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Platelet Transfusions and IVIG not working 7 months 2 days ago #72187

  • antonioshirl
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Hi! I am a newly diagnosed chronic ITP patient. My first platelet drop was in 2018, when I had my annual physical exam cbc at the hospital, I was working at the moment. It was 149 and not too bad, but I was still referred to a Hematologist. We monitored my cbc every month and it never dropped to <100 until I got here in the US. I dont know if it’s the COVID vaccine or booster last December that triggered it but this sudden drop only happened this January 2022. Thank God I am asymptomatic, no bruising or bleeding. If I didn’t know about my count, I wouldn’t be too worried.

I had my bone marrow biopsy last Nov 2021 and it confirmed my ITP. I am currently in a hospital for 5 days now for my first IVIG treatment and first ever platelet transfusion. I am also taking 80mg of Prednisone since I was admitted. Apart from that, I also received 8 bags of platelets but both treatments dont seem to be working since my platelet trended lower to 6. It is really frustrating since I am still on that phase where I have to figure out which treatment will work for me. I know it can take a while. I should be patient, but I know a lot of people understand me too. We all want to live our lives normally. It is really making me depressed and anxious especially that this hospital doesn’t allow visitors. I cry everyday. They wont let me out unless I hit a double digit count but this hospitalization is just making everything worse because of the environment and stress. I am planning on signing AMA form and just continue getting treatment as outpatient. Just really have to be careful and praying nothing bad happens.

I have been reading a lot of personal stories here and it really gives me hope that one day I will also find the right treatment for me. I’m really grateful for this group for giving me hope that I can still live my life normally. Thank you everyone.

As for now, I am planning on seeking a second opinion. Looking for a hematologist in LA California who is proactive, has great rapport with their patients and who is willing to work with me through a shared decision approach. Right now Im really not satisfied with my hematologist and this hospital I am in. I barely talk to doctors and just relay information from the on-call hematologist. They want to start Rituxin/Rituximab, and I have read that the effects can take awhile. That’s why I wanted to sign the AMA form too because I’m worried I’m just staying here while I can wait for the treatment to kick in at home. Really just
worried about the hospital expenses and all so I’d rather be treated as an outpatient.

I’m really hoping to get MD recommendations, so please if you know anyone in LA, please recommend them. Thank you. 

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Platelet Transfusions and IVIG not working 7 months 2 days ago #72188

  • MelA
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www.uclahealth.org/providers/search?s=Hematology%20Oncology&f%5B0%5D=super-doctor%3A1

I know not a thing about the Los Angeles area.  Would this site be a place to start?  You could call the department and ask if they have a hematologist/oncologist who specializes in blood disorders like ITP.     I am fortunate my new hematologist has a passion for blood and ITP, thankfully I do not need treatment at this time.

I'm amazed you were referred to a hematologist with a count of 149k - that is in the normal range for some labs.  

Regarding platelet transfusions - once given the body will cover those platelets with antibodies and as they float through the body the blood cleaning areas will detect the antibodies as foreign and do their job of cleaning the blood and destroy those platelets too. [that is what I was told]

I wish you could let go of some of the anxiety and depression since that does you no good at all - but I understand, been there done that but I was lucky to be planning an overseas move w/my husband and children so that did take my mind off of ITP sometimes.

Hang in there.   Good luck finding a doctor you are comfortable with and who will get to know you and help you.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Platelet Transfusions and IVIG not working 7 months 2 days ago #72189

  • antonioshirl
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Thank you! 

May I ask if IVIG and steroids worked for you when you tried it? 

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Platelet Transfusions and IVIG not working 7 months 2 days ago #72190

  • MelA
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When I was diagnosed in 1989 the treatments offered were prednisone or splenectomy - I opted for prednisone since a splenectomy could not guarantee a cure.  I think IVIg was around then but it wasn't used where I live - which is just as well since we believe a gamma globulin injection is what triggered my ITP - anyway I have only had prednisone and then in 2002, if I remember right, a tetanus booster sent my count way down and I had an IV of WinRho, those are my only 2 types of treatments.  A normal count I don't have, but do have a decent one.

I did have a hematologist tell me that he had never had a patient go into remission using IVIg.  
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Platelet Transfusions and IVIG not working 7 months 1 day ago #72192

  • midwest6708
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When I'm looking for a new doctor for any reason, I check the websites of the health care systems, searching for a list of doctors in the general specialty I need.  Then I read all their biographies to get hints about their particular interests.  I just now checked the link Mel posted for you and found that most of those doctors focus on blood and other cancers, not necessarily on "benign" blood diseases like ITP.  That's what I've found where I live, too.  I did find just one hematologist in a large university health system with an ITP/TTP focus.  I saw him in the hope he'd have a cutting edge, perfect solution for me.  Sadly, he insisted on splenectomy, which by that time was already on the decline as a second line treatment.  He said it would "cure" me.  I already knew that to be untrue and had decided it would be the one treatment I would never agree to.  He practically shoved me to the door when I refused it.  So much for teaching hospital doctors.  They aren't all what you'd expect. 

I went back to the hematologist who had treated me for years before, even though cancer is his main focus.  He works with me, never argues, and allows me to make decisions for myself.  He listens with interest when I bring him info about research or meds that he hadn't heard of before.  He may be the kind of doctor you want, rather than a pseudo-know-it-all who is dictatorial and knows no compromise.

For the record, platelet replacement has never been a recognized treatment for ITP.  It's only given in the event of catastrophic bleeding.  That's likely why it isn't working for you.  There's a hypothesis floating around out there that suggests donor platelets might ramp up antibody activity that destroys platelets at an even faster rate.  And IVIG is a so-called "rescue" treatment that works for most in the short term only, not on a prolonged basis unless repeatedly administered.  Also for the record, even though my platelet count has been in the single digits many times in the past, my doctor has never hospitalized me for it.  Not every MD insists on that.  You don't need to endure it if you find a doctor who doesn't panic easily.  

Over the years, I've been treated with prednisone, a few rounds of an IV steroid, Rituxan, and currently NPlate.  There are other treatments besides those.  You have a lot of options you haven't tried yet.  Read up on all of them so you can be prepared to discuss them with the new doctor you find.  That information and more can be found on this website under the Patients & Caregivers>Disease Information tabs on the home page.  Check it out if you haven't yet.  Learning as much as you can absorb about this condition will ultimately be your best defense against stress and depression resulting from it.     

Hope this helped at least a little.  

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Platelet Transfusions and IVIG not working 6 months 4 weeks ago #72193

  • gozorakgogo
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what was your platelet level when they decided to hospitalize you?  Mine was 2 when I was suddenly struck by ITP a couple years ago and I was told that I had to go into the hospital immediately. I was in for 10 days combined. Prednisone, IVIG, and platelet transfusions had only minimal effects. It was only after 4 infusions of Rituximab and weekly Nplate injections for 4 months that my level elevated over 100 where it has remained with no treatments for a year and a half now.

I dont understand why there would be any concern or interest with a level of 149. In fact my Hematologist doesnt even concern himself with what my levels are anymore. So long as they are at or above 100 His only concern is whether I am showing any signs or symptoms of bleeding and or bruising.

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Platelet Transfusions and IVIG not working 6 months 4 weeks ago #72194

  • poseymint
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Glad you found this forum, there is a lot of great information here. Link is to a doctor in Los Angeles area that is considered an ITP specialist. He has treated a couple people on PDSA forum in the past.

keck.usc.edu/faculty-search/howard-liebman/

Its important to look at symptoms and not just the platelet counts. I have had platelet counts as low as 1 and never been hospitalized. Doctors who are experienced with ITP know that its important to look at symptoms. LIke you, I don't tend to have much bruising or symptoms. I have never had a platelet transfusion because they don't work and are used only in an emergency situation plus there can be allergic reactions to blood products. A low count is not necessarily an emergency (though of course it can be for some people). It seems we have all had to stand up to doctors until we find someone who will listen. I am on my third hematologist and he is the best (San Francisco area). He lets me make decisions, he doesn't over-react and defends me when the nurses and other staff act as though I am in a crisis. I have tried steroids, Rituxin, Promacta and am now on Nplate which is a weekly injection. Nplate keeps my counts in a safe range which is 20-35. Today my counts are 15, not a problem and not unusual for me, but since they have been in the teens for 3 weeks I might call to have my dose increased a bit.
Take care, read all you can and trust your instincts. Like others have said there are many options. Good luck finding your perfect doctor and your answers!

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Platelet Transfusions and IVIG not working 6 months 3 weeks ago #72198

  • antonioshirl
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Thank you so much for sharing your experience. Has made me feel better about trying new treatments. I had my first shot of NPlate yesterday. Apparently they still wouldn’t release me until my platelets hit 2 digits. It has been 6 for the past 3 days. 

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Platelet Transfusions and IVIG not working 6 months 3 weeks ago #72199

  • antonioshirl
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Thank you so much for sharing your experience. They stopped giving me the platelet transfusions since it’s not doing anything and I mentioned that I’m scared of developing more antibodies from the donor’s plasma.

I started NPlate yesterday. We started on a low dose. And I’m still in the hospital for the 8th day now. My count has been stable at 6 for the last 3 days. My doctor isn’t comfortable discharging me still unless I hit double digits which is insane because I heard that Rituxan and NPlate could take awhile to take effect. 

I’m just really frustrated and stressed right now and I hope I had the kind of doctor that you had who don’t easily panic when I hit single digit.

Do you get anemic when you get your period? 

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Platelet Transfusions and IVIG not working 6 months 3 weeks ago #72200

  • antonioshirl
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2/18 i had my outpatient cbc and my plt count was 17
2/19 hospitalist/doctor called me to check into the ER to get 2 bags of plt transfusions
2/21 I had a repeat cbc as outpatient again and they called back again saying I should get more plts and start with ivig since my count went down to 13 even after the transfusion
2/22 they admitted me until today
2/23-2/27 5-day ivig treatment and 10 bags of plts (2 bags each day) - didnt do anything. My count trended even lower from 17-13-11-8-7-6-6-6 today

Did you have to stay in the hospital until the Nplate took effect? At what count did they discharge you? My doctor has been telling me they cant release me yet until I hit double digits. 

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Platelet Transfusions and IVIG not working 6 months 3 weeks ago #72201

  • antonioshirl
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Hello. Thank you for sharing your experience. My supportive husband found this website. We’re really thankful for all the information and help we get from here. 

I tried to schedule an appointment with Dr. Liebman but his office didn’t respond yet. I’m still in the hospital and I guess will just have to try again and see him after I’m discharged.

I also believe that signs and symptoms should matter more than the count. But apparently, the doctors who have been seeing me while I’m hospitalized, especially my own Hematologist, have been scaring me about the possible risks of going home with a single digit. They said I could have sudden bleeding and with the low count that I have, it’s really dangerous. That really took the courage out of me to sign the AMA form.

Since I had my period while I’m here, they’re watching out for my hemoglobin. I started my period 2/24 and it was only super heavy on the first 2 days. Now it’s almost done and my hemoglobin has been stabilizing. I only have 2 small hematomas on my left antecubital due to the daily poking and one greenish bruise due to a failed poke attempt. Not too bad as I have been applying hot packs.

I don’t really have nosebleeds but since my hospital stay, my nostril got super dry and got scabbed and it bled when the scab was accidentally removed. I’m treating it with Vit A and D ointment. 

We started NPlate yesterday but on a low dose first. Hopefully it’ll work for me too. But I just couldn’t stay and wait for my count to go up. I just hope my count would at least go double digit so they can discharge me. And wait for the effect of NPlate as an Outpatient

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Platelet Transfusions and IVIG not working 6 months 2 weeks ago #72226

  • h2ofun1
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Man are we all different. 2 months ago I went into the ER with a count of 4. Had 3 bags of platelets and 3 bottles of IVIG.  My number went up to 109 and was released in 27 hours.

Was given cbc every 2 days and went back down to 6.  Had 1 bag platelets, and 75ml of ivig.  Went back to 89.

It has been going up and down about every 10 days for 2 months now.  I just had 70ml of ivig again on Friday.  I guess I am lucky my
count has gone up into the 80's with ivig.  Because of this, not sure I want to try and  meds for a while, since many seem to have
side effects with this, and for many they either do nothing or do not last long.

I go to get a second opinion at UC Davis end of April. I hear already he does not like using ivig. IMO, that MY call.

Here is a great slide I found and have been adding to at 

www.facebook.com/groups/Idiopath

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Platelet Transfusions and IVIG not working 6 months 2 weeks ago #72227

  • MelA
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My hematologist of old [have a new one closer to home] told me he never had a patient go into remission with IVIg.

The platelets received in a platelet transfusion get covered with the antibody and will be destroyed in the areas of the body that clean the blood.  

When were you diagnosed with ITP?   It sounds like your count goes up with IVIg but then goes down again right?

Good luck - let us know what the doc at UCD says.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Platelet Transfusions and IVIG not working 6 months 2 weeks ago #72234

  • h2ofun1
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Never say never  :)

IVIG and platets are different processes.  I only have gotten platelets if I am in the single digits.

Diagnosed start of Jan. 2022. Probably had for months before this.

My count goes up about 60 with IVIG and down again over like 12 to 15 days, so far.

UCD doc sounds like he want to only use meds, not ivig, which is not my choice at the moment.

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Platelet Transfusions and IVIG not working 6 months 2 weeks ago #72237

  • JJ
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Unless there's a bleeding emergency, you can assume that a doctor who gives platelets for ITP is not experienced in treating ITP. Everyone needs a doctor who is experienced in their particular disorder or disease.

Immunoglobulin infusions are only ever temporary. It is extremely expensive and in short supply. Proper treatment is available.
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Platelet Transfusions and IVIG not working 6 months 2 weeks ago #72239

  • mrsb04
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I agree with  JJ
Platelets should not be given unless it is an absolute emergency to stop bleeding because, as Mel A has stated, they will quickly be removed. What a waste of precious donations. 
IVIg is a rescue remedy not a treatment, using it as such is downright irresponsible to say the least. It requires multiple plasma donations to produce one vial. 
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Platelet Transfusions and IVIG not working 6 months 2 weeks ago #72241

  • h2ofun1
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Sure glad my doc does not agree with you.  It IS a level 1 treatment.

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Platelet Transfusions and IVIG not working 6 months 1 week ago #72245

  • mrsb04
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h2ofun1
You wrote It IS a level 1 treatment. Is that platelets or IVIg you are referring to? I would be very interested to see your evidence base in support of that statement. 

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Platelet Transfusions and IVIG not working 6 months 1 week ago #72249

  • MelA
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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.  
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Platelet Transfusions and IVIG not working 6 months 1 week ago #72250

  • JJ
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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.

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Platelet Transfusions and IVIG not working 6 months 1 week ago #72251

  • gozorakgogo
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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. 

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Platelet Transfusions and IVIG not working 5 months 2 weeks ago #72305

  • VVeenM
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Hope things are much improved for you now. Take care!

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