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26 Nov 2022 09:42
  • mrsb04
  • mrsb04
If you are worried best get it checked out 
26 Nov 2022 16:38
  • MelA
  • MelA
You are smart not to rush pred as you have been on it a while - and as I said, that stuff is nasty!!   I know in my heart prednisone caused problems with my knees & shoulders and made my skin thin.   
26 Nov 2022 16:52
  • MelA
  • MelA
As mrsb said, if you are worried get your eye/s checked out.   When you say 2nd one in a week - do you mean it happened in the other eye or same eye?   

I started getting that back in 1989 after diagnosis - it happens every now and then so I don't get bothered by it.   Sometimes I don't know it until someone says "what happened to your eye?"      Once I had one and happened to have an eye exam scheduled, the doctor wasn't impressed and said it will go away.  He said that can happen for various reasons.  

However, as my signature says:   "Instead of wasting your time worrying about symptoms, just get it checked out" - Nieca Goldberg, MD
26 Nov 2022 21:46
  • Chad89
  • Chad89
Hey Mcafiero. My name is Chad. I too was in remission for 13 years. I’m 2007 I had ITP at the age of 18 and was put on prednisone for a month or so. Everything went back to normal and everything was fine until 2020 when I noticed the same petechiae on my feet and bruises. This time it was harder to get it under control. Steroids didn’t work and then I did the IVIG for a temporary fix. My doctor had me go in for two rounds of Rituxan and so far that has been holding it seems. It’s been a little over two years since then and my counts have been in the high 200-300k range. Please let me know if you have any questions or just want to talk. 
27 Nov 2022 05:50
  • mcafiero
  • mcafiero
Thanks, Chad.
It seemed the Prednisone wasn't doing much for me this time around, but now I've been thrown a curveball. Here's how it's gone so far:
80mg /day week 1 (that sucked) - counts at 80
60mg/day week 2 (that sucked, too) - counts at 57
40mg/day week 3 - counts went up: 122 "the curveball"
I'm on 20mg/day now. Getting my next counts on Tues. So far no symptoms 
If for some reason they crash down again lower than 30, sounds like my hematologist is interested in trying Promacta. But it sure would be nice to see the counts continue to rise back to my normal level. Normal for me for the past few years has been in the 160-170 range.
27 Nov 2022 10:10
  • Chad89
  • Chad89
Yeah the prednisone is not fun. Hopefully they hold at a good level. Fingers crossed for you. So weird that after 13 years something triggers it right? 
28 Nov 2022 16:45
  • Hillary3
  • Hillary3
Hello! I had a baby girl on 6/12/22. Went in for a regular check up with my pcp in September and had low platelets and they have been dropping ever since. I had a normal pregnancy other than gestational diabetes. I was sent to a hematologist and started on 40 mg dexamethasone and have been tapering off that since 10/6/22. I tried prednisone but had a bad reaction to it-though after reading here I may have been just having a hard time coming down from the 40 mg of dex. But bc of that I have been tapering with dex and having a hard time sleeping, gaining a lot of weight and just been exhausted. My numbers have been dropping since the taper and we’re 53 today 11/28/22 and my hematologist wants me to start rituxan infusion on Wednesday. I am 30 years old- would you seek a 2nd opinion before starting the infusion? Or even after I start it? There is no one else local but I could drive 2-3 hours to either Atlanta or Nashville but I’m wondering if they would just tell me the same thing.  Below is my platelet count on different dates and the mg of dex I was on. Would love any feedback!


80 something 9/7.   55 9/12.    58 9/16.   59 9/19.    57 9/21.    45 9/26.  47 9/28.   20 10/6/22  -40 mg dex.   230 10/11- 8 mg dex.   179 10/18/22 4 mg dex.  124 10/24/22 4 mg dex.   166 10/31 2mg dex.  113 11/8 1mg dex.       75 11/15 1mg dex.    75 11/18 1mg dex.     81 11/22 1 mg dex.     53 11/28 .5 mg dex 
29 Nov 2022 02:20
  • mrsb04
  • mrsb04
Personally I would get off dex and see what happens. Nowadays, unless the patient is symptomatic, treatment is usually withheld on a count above 30.
If it went below 30 I would go see a different haemo. 
30 Nov 2022 14:46
  • Falcons1
  • Falcons1
I was diagnosed with itp in 2013 count of 120.  My last count 11/29/22 was 76 my lowest.  What can i expect down the road, i am 72 years old and in good health other than itp.  No medications except for blood pressure pill once a day which is good.
01 Dec 2022 17:26
  • midwest6708
  • midwest6708
I'm glad to say you're still in good health, despite an ITP diagnosis.  Your present count is enviable, and I'd be happy to have it if it meant I could forgo treatment.   I'm 72 and have been in the ITP boat for many years.  There is nothing about it that can be "expected", either now or down the road.  I haven't seen an identical case to mine in all the time I've been a member in this group, and no two others have been identical to each other, either.  There is no ideal guaranteed treatment for any given situation.  But I will say that you shouldn't even consider treating until your count gets to 30 or below.  That's an adequate count to handle most bleeding situations, for the exception of most surgeries.  Since the mortality rate for ITP is relatively low, and since the harsher treatments are responsible for at least half of those deaths, you shouldn't be in a big hurry to accept treatment if it isn't completely necessary.  

My advice is always that you should learn everything you're able to absorb about the disease and its treatments so that you're able to completely understand and approve of everything your doctor advises.  If you haven't yet, be sure to read all the information under the Patients & Caregivers tab on the home page.  Hope I've been helpful to you, at least a little.  

      
03 Dec 2022 09:51
  • joecirillo
  • joecirillo
I have platelets at 1. Did anyone experience this in the past. How long did it last? Did it reoccur
03 Dec 2022 18:57
  • JJ
  • JJ
Yes, I've had a count of 1 lots of times. When you find a treatment that works you'll get stable.
04 Dec 2022 00:14
  • MelA
  • MelA
joecirillo there really is no answer to your questions - what goes for one person doesn't go for the next person.
What is your hematologist doing for you now?   What treatment?   How long have you been at 1?
04 Dec 2022 06:42
  • joecirillo
  • joecirillo
Thank you. My platelets were at 1 for only a few days that I knew of. I received 2 treatments of IVIG and they rebounded to 120.  My concern is this happened in the past and they drop back to 1 pretty rapidly. Last time I spent close to a month in an out of the hospital before they stabilized.  I am also on Promacta which I just started which will hopefully keep them above 10. I am out of the hospital and do not want to go back. I have to see my hemotologist tomorrow for another CBC. If they are below 10 she will probably leave it up to me to go back to the hospital. Right now I have no symptons. The ER doctors freek out with platelets that low. My Hematologist is concerned but not panic stricken that is why she lets me decide. i guess the question is what does other people with  "panic low" platelets due. Do they stay out of the hospital or just go and lie in a hospital bed until they come up. My doc can give me IVIG in her office if that is what she thinks I need. 
04 Dec 2022 09:30
  • CindyL
  • CindyL
I have never been 1, but I did get down to 7.  My hema doc left orders with someone (not me) that if I got below a certain number, I was to go in for a treatment of WinRho.   Other than that, I have never been admitted to hospital.
04 Dec 2022 15:43
  • midwest6708
  • midwest6708
My count has been below 5 multiple times.  I've never been hospitalized for it, nor would I allow it.  I've also never had IVIG as a rescue, but I did receive an IV steroid twice.  I've always responded well to steroids, so that's my "panic" rescue.  

Promacta is a reasonable choice for you to try now.  Give it a fair chance.  You may have to titrate the dose upward multiple times before you get where you need to be.  If by chance it ultimately doesn't work, there are other TPO-R types of drugs that might.  There's also Rituxan, should you choose to try that.  Bottom line is, you have options, and you are the ultimate decider of the options.
  
04 Dec 2022 18:05
  • mrsb04
  • mrsb04
Symptoms are more important than counts. Each of us is different. Some of us can manage well with a count in single figures. Others cannot. You know your body better than anyone. 
05 Dec 2022 06:55
  • joecirillo
  • joecirillo
At this point I doubt I would agree to another hospital stay with a platelet reading of less then 10. Right now I have no symptoms but will find out today where my level is. The worse symptoms I had were petichia, bleeding gums, a mouth blood blisters. I did also have some servere bruising when I was first diagnosed. I was on plavix at the time and all the doctors some with out even seeing me said the bruising was a result of plavix. Luckily one cardio rehab nurse said you need to be seen. When I insisted I be seen they finally ordered a blood test and found my platelets were at 1. That is where the journey began. I consulted with one hemo doctor in the hospital last week and he said in 20 years of practice he only seen 3 patients with platelets less the 10 and one bled to death so that is a bit scary
05 Dec 2022 10:48
  • mrsb04
  • mrsb04
I have a stock of prescribed TXA tablets to take if I bleed. 
05 Dec 2022 11:30
  • joecirillo
  • joecirillo
What are TXA tablets? I Just came back from my Drs. She is a Hematologist with many years experience. After two treatments of IVig my platelets were at 121 on Friday morning of last week. Today only 3 days later they have dropped to 32. My doctor did not seem overly concerned and just said up the Promacta to 50mg and come back in a week for another CBC  She okayed me for work and all activity except contact sports. I have no symptoms at this point. I guess if my gums start bleeding again I should hit the panic button. That usually means my platelets are below 10. I appreciate all the advise. It is comforting.
05 Dec 2022 16:39
  • mrsb04
  • mrsb04
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. 
05 Dec 2022 17:04
  • mrsb04
  • mrsb04
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.
05 Dec 2022 18:39
  • joecirillo
  • joecirillo
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
06 Dec 2022 09:22
  • CindyL
  • CindyL
Aw, mrsb, I'm so sorry you're going through this.  Wish I could give you some of my platelets.
06 Dec 2022 13:14
  • MelA
  • MelA
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!!!
06 Dec 2022 22:39
  • poseymint
  • poseymint
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.
07 Dec 2022 01:45
  • mrsb04
  • mrsb04
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. 
07 Dec 2022 05:16
  • joecirillo
  • joecirillo
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.
07 Dec 2022 09:19
  • richellefleischer
  • richellefleischer
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.
07 Dec 2022 10:13
  • joecirillo
  • joecirillo
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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