Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC: Long time no see!

Long time no see! 2 months 1 day ago #68736

  • momto3boys
  • Offline
  • Posts: 408
  • Karma: 2
  • Thank you received: 86
Hello fellow ITP-ers. I've been MIA for pretty much the entire school year. My oldest son is a senior, and the college application process has had us in a frenzy of activity.

Obviously, now with the coronavirus and things closing down, we've had some time at home to recover somewhat.
I'm still on good 'ol Promacta, and I've been very lazy about getting regular bloodwork. Was alternating 25/50 Promacta for a while and at one point my count got too high (above 100), so then I backed it down to 25 daily. Last labs I ended up with clumping and no plt count, but I'm not planning on going out and about for any lab work any time in the near future! Just trying to isolate and ride things out like everyone else.

Hope you are all doing well!

Please Log in or Create an account to join the conversation.

Long time no see! 1 month 3 weeks ago #68785

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1651
  • Karma: 10
  • Thank you received: 238
Ha, it's mom23boys! MIA is right. You know, every time someone posts a question about getting their spleen out, I think about your past allegiance to the topic. Your story is pretty compelling.

A 25/50 split and solid 25 sure sounds better than the 50/75 split I remember. You must be doing something right. What's your secret?

I recently stumbled on your earlier post on Sutimlimab aka BIVV009. Some think the complement pathway is the key to resolution of chronic ITP. I attended the PDSA conference in DC this past summer. One presenter seemed to indicate the complement pathway was more about destruction by the liver. I really don't know much about the topic. Do you know of anything new on this front?
pdsa.org/discussion-group/search.html?query=BIVV009&searchdate=all&order=dec&childforums=1&limit=30&start=0

Please Log in or Create an account to join the conversation.

Long time no see! 1 month 3 weeks ago #68830

  • momto3boys
  • Offline
  • Posts: 408
  • Karma: 2
  • Thank you received: 86
I definitely long to have my spleen back, especially with the current situation!
I ended up not going in on that particular clinical trial. It was a Phase I, and family members weren't keen on my participation :)
I feel like I read about the results of the trial somewhere online (pubmed?) and that the outcomes were good, but not long term. I can't recall at the moment.

Regarding dosages, I have no secret. I haven't been getting much lab work done at all. I'm not having symptoms of crazy low counts, but I'm bleeding enough to assume that they aren't too high (I got headaches and other weird symptoms when they went too high a few months back).
I'm not planning on stepping into a lab any time in the near future (We'll be sheltering in place for a while, I assume). I'm just staying on my current promacta low of 25 daily and doing nothing else!

An interesting aside about the relationship between anemia and platelet count. My counts had been relatively high for me when I was quite anemic. My hematologist mentioned that often anemia will lead to improved platelet numbers as a side effect. My anemia symptoms were annoying enough that I opted for intravenous iron infusions a few months ago. Sure enough, my counts tanked quite a bit after I did those. Got a low count of 7k that I ended bumping up with a tiny bit of Prednisone. Sigh. So I think I'll just let myself get nice and anemic again so that I can ignore the ITP more. For me, it seems to be a definite catch 22.

I hope you've been having good luck with your treatments in the interim!

Please Log in or Create an account to join the conversation.

Long time no see! 1 month 1 week ago #68894

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1651
  • Karma: 10
  • Thank you received: 238
Hmmm, don't know what to make of that anemia / count inverse relationship. I guess the anemia went away with the iron treatments?

Tried to read through old PDSA posts on 'anemia'. LOL, a very common word here on the forum I might add. Best I could come up with this comment by Sandi. Sounds like she and your doctor agree on the subject.
"Autoimmune Diseases"
pdsa.org/discussion-group/6-general-itp-discussion/6367-autoimmune-diseases.html#6375

I wonder if Sandi was referring to user 'Dru'. She was really sensitive to just about everything, including Rituxan. Speaking of Rituxan, have you given it any thought lately?

Just thinking out loud. I got this really strange idea recently about which steroid responders do, and which do not, respond to Rituxan. The thought is that those that respond to Rituxan have Lupus as a potential future co-morbidity, and, those that do not have some other auto immune condition(s) as a potential future co-morbidity. Need to do research on it. Obviously, there are lots of other concurrent auto immune conditions reported on this forum.

Please Log in or Create an account to join the conversation.

Long time no see! 1 month 1 week ago #68895

  • mrsb04
  • Away
  • Diagnosis of ITP in 2014. Ex renal specialist nurse retiring in 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
  • Posts: 1467
  • Karma: 7
  • Thank you received: 374
The following user(s) said Thank You: momto3boys, Hal9000, ImPatient

Please Log in or Create an account to join the conversation.

Long time no see! 1 month 1 week ago #68918

  • ImPatient
  • Offline
  • Posts: 66
  • Thank you received: 15
Hi Momto3boys. I'm somewhat new here, I got severe thrombocytopenia at the end of last year. Anyway, I read your post My Promacta Journey and saw that you had had hormonal problems too? I also read you wrote that your bone pain was due to inflammation. So was there any damage from that? Our pain might be something different, but curious anyway, maybe I can draw some conclusions for myself. I started taking Promacta a couple months ago, had almost no period, severe spine pain and joint cracking since then ( I posted that in the Womens Forum). The doctor couldn't tell me why this was happening. I also read your anemia improved your platelet counts, interesting, I'm a bit low on ferritin too and my counts dropped when I started taking iron. But not significantly, might've been coincidence.

Please Log in or Create an account to join the conversation.

Long time no see! 1 month 6 days ago #68929

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1651
  • Karma: 10
  • Thank you received: 238
Thanks for those links Anne. If I've got it right, those that don't have ITP can have significant count fluctuations with iron anemia. The fluctuations are due to platelet production, yes?

Now I am wondering if the very small variations in my counts I do see in lab tests are due to my iron status. Since I believe I have a platelet production problem (antibodies to TPO), I think that could follow. I guess I need to figure out which foods I eat have a lot of iron in them. Normalize the amount consumed, then see if counts have even less variation.

Before reading these links, I was wondering if iron was doing something in the liver - which is where TPO is primarily produced at.

Please Log in or Create an account to join the conversation.

Long time no see! 1 month 4 days ago #68938

  • momto3boys
  • Offline
  • Posts: 408
  • Karma: 2
  • Thank you received: 86
Thank you so much for the links Anne! Some interesting reading for me on the topic.

Please Log in or Create an account to join the conversation.

Long time no see! 1 month 4 days ago #68939

  • momto3boys
  • Offline
  • Posts: 408
  • Karma: 2
  • Thank you received: 86

ImPatient wrote: Hi Momto3boys. I'm somewhat new here, I got severe thrombocytopenia at the end of last year. Anyway, I read your post My Promacta Journey and saw that you had had hormonal problems too? I also read you wrote that your bone pain was due to inflammation. So was there any damage from that? Our pain might be something different, but curious anyway, maybe I can draw some conclusions for myself. I started taking Promacta a couple months ago, had almost no period, severe spine pain and joint cracking since then ( I posted that in the Womens Forum). The doctor couldn't tell me why this was happening. I also read your anemia improved your platelet counts, interesting, I'm a bit low on ferritin too and my counts dropped when I started taking iron. But not significantly, might've been coincidence.

Hello ImPatient! My mild bone aches and pains were transitory and occurred when I was on more Promacta if I am recalling correctly. My hematologist gave some advice at the time about things I could try to alleviate it, but then it stopped being an issue, so I never really tried any of the suggestions he gave me. I'm unaware of any long term damage caused by the bout of pain that I had. I've had no trouble with any pain recently while I've been on my consistent Promacta dose of 25, so I can't give you any practical tips on managing that.

My cycle has definitely been out of whack (skipped two months a while back, and this occurred while I was quite anemic, so I was pleased about that), but that probably has more to do with me being in my mid-40s than anything else!

The links that mrsb04 posted look really good on the topic of the inverse relationship between anemia and platelet count. Probably not a coincidence for you either. It was very clear to me that my count drops coincided with my IV iron infusions. I would think that oral iron supplementation (being a MUCH slower, gradual process) could produce an effect on counts that might not be quite as bad of a drop as the one I got! Good luck trying to balance the both. I've given up for the moment on doing anything about the anemia because I really don't want to do anything new with my ITP during a pandemic!
The following user(s) said Thank You: ImPatient

Please Log in or Create an account to join the conversation.

Long time no see! 1 month 4 days ago #68940

  • momto3boys
  • Offline
  • Posts: 408
  • Karma: 2
  • Thank you received: 86

Hal9000 wrote: Hmmm, don't know what to make of that anemia / count inverse relationship. I guess the anemia went away with the iron treatments?

Anne's articles seem to go along with what I experienced. The anemia did not go away (I did only the first two infusions, then cancelled my remaining appointments because my platelets tanked and it wasn't worth it to fix the anemia and make the ITP problem worse), so I'm assuming I'm still anemic (and likely trending ever more anemic with monthly bleeds)

Hal9000 wrote: I wonder if Sandi was referring to user 'Dru'. She was really sensitive to just about everything, including Rituxan. Speaking of Rituxan, have you given it any thought lately?

Just thinking out loud. I got this really strange idea recently about which steroid responders do, and which do not, respond to Rituxan. The thought is that those that respond to Rituxan have Lupus as a potential future co-morbidity, and, those that do not have some other auto immune condition(s) as a potential future co-morbidity. Need to do research on it. Obviously, there are lots of other concurrent auto immune conditions reported on this forum.


Definitely not on my radar now or any time in the near future. Being asplenic, I have no desire to further crap out my immune system in the middle of a pandemic! I'm feeling immunocompromised enough as it is without messing with my B cells. If my hematologist ever talks about rituxan (we've not talked about it as a good option for me thus far), I'll be sure to update you here.
The following user(s) said Thank You: mrsb04

Please Log in or Create an account to join the conversation.

Long time no see! 1 month 3 days ago #68942

  • ImPatient
  • Offline
  • Posts: 66
  • Thank you received: 15
Thanks Momto3boys!
I'll see if the pain stays, I also made an appointment with the gynecologist. I'm also 40, so maaaybe it has to do with that, but I'd be surprised as this never happened before. Good point about not trying anything new during the pandemic. My hematologist said I'm not in the risk group, but I read any infections up to one year after taking cortisone can be bad and I also have trouble breathing and coughing since I was on NPlate... They started opening schools and shops here, but it seems some scientists aren't sure this was a good idea...

Please Log in or Create an account to join the conversation.

Long time no see! 1 month 2 hours ago #68953

  • mrsb04
  • Away
  • Diagnosis of ITP in 2014. Ex renal specialist nurse retiring in 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
  • Posts: 1467
  • Karma: 7
  • Thank you received: 374
It never entered my head about a correlation between anaemia and platelet count until Mom mentioned it which is when I went searching for articles.
Interestingly last month my Hb was the lowest it has ever been at 120, not anaemic per se but towards the lower level of normal (115-165).
Haemo said I wonder why that has dropped to which I replied probably due to the horrendous bruising from breaking both wrists 10 days ago or possibly because I gave up red meat completely a couple of months ago after watching The Game Changers' and am eating a much more plant based diet.
She ordered a Ferritin along with my routine monthly bloods for April (UK protocol is monthly bloods for Eltrombopag patients) and lo and behold my Ferritin level is 26 which is bordering on deficient (10-420).
My platelet count is 82 the highest it has been for 18 months (apart from 2 steroid boosts for crashes.) I feel the fittest I have in a long time, am down to 1mg of Pred 3 days a week and have no anaemia related symptoms (Hb now 123). Haemo asked if I would like some iron supplements. I declined her offer and said I'd retest in a few months.
The following user(s) said Thank You: Hal9000

Please Log in or Create an account to join the conversation.

  • Page:
  • 1

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo