg NPlate; 1g/kg IVIg)

Starting the NPlate just 2 weeks out from the IVIg clouds things a bit, but it still seems to me that I got at least 2 weeks of somewhat elevated counts from the IVIg alone(?)

I love that you're doing this, by the way! This is pretty fascinating stuff, yes? When I'm not freaking out about this or that I marvel at how cool the body is, and enjoy the ride!

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New Kid Seeking Friends and Guidance 1 year 3 weeks ago #63505

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I can be very anxious too and it really helps to communicate here with other people going through similar problems. Sometimes I think the doctors have no idea how hard it can be to manage these treatments, weekly doctor visits and medications like steroids that cause terrible side effects like in my case manic episodes, insomnia, as well as fatigue, muscle pain, headaches when withdrawing.
I hope you are able to find a new hematologist who can be more emphathetic.
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New Kid Seeking Friends and Guidance 1 year 3 weeks ago #63522

  • Hal9000
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Oliver091117 wrote: ...
Ah, yes! The only time I've taken IVIg without any other drug (for a while) was when I stopped Promacta (counts are 1 week apart):
26 (1g/kg IVIg)
69
67 (1mcg/kg NPlate)
49 (1mcg/kg NPlate)
41 (2mcg/kg NPlate)
42 (3mcg/kg NPlate)
26 (4mcg/kg NPlate; 1g/kg IVIg)

Starting the NPlate just 2 weeks out from the IVIg clouds things a bit, but it still seems to me that I got at least 2 weeks of somewhat elevated counts from the IVIg alone(?)

I love that you're doing this, by the way! This is pretty fascinating stuff, yes? When I'm not freaking out about this or that I marvel at how cool the body is, and enjoy the ride!

Ok, I can see why this response doesn't fit well with the table. Interesting. I looked through my PDSA user report notes for a similar response from someone else. Unfortunately I couldn't find anything very close. Detailed count lists are not often provided. I have some ideas about what might be going on, but let me clear up a few loose ends first.
- How did your steroid and/or dex response go? How high was the initial response and how long to fall into 10-20s?
- When you went from 50 to 75mg of Promacta, did counts bump up a bit for the first week on 75mg?
- Is it possible you've had low counts or easy bruising for awhile, before ITP diagnoses?

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New Kid Seeking Friends and Guidance 1 year 3 weeks ago #63529

  • Oliver091117
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Hal,
I just sent you a private message regarding your last post.
Thanks!

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New Kid Seeking Friends and Guidance 1 year 3 weeks ago #63530

  • Hal9000
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Oh my. Opened my inbox and noticed several folks have sent me Private Messages. How is one to know when one gets a PM?
I'm using Chrome browser, perhaps that is the issue?

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New Kid Seeking Friends and Guidance 1 year 3 weeks ago #63534

  • Oliver091117
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Hmm... I'll re-enter my data into a different document I can share more easily. There's a bit of a learning curve to all of this! I can't get to it tonight, but maybe tomorrow night.

As for your last question, I did have petechiae and bruising 3 months prior to diagnosis-- it took me a while to get the initial appointment to a PCP that landed me in hem/hospital the same day.

I also realized that although my last infusion was when I stopped Promacta, I stopped taking it the day *after* I had the infusion. Is it possible that having been on 75mg Promacta for 5 weeks prior to the IVIg got me the 2 week boost in count?

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New Kid Seeking Friends and Guidance 1 year 2 weeks ago #63542

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Hal9000 wrote: Oh my. Opened my inbox and noticed several folks have sent me Private Messages. How is one to know when one gets a PM?
I'm using Chrome browser, perhaps that is the issue?


I have no idea! Is there a setting somewhere to get alerts? In any case, I just sent you another private message.

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New Kid Seeking Friends and Guidance 1 year 2 weeks ago #63543

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Thanks for the detailed info Oliver. It will serve as a great comprehensive baseline. I noticed a few things.

You definitely respond to Promacta. The problem just seems to be it is not potent enough. What was it, about a five week response with 75mg Promacta and a one day 1g/kg IVIG treatment? For the IVIG treatment you mentioned it does look like 75mg Promacta had some amount of influence initially.

As for steroid response, looks like a big 'no go' there. The data even suggests platelet infusions worked better than steroids. Not sure why the doc wanted to do a Dex pulse after the Prednisone fail.

On a side note, they stuffed me full with platelet infusions for my appendectomy and a week later had a 134 count with no other ITP treatment. No steroids, no IVIG, nothing. How does that happen? My baseline is 12. I'm thinking my good IVIG response, good Promacta response, and odd platelet transfusion response are all related: row 3 antibodies.

What I've been wondering is if a row 3 and row 4 combination is at work in your case. That this combination could give one an extended IVIG response that is more of a 'partial' (60s) response instead of a 'full' response (over 150) count. Also with this combination it would be reasonable to expect an Nplate response that is an average of the effects of the two rows. Maybe a 1 dose from row 3 and a 8 dose from row 4. The average being (1+8)/2= 4.5 dose. It will be interesting to see what Nplate dose shakes out over the next few weeks.

Without a doubt Promacta or Nplate can make 'quality of life' much better. The Nplate response looks promising. Perhaps Fostamatinib can be something to try one day. If it helps, I wonder if a normal dose would keep a 3/4 combination around 50, or, that low dose Fostamatinib and then adding in Nplate or even Promacta - which could be adjusted to give any desired count. Reference the comments in this video on combination treatments with TPOs at time marker 2:36.
www.youtube.com/watch?v=DBJ5SswU8tI&app=desktop

Hope this helps.

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New Kid Seeking Friends and Guidance 1 year 2 weeks ago #63547

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Hal9000 wrote: What I've been wondering is if a row 3 and row 4 combination is at work in your case. That this combination could give one an extended IVIG response that is more of a 'partial' (60s) response instead of a 'full' response (over 150) count. Also with this combination it would be reasonable to expect an Nplate response that is an average of the effects of the two rows. Maybe a 1 dose from row 3 and a 8 dose from row 4. The average being (1+8)/2= 4.5 dose. It will be interesting to see what Nplate dose shakes out over the next few weeks.


I'm still having difficulty reading your chart, and I would like to better understand. What do you mean by "a 1 dose from row 3 and an 8 dose from row 4"?

I agree it will be interesting to see how I do with the NPlate over the next few weeks. I'm feeling a bit punky from my dose increase a few days ago. Headache set in as I was going to bed last night, and last couple days feeling very stiff/achy/leaden.

Hope the weekend is treating you well!

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New Kid Seeking Friends and Guidance 1 year 2 weeks ago #63548

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Just a moment. Just a moment.
HAL has made an error. He left off Nplate to Promacta conversions.

Rumor has it that the following Nplate doses and Promacta doses are roughly equivalent.
Promacta . . Nplate
12.5mg . . . 1 micro gram per kg of body weight
25 . . . . . . . . 2
50 . . . . . . . . 4
75 . . . . . . . . 6
As you can see, because Nplate doses range from 1 to 10, Nplate can induce a more significant platelet response. Also, Promacta is metabolized by the liver while Nplate is not - hence the need for only a weekly Nplate injection. It dissipates slowly much like human TPO. Apparently higher doses of Promacta are not available/recommended due to the increased long term liver load.

From what I've seen, an Nplate dose above 6 would be expected for a row 4 response. An 8 would be typical. For row 3 an Nplate dose less than 2 would be expected. A 1 would be typical.

If you're just now getting headaches from Nplate that could be a good sign. A sign that your counts are now up. For me, I start to get headache like feelings around 90 and above. A low dose Aspirin does wonders for me, your mileage may vary. If I wake up with a headache, one normal Excedrin Aspirin does the trick.

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New Kid Seeking Friends and Guidance 1 year 2 weeks ago #63552

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Not to be disagreeable Hal, we all are very different around here for sure! But my Nplate headaches do not correspond with high counts. Week ago last my counts were 24K and woke up with a bad Nplate headache. Its always across my forehead and happens only one morning per week upon waking up.
Headache was quickly relieved with coffee which leads me to believe its vascular as I think caffeine is a vascular constrictor. This week my counts were 95K and no headache at all. Under my doctor's advice, I wouldn't take aspirin as it inhibits platelet aggregation. Unless of course my counts were very high like above 300. Good luck Oliver with finding your answers!

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New Kid Seeking Friends and Guidance 1 year 2 weeks ago #63553

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poseymint wrote: Not to be disagreeable Hal, we all are very different around here for sure! But my Nplate headaches do not correspond with high counts. Week ago last my counts were 24K and woke up with a bad Nplate headache. Its always across my forehead and happens only one morning per week upon waking up.
Headache was quickly relieved with coffee which leads me to believe its vascular as I think caffeine is a vascular constrictor. This week my counts were 95K and no headache at all. Under my doctor's advice, I wouldn't take aspirin as it inhibits platelet aggregation. Unless of course my counts were very high like above 300. Good luck Oliver with finding your answers!


I had not associated my NPlate headaches with platelet count either, but found it interesting that Hal may notice a correlation. For me, it seems to be whenever they increase my dose. If the dose remains the same week to week I have not gotten a headache. Granted, I have not been on NPlate very long at this point (9 weeks), but long enough to notice a trend.

Unfortunately, I am avoiding caffeine, as it exacerbates my anxiety, and I've noticed it also upsets my tummy, and makes menstrual cramps worse. I did find it very helpful when I was getting off steroids, though-- the ONLY thing that took care of my headaches was matcha! I'm sticking to acetaminophen for now, as it's the only OTC analgesic I know of that doesn't interfere with platelet aggregation. Though, it frequently doesn't do the trick :(

I was a little puzzled by Hal's suggestion of Excedrin aspirin as well, but now I am wondering if he mean Excedrin WITHOUT aspirin?? That would just be acetaminophen plus caffeine.

I'm keeping my eyes peeled for a caffeine-free herbal pain-relief remedy that would be safe to take with ITP. The only ones I've come across so far are also emmenagogues (substances that stimulate or increase menstrual flow), so I've decided to steer clear.

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New Kid Seeking Friends and Guidance 1 year 2 weeks ago #63555

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Yes, I also have more side effects from Nplate when dose is increased. I occasionally have insomnia from it the night after an injection, but only with a dose increase. I've noticed the side effects do go away, as you mentioned, after a week or two on the new dose. But of course a lower dose is better. I'm on 408mcg which is 5mcg per kg for my body weight. I'm on a lower dose than I was in 2016 (495mcg)- I've also lost weight since then in hopes to reduce the dose, not sure if the weight loss worked. It seemed to be due to changes in autoimmune activity- platelets went high, dose was reduced, then plates stayed around 50 so I've been on the lower dose since then. Some people achieve remission on these drugs.
Good you are off caffeine! Yes coffee will really increase anxiety for sure! My neurologist wants me to quit coffee as I also have migraines. He says caffeine can help headaches occasionally but over time will make them worse. I am working on cutting back but haven't quit yet.

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New Kid Seeking Friends and Guidance 1 year 2 weeks ago #63556

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poseymint wrote: My neurologist wants me to quit coffee as I also have migraines. He says caffeine can help headaches occasionally but over time will make them worse. I am working on cutting back but haven't quit yet.


Indeed! This is what I noticed when I got off steroids. Initially, matcha helped knock out my headaches, but then I also kept having them, and they stopped responding to the matcha and also acetaminophen. Once I bit the bullet and got through a few headaches without resorting to matcha, I've been relatively good since!

It can be difficult to get off caffeine, but totally worth it. I'd been basically caffeine-free since 2009 to varying degrees due to anxiety. (Made a bigger difference to me than any of the antidepressants I'd tried!) Most of that time I would allow myself some occasional decaf and chocolate, but there were 2 or 3 years in there when I also completely cut out decaf and chocolate.

Hang in there, and best of luck with your migraines!

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New Kid Seeking Friends and Guidance 1 year 2 weeks ago #63561

  • mrsb04
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Poseymint is correct we are all different. I never once had a headache when on Romiplostim, (N Plate).
The only problem I ever had was developing unexplained pain in the left clavicular area after about 6 months of using it.
Several several tests for this pain revealed nothing untoward. GP surmised it must be a side effect. She was probably right because when I stopped Romiplostim the pain disappeared. I never felt 100% on it. Nothing I could put my finger on but after stopping it within a month I realised that I'd spent the past year firing on about 3.5 cylinders not all 4. Maybe due to constantly fluctuating counts.

Now on Eltrombopag (Promacta) and not suffering any side effects to my knowledge. Plus platelet count doesn't seem to fluctuate dramatically.


Hal.. be interested to know where you found this snippet.
Rumor has it that the following Nplate doses and Promacta doses are roughly equivalent.
Promacta . . Nplate
12.5mg . . . 1 micro gram per kg of body weight
25 . . . . . . . . 2
50 . . . . . . . . 4
75 . . . . . . . . 6
The following user(s) said Thank You: poseymint

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New Kid Seeking Friends and Guidance 1 year 2 weeks ago #63563

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Hal9000 wrote: From what I've seen, an Nplate dose above 6 would be expected for a row 4 response. An 8 would be typical. For row 3 an Nplate dose less than 2 would be expected. A 1 would be typical.


Ah! It took me a few times of coming back and reading this to get it-- I finally understand!

I also understand that my response may not be "typical" and I have to wait and see what happens.

Out of curiosity, though, do people with row 3 and 4 responses tend to continue to need weekly injections, or do they sometimes need them less frequently as time goes on? Or, would needing less frequent injections reflect a shift in antibodies? I think I remember you saying that achieving remission on NPlate usually occurs in rows 1 & 2(?)

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New Kid Seeking Friends and Guidance 1 year 2 weeks ago #63581

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poseymint wrote: Not to be disagreeable Hal, we all are very different around here for sure! But my Nplate headaches do not correspond with high counts...

Yes. It seems as though there are two groups though. One group seems to get headaches from high counts and the other seems to get headaches from the drug itself - either Nplate or Promacta. For the first, wacky or highly reactive platelets seems to be the mechanism. Aspirin seems to very effective in this case and could prevent blood clots induced by the drug. For the second, I wonder if the drug crossing the brain / blood barrier is the issue. Where vein constriction from caffeine consumption would limit drug crossing and relive headaches in this case.

mrsb04 wrote: ...
Hal.. be interested to know where you found this snippet.
Rumor has it that the following Nplate doses and Promacta doses are roughly equivalent.
Promacta . . Nplate
12.5mg . . . 1 micro gram per kg of body weight
25 . . . . . . . . 2
50 . . . . . . . . 4
75 . . . . . . . . 6

It's just a rumor, LOL. I wish I had better, more concrete info. It's just what I've put together over time reading PDSA forum. I think it was Posey that originally gave me one association and then extrapolated the rest. Since pills aren't adjusted for body weight, obviously there can be a lot of variation no matter what the actual normative equivalences are.

Oliver091117 wrote: ...
Out of curiosity, though, do people with row 3 and 4 responses tend to continue to need weekly injections, or do they sometimes need them less frequently as time goes on?

Yes, row 3 and 4 folks continue to need treatment. It seems to be static over time.

Or, would needing less frequent injections reflect a shift in antibodies?

On dose changes. Studies suggest that once one has an ITP antibody it doesn't go away. It just goes into better or worse regulation or balance.

I think I remember you saying that achieving remission on NPlate usually occurs in rows 1 & 2(?)

Going into partial remission or full remission with Nplate (or Promacta) treatments alone is almost exclusive to row 2. It occurs in row 1 too, but is rare. That is to say, I've never read a PDSA forum report of this sort of thing happening in row 3 or row 4. Similarly, Rituxan never helps row 3 & 4 either.

In your readings you may have read about B cells and T cells. Note that T cells mature/ripen in the Thymus over an extended period of time, several weeks as I recall. If one has a T cell ITP problem (row 3 & 4), Rituxan killing off B cells isn't going to resolve the issue. On the other hand, if one has a B cell ITP problem (row 1), Rituxan can be effective.

If one studies the various ITP drugs, I think you will find that MMF, Cyclosporine A, and Danazol are the only ones that can affect T cells. Nplate and Promacta are known to help B cell regulation/balance - but only on the margin (very little). Hence a reason why these drugs can sometimes help in row 1 when the dis-regulation is only slight.

On a different but related front, Celiac and I think Rheumatoid Arthritis and MS are T cell mediated disease. It would be interesting to see a list of how the various diseases divide between T and B cell mediated.

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New Kid Seeking Friends and Guidance 11 months 1 week ago #63826

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How are things Oliver? Have you stabilized on Nplate?

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New Kid Seeking Friends and Guidance 11 months 1 week ago #63828

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Hal- New information for me that goes along with your question about B and T cells. I'm thought now to have Primary Sjogrens syndrome which is known to be a B-cell attack on the salivary glands and also systemic, can affect major organs etc. It comes with a higher rate (up to 40x higher than normal) of B-cell non Hodgkins lymphoma possibly because of the overly-activated B-cells. Oddly immune suppressants like Cell cept don't work to alleviate the dry mouth symptoms, and can make things worse as they increase the risk of lymphoma. Rituxin and IVig are used. Rituxin didn't work for my ITP so I've always thought that maybe it was a T cell issue.

Also interesting, my rheumatologist explained that there is a Lupus driven form of ITP. It is an attack on the bone marrow. And in that case all of the numbers will be off- low red cells, low whites and low plates. And when they find the right drug to suppress the attack, in theory all of the numbers should normalize. In my case its only the platelets that are low so it is thought that my ITP is just going along with Sjogrens and whatever else I may have, so fixing one does not necessarily fix the other.

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New Kid Seeking Friends and Guidance 11 months 1 week ago #63833

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Hal9000 wrote: How are things Oliver? Have you stabilized on Nplate?

Hi Hal,
Thanks for checking in on me. I've been rather depressed the past few weeks and drawing inward. I've been feeling very angry about monitoring my platelet count and all the attention being focused on this stupid number.

I've been sending out regular update e-mails to a group of friends and family. It started as a small contingency of retired friends I called upon to go with me to my appointments to take some of the burden off my spouse, but it's grown as folks have expressed interest in keeping up to date with my "adventure".

Long story short, three weeks ago I decided that I wasn't going to report my weekly count anymore because I feel so strongly about not associating my level of well-being with a number. I was still freaking out, though, because I still knew the numbers, so last week I asked the infusion nurse not to tell me. I was confused by my NPlate dose (the dose didn't correspond with my gaining 2 pounds and staying at the same dosage I'd been on, nor did it correspond with a 1mcg/kg dose increase), so I ended up looking it up anyway.

I have a medical phobia, and this whole experience has been very trying for me because I feel stuck and at the mercy of people who don't "get" me. I have such horrible anxiety about having to go to a medical office that I get diarrhea every time I have to go there (which with the NPlate is weekly-- once, twice in one day), and the anxiety lasts for days before and after my weekly appointment. The only reason I'm concerned about the numbers at all is because I worry about "what they're going to do to me" based on the numbers. I so desperately want to be working with a hem who takes into account my symptoms, and not just my numbers. I have an appointment with a new hem next week Monday and have my fingers crossed that he'll be a better fit for me.

I feel so ridiculously and unbearably alone in this because I feel like nobody can fathom why I wouldn't want to get my count up, or find a drug that gets and keeps my count up, or that because I feel this way I must be naive or in denial or something, and I must need helpful suggestions on how to change my perspective. I'm well aware of the risks. All I want/need is to hear "yeah, this sucks, and you have every right to feel the way you feel" (no "and..."s or "but..."s). And a good hug.
It's actually upsetting to me when my "red speckles" go away and I bruise/bleed even less than I did prior to ITP. Even WITH ITP I bruise less easily than my spouse does! I just want to be left alone. At the beginning of January I slipped on some ice and took a hard fall down the concrete stairs in front of our house and didn't sustain any bruising with a count of 11. And still, my hem insists that we need to keep my count UP! between 50-200. She says I "don't have a choice".

I want to be clear that I'm NOT upset with you! I really am grateful for the friendship you've shown me, and thank you so kindly for checking in on me! I do find your chart fascinating, and I'm very intrigued by the science behind it. I want to learn more!! I'm just struggling and needed to vent.

I sincerely hope you are well, and that you have a lovely Fourth of July!

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