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Today 01:31
  • mrsb04
  • mrsb04
Sorry to hear that ManifestMe. Hopefully this is  temporary blip. 
Today 00:42
  • delta809
  • delta809
Has anyone tried Pantethine (produced from vitamin B5) to help lower bad cholesterol? Or tried anything else besides statins?

Recently, my lipid panel test results showed very high LDL (over 200). Haven’t been very active since the pandemic started and haven’t had the best diet so assuming that has something to do with it. I would prefer not to take statins. I started exercising again and changed my diet.
Heard about Pantethine which seems to lower LDL and have effects similar to prednisone. Potential side effect is that it lowers platelet aggregation but noticed that various supplements and even foods do as well.
Also, very curious if true that Pantethine has effects similar to prednisone, would it have positive effect on platelets.

I’m still on Promacta. Been on it for almost 8 years. 25mg keeps my counts around 50-60k.
Yesterday 22:17
  • ManifestMe
  • ManifestMe
Updating again! I’ve been updating when something happens. To briefly recap I got Rituxan back in October 2019 after being diagnosed at the very end of August 2019. After the last round of 4 Ritux doses (in Oct weekly doses) and a long Pred taper I have been extremely stable and off ALL medication since December 2019. Unfortunately I caught Covid - first symptom was Nov 5th 2021, finally decided to test Nov 9th after someone I’d been in contact with told me to get tested, positive. (tried looking for a specific Covid thread that talked about levels dropping but couldn’t find it). Recovered well from Covid. Then I started seeing blood in my saliva and was just feeling pretty off and started seeing petechiae around November 20th-ish. Finally got labs done the night of Nov 24 2021. Platelets came back at 4. So I was admitted that night and did a hospital stay 24-27. The night I was admitted platelets were at 4 they went up to 6 on their own within a few hours of being in the hospital with no medication so nurses and doctors were happy to see this. Did 2 rounds of ivig with Dex. Was released on Nov 27 with count of 65. Will retest counts again tomorrow to see. They’re hoping that the covid sent things out of wack and that my levels will return to normal but we will see. Feeling extremely exhausted! Hoping everyone is well. 
27 Nov 2021 19:48
  • Rob16
  • Rob16
Sandi is still listed in her profile as a member and as a moderator.
Her last post was May 26, 2019 after fading out over 3 months.
From elsewhere on the internet, she was enjoying family and travel as of this fall,
so hopefully there is no cause for concern.
Wherever you are, Sandi, thank you!
Category: Social Chat
27 Nov 2021 11:49
  • Lman
  • Lman
Hi.
I did another test. It was 845k. I called hema and took 40 mg aspirin.
I will be vigilant watching symptoms. I'll have another test by Thu, the day I have to shoot, and I'll pray that I will have some good news. My previous experience with IVIG effects had weard off by the day 11. My fear is that by that time my previous nplate dose may be too low.


mrsb.
I'm really sad to hear that. I know how frustrating it is. I wish you will soon find the treatment with near-zero side effects and that we soon be able to halt all treatments.

MelA
I increased the dose for less than one unit (according to the protocol) desperately to stay away from hospital. I failed. I wish I had taken more rescue pred. Hema told me to do so but I really hated prednisone and I did not. Now I ruined a week and received much more dex than a couple days of rescue pred :|
27 Nov 2021 09:41
  • CindyL
  • CindyL
It's been almost 2 years since Sandi has posted. Don't even know if she's still a member.
I do miss her words of wisdom.
Category: Social Chat
27 Nov 2021 02:18
  • johnmerrick
  • johnmerrick
i'm back just to see if sandi came back. looks like she hasn't.  thank you for all your help sandi.
 i hope where ever  she is she is getting all the help see needs.
god bless.
Category: Social Chat
27 Nov 2021 00:14
  • MelA
  • MelA
Lman get another platelet count so you know for sure what is going on - you don't want a high # like that!!
Di you increase your nplate on your own or did the doctor?
26 Nov 2021 15:52
  • mrsb04
  • mrsb04
Lman 

A count of 777 would have sent me over the edge with worry about the possibility of clotting. 
I'd read that paper before but good to re-read as a refresher.
My understanding is IVIg response is quite short lived. I'm not sure about Dex though. 
My Pred rescue is  4 days doing 20mg,15mg,10mg,5mg.

I am sure about doing the PRN1008 trial if I get the opportunity.  
I've had ITP since 2014
Azathioprine:- no good unless on a high dose but side effects (profuse diarrhoea) too much to bear. I dare not leave the house !!!!
Mycophenolate:- didn't work and made me depressed +++
Fostamatinib:- didn't work. 
Eltrombopag:- lost response on 75mg/day but by then had iron deficiency due to Eltrombopag chelating my iron stocks. 
Romiplostim:- I do not like the instability of counts nor the bone pains, muscle pains and joint pains which started when I was upped to 325mcg dose. I've dropped back to 250mcg but it hasn't' reduced the pains. Plus I can tell that  my Tuesday dose it is losing effect by the weekend as I bruise so easily then.  
26 Nov 2021 04:36
  • Lman
  • Lman
two days post-discharge. It is really hard honestly. high dose dex has very nasty side effects, insomnia for a week, muscle cramp, hot flashes, frequent urination, mood changes, and so on :( 
I also have midterms and this hospitalization was a shock for me and my long-term plans. I may have a test tomorrow. Last night I could really feel high blood pressure and headache and shortness of breath and was horrified, could not tell whether I'm low or high.
I just hope one day it all ends. 
25 Nov 2021 16:02
  • MelA
  • MelA
777k !!   That is way to high for my liking - when was this count?

Regarding IVIg - everyone responds differently - I have never had it and hope never to.

Take care!!
25 Nov 2021 13:31
  • Lman
  • Lman
My count was 777k I think the increase in nplate dose with IVIG and dex did this. This week I injected 2/3 of my previous total dose. Dex usually has a very fast and encouraging response but I think I should be cautious about returning to baseline. Does anyone have any idea how long does IVIG or dex effects last so that once they wean off I am not receiving Nplate less than I should be receiving? I will test for next Thu where I will have to shoot, but I'm worried maybe I should have another test before that? The next Thu will be 11 days post the last IVIG vial I used.


mrsb, are you sure about the trial? 
I think you will find this helpful.
aob.amegroups.com/article/view/6335/html

 Although combinations of two different TPO-RA or a TPO-RA along with fostamatinib can be considered, we find the expense of such combined therapies to be prohibitive

I also took 10mg pred for two days as a rescue before going to the hospital but it did not work. How much and for how many days do you take when you have an infection?
By the way, the monocyte percentage is still slightly high but CRP returned to normal. I now wash my mouth with salt every night before going to bed it's a good practice.
24 Nov 2021 22:39
  • lilicarot
  • lilicarot
Hi
I had COVID last year and my platelets dropped to 19,000 and was given Dexa. This year I had to get the Moderna shot because I was exposed at my job multiple times. After the shot my plat dropped to 7,000. I took prednisone for 3 weeks and counts went back to 76,000. I didnt not take second shot. I was doing great and they dropped to 11,000. 2 weeks after stopping steroids. I had a stomach virus vs symptoms of my platelets dropping again and I am back on steroids. Very sad… will continued 
24 Nov 2021 12:43
  • mrsb04
  • mrsb04
My count always drops if I have a cold and takes a while to get back up. I usually do a pred rescue and leave any other medication dose the same. I had Romiplostim 5 years ago  and lost response after year. Then I had 4 years on Eltrombopag before losing response to that. I've been back on Romiplostim for 6 months and I'm fed up with it already no stability at all. Am seeing my haemo on Monday and am going to ask to come off it and go on the PRN1008 trial. 
22 Nov 2021 09:32
  • CindyL
  • CindyL
I just recently got over an infection myself (NP said it was an absess) and was on 2 different antibiotics, one being Penicillin.  My counts didn't change, but then, I'm in remission and not on any medication.
When my teeth or gums get infected, I gargle with salt and warm water.
Good luck.
21 Nov 2021 10:17
  • Lman
  • Lman
Hello. I was doing well on Nplate.
suddenly two weeks ago I felt dryness in my mouth, my parents had caught a cold and a couple of days after I experienced these symptoms as well but just took acetaminophen, and worked fine. Counts were in 50-100k and not really bad ( on some 6.5 mcg/kg dose ) but I woke up with a nose bleed and I was very worried. I checked it was 6k. I was frightened and increased nplate by 1mcg/kg and did it 2 days earlier and after 2 days of shot reached 19k but dropped to 8k the next day ( I know it may not really work so fast ). So I stayed in the hospital for 3 days and got Ivig/ Dexa (0.3 gr/ kg ivig + 40 gr dexa each for four days ). Upon I was admitted, they also confirmed that I have some sore throat regardless of low count symptoms in the mouth and even after I was discharged ( after two days some 185k on all the dex/ivig/nplate trio ) even after third day despite counts are good still some of the initial throat redness due to possible infection is still visible ( but I think is fainter ). I'm worried. Do I need to do anything or just stick to the previous nplate dose before all this started, or visit some virologist? I was not given any specific drug for this possible infection and my hema, one day before admitting to the hospital where we met, also did not check it.
I'm afraid about losing response but I know people report transient drops after subtle infections. It would be appreciated if you could help.

P.S: I recall hema prescribed several tests (Urive, kidney and liver) which came normal but another was CRP which was 69. I think theoretically it can mean infection (maybe common cold). Holding my fingers crossed until Tuesday where I will get another count/CRP to see what should I do. I called him and he told me to do so.
19 Nov 2021 19:45
  • jeffmiller
  • jeffmiller
Thank you for taking the time to reply.  Much appreciated!
19 Nov 2021 19:35
  • MelA
  • MelA
Hi Jeff,

I don't live anywhere near you - and I'm an adult with ITP.  However if there is a teaching hospital/university hospital near you I would check there. 

Also feel free to post this up in the adult section - seems like not many come to the children's section right now.

Sorry your son is still dealing with ITP 7 years later!!

Melinda
18 Nov 2021 11:31
  • jeffmiller
  • jeffmiller
Good Morning,
Wondering if there are any hematologist recommendations for the northern Virginia/DC area.  Our son was diagnosed with ITP at 4 and is now 11.  We have been on Promacta for a number of years and and our counts are generally stable (on the lower end), but can fluctuate.  Seeking a Hematologist who really understands ITP, the whole body challenges that it presents, and has experience with Promacta.

Thank you in advance.
17 Nov 2021 02:23
  • mrsb04
  • mrsb04
There are other meds than steroids. Has he tried any of them?
16 Nov 2021 21:14
  • Luvmycat
  • Luvmycat
Hi everyone....my husband has ITP (untreated by choice, steroid dose has to be too high) along with a bad case of bleeding hemorrhoids. It's pretty bad when I have to deliver a roll of paper towels to him in the bathroom.  He needs to have something done (again) about the hem'roids and is also overdue for a colonoscopy due to the pandemic. My worry is that he would never survive the trauma of the prep for a c'oscopy. His last one was 7 yrs ago. (He's on a 5 yr schedule.) We're at the point where we're weighing risks against benefits. Wondering if anyone else has been in this predicament. We see his hema on Thursday.  Just wish there was some other type of test or scan for colon cancer for patients like him and others.
16 Nov 2021 10:21
  • CindyL
  • CindyL
Mum
With 11 years between us, we got close after she had her son.  And we've been close since then. Even though I'm older, she's the protective one!  When my niece was a toddler she liked to climb all over me.  With my ITP, Cathy would tell her to be careful.  I just said, if I bruise, at least I know where it came from.
If Mum was interested, I would show her some of the pictures I took.  She found the goslings cute and liked to see their growth.
Category: Social Chat
16 Nov 2021 00:32
  • MelA
  • MelA
Mum
It is great you and your sister have a renewed relationship.  Smiling at your Mom shaking her head - she looks forward to hearing the # of photos :) 
Category: Social Chat
15 Nov 2021 17:12
  • poseymint
  • poseymint
Your story is important. It could provide much needed hope to the very worried parents of children with ITP. If my child had ITP I would certainly want to hear that it could resolve and not come back. And often a personal story is more effective at reassuring a frantic parent than a doctor with his statistics.
15 Nov 2021 16:52
  • Ssigrist
  • Ssigrist
Much appreciated.  I just feel like I wish there was something I could provide to the ITP community.
12 Nov 2021 09:53
  • CindyL
  • CindyL
Mum
Thanks, Mel.  Cathy and I have been spending more time together.  It started out as a chance for us to talk about mum and now it's because we like to get out together.  I still tell mum how many photos I take on these walks and I can just see her shaking her head at me!
Category: Social Chat
12 Nov 2021 02:31
  • mrsb04
  • mrsb04
Pleased for you Gozo. Long may it last
11 Nov 2021 20:01
  • gozorakgogo
  • gozorakgogo
Hey all

Been a while. After having skipped my last 3 Hemo appointments for CBC's(the last one being this past April) I FINALLY went this past Monday. After my Diagnosis and 10 day hospitalization in July 2021 with a platelet level of 2. I went through the 4 Ritux treatments(Jul/Aug 2021) and received weekly Nplate injections from July to Nov 2021. My level was at 100 at my final Nplat injection a year ago. It remained right around or slightly above 100 up until my last CBC this past April(never dropping below 100). After 7 months of no CBC's and a full year since my last treatment of any kind my platelet level is now at 179. Great news.

Im one of the lucky ones. But for those of you who may be newly diagnosed, its rarely as bad as you initially think it is. The forum here was of great assistance to me i those first few months. Since that last visit and CBC in April I had actually stopped thinking about ITP. Its as if it never happened and I never worry about it. At all. I think of it as a one time thing. Of course we all know that the possibility(if not probability) exists that remission ends and its back to ground zero. I actually dont care. If that were to happen unlike last time I would know what was up and not give it any thought.

Hope all is well with everyone
11 Nov 2021 18:03
  • Juliandrea85
  • Juliandrea85
Don't be guilty, just happy! I've chronic itp since i was 11 years old also, and my doctor at that time was hoping itp was acute, not chronic, because the most part of children don't develop chronic itp.
Imagine to be guilty for every person in the world who suffers extreme poverty, illness, and many other problems. 
Allow yourself to feel free from itp, and also part of the community because we, al itp patients, need people to talk to, who understand us :) 
11 Nov 2021 16:00
  • MelA
  • MelA
Mum
Cindy I was pleased to see more of your wonderful photos on the site!  You make me smile!
Category: Social Chat
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