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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.  
07 Apr 2022 03:29
  • mrsb04
  • mrsb04
I agree with JJ
07 Apr 2022 02:59
  • JJ
  • JJ
In these covid times when there's a need for a functioning immune system, I wouldn't be doing rituximab if there were other options. As someone else said, why not try the TPOs first, Nplate or Promacta/Revolade.
06 Apr 2022 15:07
  • midwest6708
  • midwest6708
You might want to ask about trying a TPO-RA drug before rituximab. 
I don't want to talk you out of anything, But since you asked for personal stories, I'll be honest and tell you my admittedly atypical response to Rituxan was not a good one.  My doctor encouraged me to try it about five years before I went finally through with it.  That first time, I felt so uneasy about it that I backed out of it on the day I found out insurance had approved it.  My doctor and his staff were baffled and annoyed with me, but my negative gut feeling was so strong that I just couldn't take the plunge.  Five years later, my then-treatment was going okay, but could have been better.  I set aside that gut feeling and went ahead with it.  I'll just say, that was a big mistake that I'll always regret.  I returned to NPlate and still take it now with reasonable results.

Rituxan isn't a drug to take lightly.  It's a strong cancer drug that hasn't been formally approved for use in ITP, even though it has come to be commonly used for that purpose.  Up to about 20% of people who take it for ITP can have a reaction called serum sickness, and it has even been known to trigger new autoimmune illness in some. 

I believe a person should feel hopeful and confident about the treatments she tries for ITP.  I wish you best of luck with whatever you ultimately decide.  
06 Apr 2022 10:37
  • RR01
  • RR01
If those are the only symptoms and no active bleeding then I dont think you have to worry I guess . Just my suggestion ...
05 Apr 2022 11:45
  • JamieLea
  • JamieLea
Thanks for the reply back.  My only symptoms have ever been just bruises on my legs and more recently (once down in the 10’s) heavy periods for like 2 days, whereas before I didn’t have heavy periods at all).  I did see something about increase in water intake.  Your friends has had an amazing response.  I guess I wouldn’t mind getting this if it works for an extended amount of time; however, it is hard to know if I will even respond let alone for how long.  I hate to deplete my immune system for so long and have nothing to show for it.  Also, the side effects sound pretty scary.  
05 Apr 2022 11:37
  • MelA
  • MelA
I have not had Rituxan but a friend did - that was back when you were given 8 infusions - I think it was at least 10 years ago but may have been longer.  Her count has been good ever since and it even helped with her RA.

A man who came here & hasn't been back for a long time advised people to drink a lot of fluids.  But as I said, I have not had to use Rituxan so I know nothing about it.

What are your symptoms now that your count is in the 5-15k range?

Good luck to you - keep us posted!
05 Apr 2022 09:39
  • CindyL
  • CindyL
Hi Jamie.  I did Rituxan in 2011 and it worked well for me.  My count started rising with the first dose.  I had no issues with any of the infusions.  I was told to have someone with me for the first time, so my husband took the day off but I didn't need him.  Everyone is different and I think I am an odditity as far as Rituxan goes.  By the time my 4th treatment came around, I had normal numbers and thought I wouldn't be getting it but did.
I'm sure you'll get a lot of replies.  Good luck.
04 Apr 2022 22:39
  • delta809
  • delta809
Interesting stuff. I couldn’t find any recent information about CRISPR versus EBV, but found this fairly new method to block its production:
www.ncbi.nlm.nih.gov/pmc/articles/PMC4822607/

Spironolactone
en.wikipedia.org/wiki/Spironolactone
Although there are some possible bad side effects.
04 Apr 2022 18:24
  • JamieLea
  • JamieLea
Hello all! It has been quite sometime since I have logged on. I hope you all are doing well. I have had ITP and managed to only treat during pregnancy (steroids/IVIG).  The time has come where my 30-40 platelet count has dove down to the 5-15 range.  I have been going in for IVIG fairly regularly and my hematologist has been pushing me to get Rituximab for about a year-and-a-half.  I told her I would do it and we are supposed to begin on Thursday.  I am worried and stressed and thinking I might be making a mistake.  Any advice/stories on your thoughts of this medicine would be greatly appreciated.  I am not sure where to go, but I really don’t wanna do this.  I am 39 and have had ITP since 2007.  Thanks! 
02 Apr 2022 01:48
  • delta809
  • delta809
momto3boys,
Thanks for sharing your journey. I’ve been on Promacta for almost 8 years and concerned about liver toxicity. My hema has been suggesting Doptelet.
Hope it continues to work good for you!
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