TOPIC:

I have platelets at 1. Did anyone experience this in the past. How long did it last? Did it reoccur

Yes, I've had a count of 1 lots of times. When you find a treatment that works you'll get stable.

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?

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. 

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.

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.
  

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. 

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

I have a stock of prescribed TXA tablets to take if I bleed. 

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.

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. 

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

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.

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.

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.

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.

Thank you. I am in the hospital with platelets of 1…waiting for Promacta to kick in. Your post is comforting on many levels.

Hang in there it is scary. I was had platelets of 1 for over a week until they tried IVIG. I probably was a 1 for a month before I went to the hospital. I started exhibiting symptoms like gums bleeding, severe bruising and blood blisters 30 days before I went for a blood test. All my doctors thought it was normal bruising because I was on a blood thinner. So hang in there you will be fine

Discharged today with count of 14. Nplate and/or Promacta are slowly raising my levels. Emotionally will recover better at home returning twice a week for testing. Thank you for your support!

I'm so glad you have your freedom again. 
From my own experience, I would urge you not to make changes in your meds too quickly.  My own counts respond wildly to even the smallest dose change.  Once you reach a safe level, stopping altogether can put you back to square one in a heartbeat.  
Stay strong!

Great to hear!! My platelets have rebounded on Promacta. Like you, I was at 1. My rescue is IVIg that brought then back to 120 then crashed again to 31. I started Promacta and within 8 days I was back to 131 with weekly blood tests. On Monday I hope they held or went back to my normal which is 240. At that point I ween off of Promacta.  That is the only safe way to do it. I probably will go from 50 mg to 25mg. for at least a week. If there is not drop in platelets I will probably stop again like I did a year and half ago and just get monthly blood tests and look for symptons. Good luck!

richellefleischer
Congratulations in your escape from hospital.
I agree with midwest6708 that you change your doses very gradually for example with Promacta  same dose/new dose on alternate days for few days. 
I would also suggest only changing 1 med at a time otherwise you will not know if it is N Plate or Promacta that is working the  best. 

Thank you! That’s exactly what has not been happening…they threw so much at me they didn’t have a clue what was working. 

richellefleischer, congrats on being discharged.  Convalescing in the hospital with a new condition that you know little about can be scary.  The ER and subsequent hospital admission seems like such a confused mess. Multiple nurses, PAs, hospitalists, and nothing moves quickly. So easy for important information to get missed during patient handoffs. Many on this forum, including me, have been down the this path. Reading other's posts has helped me think about treatment options and that what works for one may not work another.  

The past 6 weeks have been a real battle for me. It began when I noticed the purpura in my mouth, some on my arms, neck, and back.  I knew my platelets were low and went to the ER. Count was 2K.  5 days of Ivig and dexamethasone, counts got up to 232K. The day after discharge I had a severe reaction with intense pain in my back and around my ribs, splitting headache. I thought I was dying. Back to the ER and another night in the hospital. First time I peed in the ER is was the color of coffee. Kidney tests were normal thankfully.  The never determined what caused the pain and blood in the urine but I believe it was the mega dose of IVIG administered at the fastest rate from day 3-5. IV fluids and some dex and began to feel better that evening. 10 days later I had a followup with my doctor, counts were back down to 22K. Started 80mg of prednisone per my doc. 2 weeks later my count was 64K. I tapered to 60mg for 4 days. Counts dropped to 47K.  This past Thursday my counts were 16K. It appears the prednisone isn't workin anymore which may be a blessing in disguise. I don't want to be on it anymore.  Told my doctor I wanted to try a TPO and suggested NPlate but I found out it isn't covered by my insurance but Promacta is so that's my next step.  I think my counts have dropped further since Thursday as just earlier today I noticed a single blood spot on the inside of my cheek. I am always looking for them now. I don't want to go back to the ER/hospital again just to repeat the same protocol that was only a temporary fix. I'd rather wait for the Promacta prescription and start down that road as soon as possible.   My target count is 50K although at this point I'd be happy with 20K I think. I am asymptomatic when counts are > 10K from what I've experienced.  I'm concerned about side effects from Promacta but I hope to start on as low a dose as possible then ramp up if needed to get to 50K.

Best wishes
Derek

Derek. 
I have taken Promacta, it took a while to kick in…others on here have said the same

mrsb04,

Thanks for your reply.  Did Promacta achieve your minimum desired platelet count? Were the side effects, if any, tolerable?  Also, are you currently taking any meds or managing without? 

Derek

Derek
The first time I took Promacta it lasted about 4 years before I lost response to it. By which time I had developed an iron deficiency which according to the pharmacist was caused by Promacta. The second time I gave up after 6 months as it didn't really work and upset my digestive system.

It is a pain of a med for someone who needs a high calcium diet for osteoporosis.

At the moment I am on Pred 10mg a day,  having just failed the PRN 1008 trial with a count in single figures.
I am hoping to start Avatrombopag in the near future. 

mrsb04,
Thanks for the info regarding Promacta.  Was the osteoporosis preexisting or a result of steroids?  I know Promacta has a chelating effect so taking D3/Calcium supplementation would be challenging. From what I read, no food with calcium 2 hours before or 4 hours after taking the med.  I'm sorry the PRN1008 (Rilzabrutinib?) trail didn't work.  You've tried therapies that address both sides of the ITP platelet life cycle - production and destruction and it seems the production meds (Promacta, Nplate) worked for awhile but then lost efficacy while the destruction blocker (PRN1008) had no effect.  Does the 10mg of prednisone raise your counts above single digits?  I appreciate you sharing your ITP experience, It's has very informative and helpful.

P.S.  Beautiful grey tabby.  We have one, also. Wonderful cat.

Derek
Yes osteoporosis steroid induced. 
Generally 10mg Pred will keep count above 10 but the merest  hint of a virus ie common cold and count will drop. 
He was a wonderful cat thank you. He was 17 when he died. 

Derek- Hope it is going well with Promacta. Most people do very well on Promacta without side effects. When I took it, my platelets rose to 40 in about a week or two. I started on 50mg. After a while, my platelets started climbing up to 100. I then dropped the Promacta dose down to 25mg.  Quite a few people on the forum have been able to taper off of the TPO drugs and achieve remission. Some people have been able to reduce their dose to every other day. It can be quite a good drug. I had some side effects (headache, brain fog) with Promacta but they went quickly away when I stopped taking it. Also its important to know that some initial side effects will go away after a few days or a week.

I have been on Nplate for 5 years and have no had apparent side effects. It keeps my counts around 30 which is a safe count for me. When my dose is increased, my counts go up to 50 for a while but then drift back down to 30. So I just accept that 30 is about as high a count as my immune system will allow.