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  • mrsb04
05 Dec 2022 16:39 - 05 Dec 2022 16:48
Replied by mrsb04 on topic platelets less then 10
IVIg does nothing for me. Promacta can take a while ie a few weeks to kick in so don't lose heart. 
TXA aka Tranexamic Acid prevents/stops/reduces bleeding by acting on part of the clotting system.
Very useful for nosebleeds or in my case a bleed in my lungs landing me in hospital. 
If I get blood blisters in my mouth count is very low ie in single figures so  I will take it for 3-4 days with a bolus  of steroids to get my count up. 
Of course the frustrating thing about ITP things don't stay the same. When my lungs bled I had no other symptoms of a low count. 
  • mrsb04
05 Dec 2022 17:04
Replied by mrsb04 on topic I am no longer on the drug trial
So my count on Friday was 5 and is 10 today. I am covered in bruises and have volunteered to put my pred dose up to 10mg/day for a few days. 
I have  had 46 platelet counts since I started Atorvastatin in February. Only 6 times has my count been above 20 since then and 17 times in single figures. Haemo has stopped the statin for 3 months. Be interesting to see if count improves.
  • joecirillo
05 Dec 2022 18:39
Replied by joecirillo on topic platelets less then 10
Thank you for the information. This is my second bout with ITP in 18 months. So far no bleeding issues other then gums. I will ask my Dr about TXA. Yeah blood blisters in the mouth seem to be that platelet levels are below 10
  • CindyL
06 Dec 2022 09:22
Replied by CindyL on topic I am no longer on the drug trial
Aw, mrsb, I'm so sorry you're going through this.  Wish I could give you some of my platelets.
  • MelA
06 Dec 2022 13:14
Replied by MelA on topic I am no longer on the drug trial
If the lower counts started w/the statin then it would seem that is the problem.  
mrsb you sure are having a time of it - I'm so sorry!!!
  • poseymint
06 Dec 2022 22:39
Replied by poseymint on topic platelets less then 10
I have had platelet count of 1. My hematologist looks at symptoms along with numbers. I had no symptoms so I took 20mg prednisone and drove home. Predinsone is my rescue treatment. I started on Nplate then because you don't want to be on steroids long term- too many side effects.
I am on weekly Nplate. I don't appear to have any side effects from it. It is similar to Promacta except it is an injection. My counts are usually between 20-38, not normal counts at all. If I go below 20 I don't worry about it. Its not necessary to be over 100, just a safe count which is above 20 or 30 for most people. Although for a couple years my counts were in the teens and often below 10. I learned that I am okay with low counts. The treatments can be as bad as low counts for doing harm. Your doctor sounds like she knows to not over-react to low counts. And to not over-treat. Promacta is a good drug with an 80% success rate to bring counts up to a safe level. Also some people go into remission on Promacta and Nplate meaning they can stop taking the drug.

When I was new to ITP 12 years ago, I went to the ER with a count of 6. The doctors looked at me like "Whats wrong with you?" They were looking at symptoms. I sat there for 4 hours then was sent home with prednisone and was told to call a hematologist. That visit cost me $2500. and took me 2 years to pay it off. I will never go to the hospital for ITP again. Nurses have begged and threatened me to get me to the hospital for a platelet transfusion. My count was 7, I refused and was totally fine. You will get to know your body and symptoms and become able to judge your own risk tolerance.
Another thing that helped me is to learn about the "clotting cascade". There are around 50 chemicals that assist with blood clotting. Clotting is too important for the body to rely on platelets alone. So when there are not enough platelets, the other chemicals can take over to some degree.  That is not to say that there is no risk but its just to say that your body can compensate so thats why we look at symptoms also.
  • mrsb04
07 Dec 2022 01:45
Replied by mrsb04 on topic I am no longer on the drug trial
Mel
Maybe more a case of the statin not allowing my counts to climb  as they had been low for a couple of months before I started taking it. 
  • joecirillo
07 Dec 2022 05:16
Replied by joecirillo on topic platelets less then 10
Thank you Poseymint! Your response is so comforting to me as I sit here wondering where my count is. I am hoping Promacta is keeping me above 10. I seem to start exhibiting mild symptoms when I get into single digits, petichia, bleeding gums and mouth blood blisters. So far no symptoms so your response and no symptoms is keeping me calm until I get a blood test in 5 days. Hopefully my levels have stabilized above 10 and I can breathe a sigh of relief. Thanks again for your response. If you do not know it already, you might be able to get Promacta for free. Novartis has a program based on income. I could never afford the 10,000 dollars a month this drug cost if not for that. I was going to go on N-plate last time this happened if I was not approved. I know weekly injections could be a problem vs just taking a pill everyday. Good luck to you and I hope all goes well. Steroids do not work for me. IVIG brings a rapid platelet rise but it is short term.
  • richellefleischer
07 Dec 2022 09:19
Replied by richellefleischer on topic platelets less then 10
I have recently been diagnosed when I had petichia on my hands. Found my platelets were 1. 

During first hospitalization, IVIG, IV steroids and platelet infusions didn’t work. Nplate did. after 5 days and was discharged with platelets of 96 with a second dose of Nplate. Over next 2 weeks, platelets shot up to 769 while just on prednisone. A week later, I was readmitted to hospital (where I am now) with platelets of 2.

Have others experienced the explosion of platelet numbers like that?

 I have a different hematologist this time who is attributing the rapid rise post discharge to the IVIG even though it didn’t seem to do much in the hospital. I got more IVIG 2 days ago…platelets rose to 5 only to drop to 1 today…

Would appreciate others thoughts.
  • joecirillo
07 Dec 2022 10:13
Replied by joecirillo on topic platelets less then 10
I am sorry you are going thorough this. It is very scary but this is my second go round. Some of the others posting on here have been comforting to me. Many have had platelets in the single digits and have made full recoveries. From what I read having low platelets with no symptoms says I should be concerned but not to panic. My experience with IVIG has been good. I have had 5 timed. Each time it brings my platelets up to 100 but unfortunately they drop pretty quickly within a week. My first go round with ITP went into remission and my platelets went back to normal with no medicine. I was on Promacta for about a month but was weened off it. I am hoping I have the same luck his time. One does of IVIG and my platelets recovered to 120 but quickly dropped to 32 3 days later I am hoping Promacta will keep them above10 which is somewhat safe. I  will know in 5 days when I get a blood test. Good luck Hang in there so many have gone through this. ER doctors can scare the hell out of you. This is a rare disease. They have no experience with it and panic giving you platelet transfusions and steroids that for many does not work. You do not know how many times I heard ER doctors or nurses say they never seen plates at 1. Get a good hemo doctor and they will figure it out.
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