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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.
21 Mar 2022 07:21
  • JJ
  • JJ
The conference is on line again this year. See you there!

21 Mar 2022 07:04
  • JJ
  • JJ
I did six rituximab with bendamustine chemo (one every four weeks), and now maintenance ritux for two years. It's often done every eight weeks but I opted for every twelve weeks because I was fed up with them! So I will do eight maintenance doses. 

Evusheld has now been approved in the UK but we don't think that the government has actually ordered any so we still can't get it.
20 Mar 2022 14:47
  • MelA
  • MelA
I'm just curious - what did the doctor (PCP, hematologist or OB/GYN or a high risk OB/GYN?) tell you was the reasoning behind why a spleen removal "could" help during pregnancy?   I'd want statistics, reasons, facts as to the why "could"

(And chances are this post may not be seen by many - if you don't get answers why not post it up in the adult section where more will see it?   Good luck to you!!)
20 Mar 2022 08:39
  • cs090978
  • cs090978
How many Rituximab doses are you receiving? Hers was four weekly doses then every eight weeks until a total of sixteen. 
20 Mar 2022 08:37
  • cs090978
  • cs090978
Thank you for sharing your experience, as it turns out she actually had Covid when I posted this question. I asked that they run an antibody test at her Rituximab treatment in Feb and she had antibodies. With all things considered, she did quite well. She was quite sick but I blamed it on her treatment a few weeks before and the platelet meds that she is on. She is still homebound except for her Dr appts, one more treatment to go and then maybe back to having a life at some point down the road, I'm thinking probably October IF Covid has settled down. Not sure if her Dr is going to suggest Evusheld at this point, he never really seemed all on board due to her double whammy going into it.
19 Mar 2022 21:50
  • EdwardJacob
  • EdwardJacob
I had two Evusheld doses. No side effects. Am 75. Doctor told me cardiac symptoms were rare. But, AstraZeneca did their clinical trials before Omicron. They claim it will kill Omicron because it does in a test tube. There were no clinical trials with humans during Omicron. That is why the FDA revised its EUA and second doses were given. I got no benefit from two Moderna shots - immunosuppressed. I have no idea if there two Evusheld shots will give me any protection. I don't think anyone does. I continue to mask and stay out of restaurants and crowded places.
19 Mar 2022 01:36
  • gozorakgogo
  • gozorakgogo
When they tell you that you have to go into hospital because you have a platelet level of 2 and are there for 10 days undergoing multiple IVIG as well as a platelet transfusion and youve never heard of ITP and know absolutely nothing about the condition your not going to question what is recommended as far as treatments while in hospital because your not going to know what your dealing with and are going to have to assume they know what they are doing.  Afterward, when you have the time and ability to learn about the condition you have more information with which to ask legitimate questions. 
18 Mar 2022 22:36
  • JJ
  • JJ
IVIG is just as you say, a first treatment and when it doesn't work, either at all or for very long, you move along to the next level of treatment. There used to be very few treatments but now there's a whole raft to choose from. Good luck with whatever you decide to do.
17 Mar 2022 13:21
  • MelA
  • MelA

Never say never  :) 

h2 there is a big difference in:
"...never had..."
and
"...never will..."

My hematologist said he NEVER HAD a patient go into remission while on IVIg - he "never had".

IVIg is considered an emergent treatment.  We did have one wonderful woman here and no other treatment worked for her so she did have to use IVIg and it was only one brand of IVIg that worked for her.   

Way back when I was diagnosed evidently IVIg was a treatment but I was offered only prednisone or splenectomy.  It was many years later when I found out IVIg had been available - I would not have wanted it as it was gamma globulin that triggered my ITP.  
16 Mar 2022 21:41
  • antonioshirl
  • antonioshirl
Hi! Good day! Anyone here who got diagnosed with ITP and still able to get pregnant? Did you have to remove the spleen before pregnancy? Doctor said removing the spleen could help in the course of pregnancy but not required to be removed. Thank you! God bless! 
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