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20 Apr 2022 10:59
  • Luvmycat
  • Luvmycat
No, I don't mean using the Moderna booster as treatment BUT what I do mean is the technology.  I'm certainly no scientist or researcher, but thought that maybe there is something to this worth investigating. They are researching the mRNA technology for other autoimmune diseases and even cancer. I am fwding the info in my post to a dr at Cornell that I have had contact with.
19 Apr 2022 14:29
  • MelA
  • MelA
starlette - great to hear you are doing so well!!
When you have time let us know when the baby arrives!
19 Apr 2022 14:15
  • MelA
  • MelA
Do you mean having the moderna booster as a treatment for ITP?
19 Apr 2022 14:09
  • MelA
  • MelA
RR01 - I can't recall if you have symptoms while in the 25k range.  

Years ago when my ITP came out of its "remission" (not normal counts) and hit the gutter my hematologist reached for her prescription pad and I told her point blank I would NOT take prednisone & look like the Pillsbury Dough Boy for our son's wedding, the dress I would wear would go nicely with the bruises.   She then had her office call to see if insurance would cover WinRho because there was no way I was taking prednisone - and thankfully it was covered, and thankfully she respected me enough to check (but she knew I was serious and would have a low count & bruises and not take pred).
19 Apr 2022 10:31
  • RR01
  • RR01
I had ivig done for 5 days - 20 ml/mg per day - saw an increase and then after a week it dropped down to the usual 25000 range . I am really tired of all these trial and error options , now my doctor wants me to try promacta . Has anyone been on promacta for years like how long do we need to take that - life long ? My insurance doesn't cover N Plate or Rituximab - I don't want to try either of them though .
18 Apr 2022 17:43
  • starlette5
  • starlette5
I’m currently 8 months pregnant :) 
we got pregnant first try! Everything with the pregnancy has been great so far; they are just watching my count extra carefully. 
16 Apr 2022 16:45
  • MelA
  • MelA
WeenM - when you were weaning off pred how did you do it?  Being on it as long as you were did you do it slowly?  What was you count when you started to wean off it.  Prednisone might do the trick but it is nasty. 
16 Apr 2022 13:24
  • Luvmycat
  • Luvmycat
Hi All....

My husband got diagnosed with ITP 20+ yrs ago.  He does not treat unless he has to have some type of procedure, then it's IvIg, dexamethasone & Ativan to counteract the dexa.  The Ativan helps tremendously.  His platelets are normally in the low 20's to mid 30's.  I went into his test results for the past six years to get a history.

Now, the shocking part.  He got the Moderna booster on 11/8/21. He had an appt with his hema on 11/18/21.  His platelet count on that date was 96k!!!!  We were shocked.  We don't know what they are now as he hasn't had blood work.

I just felt the need to post this information altho we don't have an explanation for it. My layman's reasoning is that the vaccine somehow distracted his immune system, therefore, allowing his platelets to live instead of being destroyed.  But I am wondering if there is something to this as far as ITP treatment.
14 Apr 2022 18:53
  • stateofdesign
  • stateofdesign
Hal, 

This is one heck of a conversation! Thank you for all of your posting & sharing. Interestingly, I had 8-9 years of intense itching on my shins and occasionally on my forearms. No doctor or dermatologist could ever tell me what it was. I had a biopsy and still no luck on diagnosis

I was diagnosed with ITP ~17 months ago. As soon as I started steroids (prednisone), the itching went away. I've only been off of it 2 or 3 periods of time during my diagnosis, and inevitably the itching comes back. I get a bag of steroids when I'm given IVIG to rescue me, and then itching subsides again. Wondering if you ever found a connection? 

Hope you've found ITP relief with Promacta. Unfortunately, I've been completely treatment resistant, including with Promacta.

There's so much good stuff you posted that I'm going to dig into tonight. Thanks again for sharing. 
14 Apr 2022 18:41
  • VVeenM
  • VVeenM
I had no side effects from
The two IVIG treatments I had. They increased my platelets but only temporarily. For some I think it lasts longer. I’m on Promacta now in the early stages.
14 Apr 2022 16:09
  • VVeenM
  • VVeenM
This is wonderful advice- thank you so much!
14 Apr 2022 16:01
  • VVeenM
  • VVeenM
I had been on prednisone for my ITP for nearly a year right after diagnosis. Can’t recall my highest dose now, maybe 60 mlg. Anyway it kept my platelets in the 150-200 range so it was wonderful for me. I already knew I handled Prednisone well because I had been on and off it for years for Ulcerative Colitis many years before. I had no side effects actually, very fortunate. Doc said I had to get off it, I was the one who practically begged him to leave me on it. Anyway, doc tried to wean me off it and right away my platelets started dropping. So then I had 6 Rituxsin infusions. They worked for about 5 months. I’ve had IVGG infusions but those are only temporary fixes. Am on Promacta now and my dose was just increased to 50 mg so we’ll see.
14 Apr 2022 15:49
  • VVeenM
  • VVeenM
Hope things are much improved for you now. Take care!
14 Apr 2022 15:40
  • VVeenM
  • VVeenM
14 Apr 2022 15:40
  • MelA
  • MelA
I still won't take Celebrex
14 Apr 2022 15:35
  • VVeenM
  • VVeenM
Do others find themselves stressing over how much calcium and iron they have in their day while on Promacta? I find myself looking at everything I eat to see how much is in it. I asked my doc about taking my multivitamin, women over 50,  because it has such a high mg of calcium in it and he said to continue taking it because I needed all the other vitamins and minerals to stay healthy and some calcium was needed to maintain healthy bones.
 I take my multivitamin in the morning and my Promacta before bed so there is a separation there. I do take my cholesterol pill at bedtime though and I believe I read to let your doc know if you take one because the Promacta might cause the statin to not work as well rather than the opposite.The maker of Promacta told me as far as the calcium, that was mainly foods high in calcium, such as dairy, and not to stress over the smaller amounts of calcium in other foods but just to be aware.  Anyone else have experience with this that they can share?
14 Apr 2022 15:08
  • russp
  • russp
Thanks for the reply. Yeah, they really did bill over $200k for the 4 treatments.  I can't understand it.  A large part of it was the medicine cost. Seems 100% insane it could still be that much when it's off patent and I got a biosimilar (generic).
14 Apr 2022 14:15
  • VVeenM
  • VVeenM
I was diagnosed with ITP over a year ago and have done the prednisone, which kept my counts up for nearly a year, Rituxsin infusions, which kept them up a few months, IVGG, platelet infusions and now am jyst recently went in 50 mg of Promacta. Hopefully that will increase them.  My question/comment is, how do others clean their noses iof mucous/boogers without it bleeding? I baby my nose big time because fear of nosebleeds is my biggest stressor.  If I barely touch the membrane it will bleed.   It stops fairly quickly but then I have clots in my nose so more build up. My ENT prescribed Mupirocin ointment which I carefully put in my nostrils, base only, which works great in keeping it moist. I also put a dab of mentholatum right under my nostrils to open my sinuses up because of the gunk in them. Basically I let the ointment soften the mucous up enough that it works it’s way out either out or back down the throat. I was wondering if others had this issue. I’m constantly dealing with my nose.
14 Apr 2022 13:21
  • VVeenM
  • VVeenM
Hi, my 6 Rituxun infusions cost, before discounts, $16,500 each. Thankfully I’d already met my out of pocket prior to receiving then.
13 Apr 2022 09:15
  • ecoclayton
  • ecoclayton
I've been on Doptelet for 2 years (3/2020).  Started at 20mg/day and it kept my platelets between 55 - 75 until I took the 2nd Moderna vaccine (4/2021) when it dropped my platelets into low 20's.  My numbers were jumping up and down (20's - 50's) so in January 2022 I upped the dose. I am now taking 40 mg/day M,W,F and 20mg T,TH,S,S and platelets have been 60-70 since. I don't really have any issue unless I am in the mid to low 20's. (mainly bruising and tired in the afternoons). I am having some liver issues when I drink even minor amounts of alcohol. I don't know if that is from Doptelet or not, but I never had that problem before.
13 Apr 2022 03:48
  • mrsb04
  • mrsb04
GaryG1

Is it not possible for you to self inject your Nplate?
13 Apr 2022 00:36
  • GaryG1
  • GaryG1
Hi MariLinTx,
Im so glad to see that the Doptelet pills are increasing your platelet counts. I have had ITP for over 40 years. I recently switched from my N Plate Treatment to try the Doptelet pills. I was on them for three months and was still having weekly counts in the 40-60 range. I started with the initial dosage and increased up to the next level of dosing with no improvement.
I have decided to switch back to N Plate injects now that they were at least able to increase my counts before up around the 100 level. I am also on Plavix and Eliquis and Beta Blockers so my Hemo would like to see my counts above 100 even though I don’t have any bleeding or bruising issues in the 5o range, Guess I’ll be driving 45 minutes very week to get the injection again.
12 Apr 2022 16:53
  • Rob16
  • Rob16
Celebrex (celecoxib) is an NSAID, but it is a COX-2 inhibitor, not a COX-1 inhibitor. COX-1 is an important part of platelet function, and most NSAIDs have COX-1 inhibiting effects, which is why they should be avoided, especially at counts below 50K.
Celebrex has been shown NOT to interfere with platelet aggregation even at a dosage of 1200 mg/day, while the normal arthritis dosage is much lower, at 200 mg/day.
www.medscape.com/viewarticle/411528
"Study Confirms Celebrex Does Not Interfere With Platelet Function" February 17, 2000
11 Apr 2022 23:34
  • MariLinTx
  • MariLinTx
I’m on it one month now. I’m also curious as to an answer. I’m having great results! Count went up to 283 after two weeks on it that doc dropped it to three times a week! Labs Friday will tell how that dosage is doing. 
11 Apr 2022 23:22
  • MariLinTx
  • MariLinTx
They started me on this before Doptelet. I had no adverse reactions. It didn’t raise my count as much as IvG and steroids. 
11 Apr 2022 13:39
  • MelA
  • MelA
It was my immunologist who told me not to get the Shingrix vaccine - I trust him more.

I wasn't sure what VZV meningitis was so searched.    Your doctor "...guess it was caused by VZV meningitis."   
Did you have shingles at the time of this optic disc swelling?  I think I'd really rather have a positive cause because there are many causes for the swelling.

I have had shingles 2x - hematologist knew it was shingles and boy so did I!
Even having had shingles 2x and knowing I could get it a 3rd time [have a friend who did] I won't get it yet.
I'm very glad you had no complications from the Shingrix vaccine!   
Continued good luck drbean!
10 Apr 2022 10:03
  • drbean7218
  • drbean7218

Interesting you had the Shingrix shingles vaccine - I was told not to get it due to my ITP.


My right eye was optical disc swelling in last year summer holiday.  The doctor referred to my previous medical history and guess it was caused by VZV meningitis.

My family doctor strongly recommend me to have Shringrix Shingles vaccine. Its worth to do it, since the treatment for VZV meningitis was
very tough.
09 Apr 2022 04:56
  • clarry123
  • clarry123
I’m wondering if anyone has had low platelets from eating potatoes?
I’m on N-plate and had my first concurrent platelets that looked like they might be stablising around 120 and then they dropped to 47 the following week. So now I’m trying to work out why.
That week my son who’s 25 came to stay for the week. He’s epileptic and has frequent seizures and near seizures which does cause me to stress. I’ve been to see a Cognitive therapist recently and thought I was getting a handle on dealing with stress. Maybe I’m still not, however the other thing that was different that week was my diet. I’ve seriously cut down my sugar and carbs intake since diagnosis, not exactly food exclusion more food limiting  (apart from rice, wheat and pasta) and am eating a lot of leafy greens, but this diet isn’t exactly my son’s thing so while he was here I was eating potato nearly every night and he was putting a lot more sugar in my tea than I have been recently. So now I’m wondering if potato might be the culprit.
They were back up to 88 last week, albeit on a higher dose and my hot flashes (which I get when my platelets are below 100ish, I’m not menopausal-I was tested!) have gone today and I’ve only had 2 meals with potato, in the last 10 days.
Does this sound familiar to anyone? I have found research papers linking potato to thrombocytopenia, albeit a rarity.
08 Apr 2022 10:48
  • russp
  • russp
I think this was discussed to a degree in the past but wondering if anyone has any info on a recent Rituxin treatment cost.  I just finished 4 rounds of infusion of I think 500mg each and it looks like the hospital is trying to bill the insurance around $48k USD per treatment (so nearly $200k total). I know I was given a biosimilar (ie: generic) instead of actual Rituxin this time.  From what I remember from last time (couple years back) this seems like 4x the previous cost using actual Rituxin.  Could this be right?  My costs are capped so I should be ok but still, this seems like complete crazy town. I know insurance won't pay that rate as it's not their negotiated rate but still, this seems totally bonkers.  How possibly could someone without insurance even get treated like this?  I know I'd just tell them I'd risk it if I was in that situation and not get treated since of course, that's so insane.
 
07 Apr 2022 10:18
  • JamieLea
  • JamieLea
Thank you all for taking the time to respond to my question.  I feel like for some reason she wanted me to not do the TPO agents just yet for some reason. I held off on the treatment of Rituximab and we are meeting in person next Friday to discuss how I responded to last IVIG and a plan moving forward.  I just feel I would like to exhaust other options before Rit.  I agree with the immune system too and is the reason I have held her off this long — with Covid.   Thanks again all.  
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