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
×

Advanced Search

Search by Keyword
×

Search Options

Find Posts from
Sort Results by
Search at a specific date
Jump to Result Number
Search in Categories
×

Search Results

Searched for:
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!
01 Apr 2022 12:55
  • delta809
  • delta809
Curious what the potency of Lusutrombopag is compared to Promacta (eltrombopag). Have any of you heard or read? Is anyone here using it?

Doptelet (Avatrombopag) is threefold more potent than eltrombopag (see link) so curious about Lusutrombopag. 

www.sciencedirect.com/topics/medicine-and-dentistry/thrombopoietin-receptor

pdsa.org/contribute/item/1661-fda-lusutrombopag.html
31 Mar 2022 00:10
  • MelA
  • MelA
Why don't you have your cardiologist and your hematologist get together to discuss what is best for you?!
When I was diagnosed with Graves Disease I had my endocrinologist get with my hematologist & they decided the one treatment for Graves would most likely lower my platelet count so we went with a different treatment.   I'm now with an HMO and that makes it very easy for my many specialists to get together to discuss me.  It is ok to ask one specialist/doctor to talk with another specialist/doctor - in fact it is a good idea!

Good luck!!
 
30 Mar 2022 18:52
  • MariLinTx
  • MariLinTx
My cardiologist wants to start me on PLAVIX because my cardiac calcium score came back very high. He knows I have ITP. Doptelet seems to be working but won’t Plavix and Doptelet just cancel each other out? I have called my hematologist but haven’t heard back yet. Thanks in advance. 
30 Mar 2022 11:36
  • b2h
  • b2h
Wow, 30 days! That's a long time. Good to know. Thanks.
30 Mar 2022 09:53
  • CindyL
  • CindyL
Yeah, that's what we have here too.  It's almost time to switch to rubber boots now.  We don't have a membership at Cosco right now.  But I'll start saving for a pair of cleats for next year.  Our pharmacy carries them.
It's not looking promising for us to get out this weekend.  Cathy and her boyfriend are supposed to be going to visit his sister this weekend, and we were going to do our walk on Friday.  But I just checked the forecast and it's calling for 70% chance of rain.
Once I do my morning stuff on the computer, I'm not at it until the next day.  I'm excited to get back to the lake where the geese are.  It seems like every year, there are more families.  I think the babies will start showing up in May.
Category: Social Chat
30 Mar 2022 03:02
  • Lman
  • Lman
Thanks. Still got a lot more to go.
The whole journey is not going to be easy but I'll do my best to reach it!
29 Mar 2022 12:59
  • MelA
  • MelA
I was trying to think of ways to keep you out hiking and at your Happy Place!!     The cleats I bought were cheap at Costco, but they only have them in the winter I think, and they slip over the shoes you are wearing.  Found a Canada Geese webcam site and was going to share it with you but I think I accidentally deleted it because I can't find it.  Will look online later. 
 
Category: Social Chat
29 Mar 2022 10:21
  • CindyL
  • CindyL
We have ice cleats which we will be looking into for next year.  I was actually going to try Steven's on Sunday and forgot.  I need new winter boots so won't be investing in the grips now.  But I'm hoping to get a pair of proper hiking boots for this year.  Being on a fixed income makes it hard to justify something like that.
Cathy just uses her phone to take her pictures, but it really takes good pics!  She'll let me go a short distance off trail, but she will go farther to get a good shot.
I've always been a bit of a clutz.  I'm one of those people who can trip over their own feet. I find the carefuler I am, the clumsier I am!
It won't be too much longer before I get to go back to my happy place, too.  A friend posted some pictures from there last week and a couple of geese are back!  Can't wait to see the chicks and watch them grow!
Thanks for liking the pictures!  It's hard to pick out which ones to post!
Category: Social Chat
28 Mar 2022 19:02
  • MelA
  • MelA
Cindy I just love your photographs, they are art!   And as mentioned I go on walks with you through those beautiful, interesting photos!  That's neat that Cathy has the photo gene too>

Cathy is going to have to put a tether on you so you don't fall - after breaking my shoulder & my head needing 3 or 4 staples to close a wound when I missed the curb on Jan 18, 2028, a nice sunny dry day, I'm afraid to fall.  Do they make hiking shoes with cleats?   I bought a pair of cleats that go over my shoes, keep them in the car in case they are needed.  Behave yourself so Steven doesn't stop your photo excursions!  
Category: Social Chat
28 Mar 2022 11:49
  • CindyL
  • CindyL
Mel, I don't give out too much info on my NWP page, so I don't name my sister.
Cathy takes some pretty good pics on our walks too!  She can go off trail to get some better ones than I can because I'm not allowed to do that.  I have a tendency to trip over things if I do!
I fell 3 times on one of our walks and I think I did some damage to my leg with the 3 trip.   Even last week, I slipped on some ice and gave myself a nice little bruise on my upper thigh.  It's fading now, but I thought I might be giving it a match on the other side yesterday when I slipped.  Didn't fall, so no damage.
Steven has even threatened to not let me go out with Cathy if I didn't stop falling!
Category: Social Chat
28 Mar 2022 06:12
  • mrsb04
  • mrsb04
Lman ....Guidelines from  medicines.org.uk/emc/product/10620/smpc 
 Special precautions for storage 
  1. Store in a refrigerator (2°C – 8°C).
  2. Do not freeze.
  3. Store in the original carton in order to protect from light.
  4. May be removed from the refrigerator for a period of 30 days at room temperature (up to 25°C) when stored in the original carton.
When I was taking it I picked them up from the hospital and took them home in a carrier bag.  Often out of the fridge for over 2 hours before I got home to put them in the fridge. 
You are going to have to keep them in original packaging and have a copy of your prescription. Maybe you will not need to put them through the scanner. I'm pretty sure my son doesn't have to put his insulin through the scanner when he flies.  Personally what ever the hassle I  do not let any of my meds out of my sight when flying.  
27 Mar 2022 14:10
  • Lman
  • Lman
Hello.
I had two questions. 
1st, is an airport x-ray scanner safe for nplate? I was afraid that it might change its ingredient and efficacy.

2nd, how serious is the 2-8 centigrade refrigeration rule? As I have read, one should be able to remove vials from the refrigerator and keep it under 20 degrees centigrade for a month, never returning them to the refrigerator again. The vials must always remain on their sealed packs.
So the question was given that I was going to have a 6-7hr flight, should I give my packs (I'll be carrying two) to the crew to refrigerate it, or just hold it with myself with my provided ice pack? I fear they may lose it or fail to provide the desired temperature. This is going to be a drill for the time I will be carrying some 10 packs for a 16 hr flight.

Thanks.
24 Mar 2022 23:32
  • agarr7
  • agarr7
Greetings Eli -
Thank you so much for reaching out and sharing your story with me. I am so incredibly sorry to hear that your daughter has ITP. It is such a horribly frustrating illness. It's also isolating. My daughter still has it! In April, it will be 8 months since I first noticed symptoms. To be honest, my attitude towards the illness has changed a lot, which has made our life a little better. After my daughter was diagnosed, I was initially stressed the f**k out. I was writing down her symptoms every single day and taking pictures. I would check her mouth to see if blood blisters were there multiple times a day, and I genuinely felt like I was losing my mind. I would stay up until 3am each night researching everything I could about ITP, including any natural remedies. I was juicing every single day to give her fresh nutrients and changing her diet around. I reached out to academics and scientists all over the world to see if they could help and I just felt so frustrated. I feel like I have looked up everything on the internet about this illness. To make matters worse, I was pregnant with my second daughter throughout all of this  (I just gave birth last month).

We would take our daughter to get blood work every two weeks until I just got fed up with the whole process. We stopped going every two weeks and made it once a month because we were getting familiar with the symptoms. I didn't want to keep stressing her out with blood work that didn't really tell me much. Now, we don't take her to get blood unless her symptoms look like they are clearing up. I know how low her platelet levels can get and I know the symptoms...I don't yet know how high they can get, so when she looks super healthy and free of petechiae and bruises, I then take her to get blood work. I read a narrative somewhere online from another parent who stated that you are in charge of your child's health and you make the rules. You don't have to do anything you don't want to do. If you don't want to get blood work every 2 weeks, then don't. I took that advice to heart and started to feel more empowered. 

I will say that something weird is happening with her ITP. In October, I started giving her papaya leaf extract after reading a million things about it on the internet. I alternate between these two brands (one is hella expensive, but effective):

1. Herbal Goodness: www.amazon.com/Papaya-Leaf-Liquid-Extract-Digestive/dp/B005TK5MQI/ref=sr_1_8?crid=6U4Q5RPBK1ZM&keywords=papaya+leaf+extract&qid=1648177097&sprefix=papaya+leaf+extract%2Caps%2C136&sr=8-8

2. Hawaii Pharm: www.amazon.com/Alcohol-FREE-Extract-Organic-Glycerite-Supplement/dp/B01BK3W008/ref=sr_1_5?crid=1CKJ92BRX2FNJ&keywords=papaya+leaf+extract+hawaii&qid=1648177131&sprefix=papaya+leaf+extract+hawaii%2Caps%2C71&sr=8-5

When we first gave her Hawaii Pharm, I didn't see much improvement, however, when we gave her the Herbal Goodness brand, her symptoms almost completely disappeared. All of her bruising and petechiae went away, and her mouth looked wonderful. We genuinely thought this cured her, so we went to get blood work and found out that she was still at a 6,000 level, even though she had NO symptoms.  In other words, the papaya leaf extract doesn't really boost her platelets, but it makes the symptoms much more manageable. 

Around Christmas, we were terrified to be around family because of COVID, however, we decided to risk it because our daughter's been living like she's in a bubble this whole time. As we assumed, she got super sick after being around everyone and we took her to the ER because this was her first time getting sick while having ITP and we didn't know if her platelets would plummet even more. She was extremely lethargic and she had a fever. The hospital discharged us that night and just told us to give her tylenol. The next day she was better and the weirdest thing happened: ALL of her ITP symptoms disappeared for a few weeks. We got blood work and her platelets shot up to 28,000. While that's still SUPER low, we were excited. We thought it was going away, but of course all of her symptoms came right back. However, ever since she's been sick, her ITP doesn't seem to be *as* bad (knock wood). She still gets bruises on her shins, however, her petechiae isn't that bad. I haven't taken her to get blood work in about 3 months (third trimester of pregnancy + birth made it difficult to do that), but we want to take her again to see if something has changed. 

Other things I've been doing to manage her ITP:

1) When she bangs her legs or falls, to help with the bruising, I mix a drop of lavender essential oil + frankincense extract with coconut oil and I rub it on her bruises. Lavender and frankincense help with bruising. I eventually want to put a drop of frankincense extract (the food grade version, not the potent essential oil for external use) in her milk to see if that helps. I read this blog post a few months ago and reached out to the author who stated that her son used frankincense to help with his ITP: craftyourhappiness.com/2015/02/25/charles-cures-the-incurable/. I have recently implemented frankincense into my own routine to help manage anxiety and stress (which it does) and it has been life-changing. I've been using this brand: www.amazon.com/dp/B072HFTNM2?ref=nb_sb_ss_w_as-ypp-ro-model_ypp_ro_model_k0_1_7&&crid=307IUWI769X07&&sprefix=frankin. I put a drop in my water at night and it immediately calms me down.

2) I try to not stress her out. Because she's 2, she's already so emotional and stress is not good for autoimmune diseases. 

3) I have added beets into her diet. Initially I was cutting up some raw beets, but my husband said he didn't know if that was healthy to do, so I now give her cooked beets almost every day and I feel like it genuinely helps. 

4) I started giving her vitamins. I know that vitamin k and d are great for blood health. She takes Smarty Pants toddler vitamins. I don't know if it's helping or not, but I want to ensure that she's getting nutrients.

I let her live her life without ITP limiting her too much. Yes, there are certain things that she can't do now because of it, but we still take her to the playground and let her play with other kids. We monitor her much more closely to ensure she doesn't hurt herself, but we don't stop her from living her life.

Feel free to reach out to me at ANY time. I think the best advice I can give is don't let the illness ruin your life or her life. Yes, it's stressful AF and there are times where you're going to want to flip out and cry, but once when you learn to live *with* it, it just becomes a part of the backdrop of your day - not the main event. There are times I completely forget that my daughter has it. Unless she starts bleeding out heavily and/or having some type of serious emergency, we just try to enjoy each day and not stress out about it. You never know - it could go away one day...which is what we are all hoping for!

I am here for you if you ever want to chat more or connect in any way. I am glad to meet another parent who has a daughter around the same age as my own who gets this struggle. I hope my message helps. Sorry for the length, lol.
Category: Newly Diagnosed
23 Mar 2022 18:29
  • EdwardJacob
  • EdwardJacob
I am 75. Retired also. No IgA and low Lymphocytes. Was initially excited about Evusheld, but then was disappointed as more information leaked out. Government paid $1700 U.S. for each of my two doses. Maybe the U.K. is smarter. Initially, it looked like their claim that it protected against Omicron was tied to the clinical trial in vivo. It turns out the foundation came from in vitro work. Bleach would kill it in vitro. Who will take bleach? You may or may not be missing anything of value. The data is questionable. Sorry you are having another variant there now. Coming here fast. I retired from healthcare also. 
23 Mar 2022 15:02
  • mrsb04
  • mrsb04
Edward
JJ & I are in the UK
23 Mar 2022 10:45
  • EdwardJacob
  • EdwardJacob
To what country are you referring? I got two doses of Evusheld after the FDA (U.S.) decided one was not enough. I got 150MG twice. The clinical trials were conducted with 5000 humans before Omicron (Delta). They then did test tube trials (in vitro) and found it killed Omicron in a test tube. But, it has not been shown to kill Omicron in a human. Very confusing. The FDA then suggested getting another dose. So I have the stuff in me and no idea if it works. I am immunosuppressed. Also, my platelets, stable at 48, dropped to 34 after the two doses. No one is collecting this kind of data. I will not change my behavior. I have no confidence this is any good. 
22 Mar 2022 12:40
  • JJ
  • JJ
I heard they ordered it back last summer but then cancelled. But it does get a mention in the government green book so there is some hope.

In the meantime I'm hoping to get on a trial for another prophylactic. I'm told in four weeks but you know what these things are like for delays.
22 Mar 2022 01:50
  • mrsb04
  • mrsb04
JJ
It has been approved by MHRA but no NICE guidelines issued yet. Can't see the orders being place before NICE says yes. 
21 Mar 2022 22:38
  • Eli
  • Eli
Hi aggar,

How is your child doing? Our 2.5 year old was diagnosed with almost 3 months ago. Our stories sound very similar, except that we were sent to the ER when our pediatrician saw how low our daughters platelettes were,  and we were admitted for the weekend with 2 IVIG treatments. Since then our daughters platelettes have never been much above 30, and we've done another weekend of ivig (all of this hospital time was during the omicron rush in nyc) and two 5 day prednisone bouts. She gets up to 20 thousand or so, and then drops right down again into single digits. 

I'm seeing petichia and a few mouth blisters today, along with lots of bruises, so I bet she's low again. We weren't supposed to do another CDC until next Monday but I'm sure the doctors will want us to go in tomorrow. For what, though, if the treatments hardly do anything? Of course I'm going to get in touch with them tomorrow, but I feel kind of doubtful that they'll be able to offer any new info. And feeling more reluctant to do more treatments that only "last" for a week or so. 

Anyway, I just wanted to commiserate with you. I hope your kid is doing well and ITP is a distant dream by now for you! 

-Eli
Category: Newly Diagnosed
21 Mar 2022 07:26
  • JJ
  • JJ
If it were me I'd be looking for something else causing the temperatures and headaches. It's not a feature of ITP and needs looking into as something separate.
Displaying 271 - 300 out of 71100 results.

Charity NavigatorGuideStar Seal NORD Member BadgeTHSNA logo