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06 Oct 2021 00:34
  • poseymint
  • poseymint
So I got labs done today and surprise- my counts did NOT drop from the booster vaccine!
Last week I got labs and platelets were 29. Next day got the Moderna booster. 7 days later (today) got labs and count was 28.

I'm so glad because I didn't want my Nplate dose to be increased. But I'm surprised because my counts fell after the second vax.? Seems odd that my platelets stayed stable after the first and the third vaccine. ?! Typical ITP, unpredictable.
05 Oct 2021 21:20
  • MelA
  • MelA
Ahhhh - thanks!   I'm glad you got your booster - wish I could get mine.  I can get it but I'd like my HMO to give it to me and I've heard nothing yet from them.   I think all of us with more than 1 auto-immune disorder/disease should be getting the booster and soon!   

I got my flu shot 2 weeks ago in anticipation of the Pfizer booster being approved - I've read it's fine to get both at the same time but I'd just as soon not have my immune system working on too many things at once.  
03 Oct 2021 14:20
  • poseymint
  • poseymint
Mel- You are right, Moderna is not approved for people over 65 but is approved for immunocompromised. I am diagnosed with several auto-immune disorders along with ITP- rheumatoid arthritis, Lupus, Sjogrens and am on medication for those disorders. Even with all that, I still don't fit the criteria exactly as I'm not severely immunocompromised. I actually would have rather waited until Dec- Jan when Moderna is approved. But I have had two doctors tell me to get the booster, one doctor wrote into my medical record "Immunocompromised due to drug therapy" so other doctors are seeing that. Plus its been 8 mos since my second dose, I had some time off work and there is an abundance of vaccines here- every appointment in the county is open, so I decided to go ahead and get it now.

Also I'm seeing in the news that Moderna wants to give a half dose booster. They are having trouble keeping up with the world-wide demand and says the public doesn't need a full dose booster. So the half dose will have to be studied and approved. I imagine that will take some time but seems like a reasonable idea. The advantage may be fewer side effects.

Cindy- Yes, I was told I could get the flu shot along with the Covid booster. No thanks. I don't want to push my immune system into overdrive. I am very pleased that my inflammation symptoms seem to have calmed down 5 days after the vax. I will wait probably 3-4 weeks before I get the flu shot. Stay safe everyone!
03 Oct 2021 10:18
  • CindyL
  • CindyL
I found out a couple of days ago I am eligible for the booster shot now.  But I think I am going to wait until after the 22nd; that's when we get our flu shots.  The pharmacist said I could get them both now, but I'm not comfortable doing that.  But I will be getting the booster. 
03 Oct 2021 00:23
  • MelA
  • MelA
I didn't realize the Moderna booster had been approved yet - Pfizer yes but not Moderna.
02 Oct 2021 20:58
  • poseymint
  • poseymint
I received my third dose of Moderna 4 days ago. Labs were done the day before with a platelet count of 29. My side effects were about the same as the second dose, except that I took Tylenol for the second dose and this time I didn't take anything. I slept for 24hrs with fever 100-101, mild headache, body aches/myalgia, fatigue. I felt okay after 48hrs.

On the third day after the vax, I began to have some symptoms of low platelets, very slight bruising, tiny spots of blood when I blow my nose. Now those symptoms have gone away so I imagine my counts have dropped but its hard to say. My symptoms don't always correlate with counts. I will get labs done in a few days. I will update then.
02 Oct 2021 18:53
  • MelA
  • MelA
Hi agarr7 - I'm an adult with ITP so I really know anything about a child with ITP.   But believe me I do know how frightening it is to have a child who isn't well.   It sounds like you are doing all the right things.  And it sounds like her platelets are increasing without any help - I hope that continues.  I believe today was another blood draw for her - please let us know how she is doing.

Hopefully someone with an ITP child will be here soon and respond to your post.
Take care and keep us posted! 
Category: Newly Diagnosed
02 Oct 2021 18:48
  • MelA
  • MelA
Synthroid is the brand name - Levothyroxine is generic.   They are the same thing but they aren't the same thing.   
Yeah, Cindy my PCP told me my TSH was so low it couldn't be read so I was super hyperT - ugh.   But I was thin again like I was when I got married - not any more though.

 Yes - we are not diseased, we are disordered ;)
 

 
02 Oct 2021 12:53
  • Chad89
  • Chad89
Hello. Sorry his ITP is back. I was in remission for 13 years. I had it initially when I was 18 in 2007. It went away and it came back last year. No clue why. 
02 Oct 2021 09:38
  • CindyL
  • CindyL
Mel, my numbers were so low, my doctor was surprised I walked into his office. According to what I'm taking now, it's Levothyroxin (Synthroid).  One must be a generic name.  I have been on the levo the longest.
Kristi, I tell people I have a disorder, not a disease.
01 Oct 2021 19:12
  • MelA
  • MelA
Kristi I'm very sorry your Dad had those strokes - bless him and bless you too!!  And then your 4-legged family member is ill, that hurts for sure.

I was diagnosed ITP in 1989 and Graves in 2002 [that's when thyroid killed off] - my hematologist & endocrinologist did not want me to take anti-thyroid drugs to try to get Graves under control.  

Cindy - you changed thyroid meds?   Once on a brand one should stay on that brand - unfortunately I was started on Synthroid, when we went with the HMO they changed me to Levothyroxine since it is generic - it took me & my new wonderful endo a couple years to figure out why I was having such a horrible time, it was due to the change in brand.  Once back on Synthroid I've done better but not all that good.

Oh Kristy - you do not have a disease you have a disorder.  I've never let it be said that I have a disease - ITP really is a blood disorder and I'm sticking too it :)  
01 Oct 2021 04:32
  • mrsb04
  • mrsb04
A plant based diet has made no difference to my counts 
30 Sep 2021 20:07
  • agarr7
  • agarr7
Hello everyone! I'm new to this forum. I'm glad that I found it because I need to connect with others who are going through a similar thing. I've been on google day and night just researching anything I can about this disease. 

My daughter started exhibiting a small petechiae rash at the end of August. I initially chalked it up to a viral thing, so I didn't think too much of it. A couple of weeks prior, I took her to a story time session for kids at the public library so I thought that she caught some viral thing.
The petechiae rash started to spread all over her body. At the same time, I started to notice these large bruises popping up all over her body. A majority of them were on her shins, and since she's a toddler, I just assumed it was normal. To confirm that everything was okay, I decided to make a pediatrician appointment after the petechiae didn't go away after around 2 - 2 1/2 weeks. 

The pediatrician decided that we should get some blood work done to see if she has a blood-clotting disorder. After they received the results, they called me and said I have to immediately take my daughter to a children's hospital because her blood platelet level was 7 (7,000). I didn't understand this completely but I took her to the hospital. At the ER, they ran her blood again, and her level was at 9. They told us that they would discharge us since my daughter wasn't actively bleeding and didn't appear to have any other issues. They told me to make a follow up appointment with the hematology department. 

We went to the hematology folks two days later. Her blood platelet level was at 12. We decided to do a watch and wait method. We don't know if she has acute or chronic ITP. The doc said that ITP cases in kids her age usually go away after about 6 months, however, we're scared. The hematology people want us to get blood work every 2 weeks to monitor her progress.

We are due for blood work this Saturday and I'm genuinely terrified. The petechiae rash is still present (in fact, there might even be more on her body) and her bruising is still present. She also has a few blood blisters in her mouth and small petechiae patches in her mouth. I think she's had ITP for about a month-ish. I was hoping it would start to look better, but it's hard to tell.

Until she is actively bleeding, we don't plan on providing her with medications (unless her doctor thinks it's necessary). Right now they don't think she needs it (knock wood), but living with a 2 year old with ITP is terrifying. I'm so scared that she's going to fall and get a horrible injury. I bought her some comfy knee pads and I've been giving her a really healthy and clean diet to see if that helps. I have also been giving her some beet juice. 

I'm just praying that her platelet levels are naturally increasing. I just wanted to vent because this is so stressful. Thanks for reading. Feel free to share your own stories with me if you're going through something similar.
Category: Newly Diagnosed
30 Sep 2021 18:21
  • erameyer
  • erameyer
My platelets were in the 30's and I changed to a complete plant based diet 10 years ago and my platelets increased to 70's and have been stable at that level since then. My doctor believes that it must have been the reason as a plant based diet is an anti-inflammatory diet. 
30 Sep 2021 09:29
  • CindyL
  • CindyL
My thyroid issues started long before my ITP.  Have been on Synthroid and Levothyroxin (which I am on now) with no problems.  Back when I was diagnosed with ITP, I was taken off all meds to see if it was one of them causing it.  But it wasn't.  Still don't know what caused my ITP, and at this point I really don't care.
29 Sep 2021 16:47
  • Kristi
  • Kristi
Thank you MelA. It's strange because five years ago, I was on Synthroid for about 6 months, and then went off it and I didn't have any ITP relapse. I am really hoping it won't cause major issues with my platelets. My original ITP diagnosis (16 yrs ago) happened after a bad flu/cold virus I couldn't shake all winter. But this time around, I can't figure out any other health reason. I have been feeling run-down all summer and under stress and not sleeping, while taking care of my Dad (post 2-strokes for him), and also dealing with a chronically ill dog that prevents me from getting quality sleep. I keep hoping to find the cause of the relapse, but I guess with this disease, it's sometimes impossible to predict. I so hope to find some kind of remission again. I will never take another day of remission for granted again, that's for sure.

I hope everyone else who has relapsed also finds success with getting back on track. My heart goes out to all of you. It's so easy to feel alone when dealing with this. And the shock after a long remission is crazy. I am 22 days into my relapse and I still wake up feeling like this must be some kind of bad dream before reality sets in. 
29 Sep 2021 12:37
  • MelA
  • MelA
Years back there was someone here who developed ITP after Graves Disease diagnosed.  Can't recall if it was due to the anti-thyroid meds or just good ole ITP.   I take Synthroid after Graves was taken care of and I went hypothyroid - Synthroid never has messed with my platelet count - but my TSH goes up and down and all around.
 
Take care - hope your count stays decent while tapering and off steroids Kristi!
27 Sep 2021 19:31
  • Kristi
  • Kristi
I had ITP 16 years ago, with a platelet count of 2. They did IVIG, platelet transfusion and prednisone with a slow taper and I was one of the lucky ones, where my platelets held and remained in the 250-360 range for 16 years. Now, it's back. A sudden crash to less than 3 a few weeks ago, for no apparent reason, and I was hospitalized for days. The only thing that might be a reason is I developed Hashimoto Thyroid autoimmune disease and my Endo started treating me with Synthroid for the past couple of months. The hematologist said the Hashimoto possibly triggered the ITP again, but nobody really knows. I have the expected sense of devastation, as while I knew theoretically it could come back, I really thought after 16 years, it was a blip in my health history and hadn't given it much thought for the past decade. I've had the same therapy as my first go around and they will probably try to start tapering my steroids next week, as my platelets are back in the 300's at the moment. I'm terrified that I won't be as lucky the second time around. As a person with high anxiety and prone to panic attacks, this is a very challenging autoimmune disorder to have.  
27 Sep 2021 10:29
  • sleev-les
  • sleev-les
Agree with mrsb04.  Long term steroid use isn't worth the effects IMO.  83k is great and know if I could hold 50 or higher I wouldn't be on anything.  I'd avoid the steroids.  
27 Sep 2021 07:08
  • mrsb04
  • mrsb04
My advice is stick with 50mg Promacta for a bit longer and see what happens. 83K is a great count. Why take steroids unless absolutely essential ?
26 Sep 2021 06:04
  • GrouchoMarx
  • GrouchoMarx
Promacta started to work steady for over year now after some mysterious set back.

Here is my question. 

With a rate of 75/50, dose of Promacta my platelets are 153K.

When I reduced to 50 a day it dropped in one week to 83 K.

My doctor knows that just 2,5 mg of prednisone do wonders to me, even if taken every other day.

He is proposing to stick to 50mg of Promacta and use 2,5 mg of prednisone every other day. 

The question is:

Is it more damaging 2,5 mg of prednisone every other day or 25mg of Promacta every other day?

Your advice would be much appreciated. 

Best
24 Sep 2021 06:37
  • sleev-les
  • sleev-les
Round 2 done this past Wednesday.  Counts are 160 this week.  I'm sure it has to do with the steroids as well, but I'll take it for now.
23 Sep 2021 14:39
  • JJ
  • JJ
Poseymint, I had the Pfizer jabs and no side effects at all. 
22 Sep 2021 09:21
  • CindyL
  • CindyL
Happy to hear your counts are stable where you want them, mrsb!
21 Sep 2021 22:29
  • Laur3n
  • Laur3n
Yea, my platelets jump after being sick and after antibiotics.
21 Sep 2021 21:55
  • EdwardJacob
  • EdwardJacob
Got 2 doses of Moderna at beginning of 2021. Platelets dropped 20 points. They have not come back up. I had Prednisone in me and I have suppressed IgA. I had a spike protein antigen test. Looks like I got about 30% of the protection that people get. I am considering a booster. But I have several other autoimmune diseases beyond platelets. After the 2 Moderna shots, my Reynaud's and Arthritis flared. That, on top of the platelet drop, makes me wonder about the risk of a booster. My hope would be to get my protection up as I am off prednisone now. But I'd hate to live through another flare and platelet drop. Although, Covid would be worse. Maybe I have to get the shot? 
21 Sep 2021 12:13
  • mrsb04
  • mrsb04
Last 2 counts  49 then 50, nice and stable. Haemo has given me a document to read regarding the PRN1008 trial. 
19 Sep 2021 10:13
  • lilicarot
  • lilicarot
What vaccine did you get? Did your platelets drop?
16 Sep 2021 19:45
  • poseymint
  • poseymint
I haven't heard of any shortage of Nplate either- I also checked around the internet for news about it. Like Janet, I also get my weekly injection at my doctor's office, a busy cancer clinic. I got my injection yesterday and didn't hear of any problem. I hope theres no shortage, many of us are dependent on Nplate. Perhaps its just a supply problem within the Walgreens system. I had problems with CVS pharmacy obtaining my thyroid medication. I switched to another pharmacy and have not had any problem since.
16 Sep 2021 12:25
  • midwest6708
  • midwest6708
I get my NPlate at my doctor's office.  They haven't mentioned to me any problem obtaining it.  But I have had issues in the past year with Walgreen's being out of stock on several different meds I've needed.    

If I were you, I would contact Amgen directly.  There's no notice on the website about shortages.  They may have no comment for you, but it's worth a try to ask.  I wouldn't mention Walgreen's specifically, but would mention - without any specifics - your difficulty obtaining it.  Their contact page is at www.nplate.com/navigator-sign-up

Just curious...  Do you self-inject?
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