Diagnosed in February, finding my way

I'm 45 years old, and up to now, I've pretty much always had really good health. (Something that I now realize that I totally took for granted). I was diagnosed with ITP on February 16, 2016- I developed a large hip hematoma that I received from a very very minor fall skiing, and then the next day had a nosebleed that lasted several hours. Those two, combined with a bunch of other big bruises convinced me to get into an Instacare clinic to get it checked out. They took a CBC, found that my platelets were at a 2, and sent me to the emergency room where I was admitted to the hospital and given solumedrol for four days. My platelets rose on the solumedrol from 2 to 11 to 23 to 49, and I was sent home with instructions to take 80 mg of prednisone daily and recheck in a week. After a week, I was at 314, and started tapering on the prednisone, going down by half every 4 days. A week later, I was at 300.

Around the middle of March I got another nosebleed and got a CBC to double check my platelets, they were at 214, and I chalked it up to a dry winter and being kind of paranoid.

Then about a week and a half ago, (so, less than a month after the 214 count) I noticed bruising and petichae, and got another CBC. My platelet level was 9. My doctor had me come in and get a "jump dose" of solumedrol, and started me on 80 mg of Prednisone again, with the plan being to decrease by 20 mg every 4 days. Two days later, my level was up to 29, but it fell to 17 two days after that. I was kept on the 80 mg dose of Prednisone, and rechecked two days later, my level was at 20. My doctor had me get 2 days of IVIG infusions, and now I'm at 86, with instructions to recheck in two days, and take 60 mg of Prednisone daily until then.

I'm struggling. The Prednisone makes me emotional, and tired, and edgy, and all of that makes it all the more difficult to navigate this changing road. I worry that this is going to be my life--a never ending cycle of blood checks, mood-altering medications, depression at bad numbers, elation at good platelet numbers, tapering, withdrawal, a month or so of being my old rational semi-energetic self followed by bruising, fear, bad news, depression, and the cycle will start all over again.

Is that a valid fear? Or is that the Prednisone and sleep deprivation talking?

To those of you with more experience than the two months that I have, what hope can you give me? I'm usually of a pretty sunny disposition, and I try to choose optimism over pessimism, but I'll admit, I'm having a pretty rough go of it just now.

Charlotte
Welcome. I was diagnosed last january. I also did the solumedrol/prednisone roller coaster. For most people, steriods are a very temporary solution. There are other options if the symptoms return. I was an emotional disaster on steriods. You can read my journey on this site (my journey, crazy emily) if it is helpful to you. I am 52 and also was completely healthy before this lovely diagnosis. Most people find a treatment that works. Sadly, mostly due to insurance issues (if you are in the US) it can take some time. The most effecive drugs, NPlate and Promacta can be expensive and insurance companies require the doctor first try the cheap, ineffective drugs first. I am now on promacta which helped in 4 days, but it took months to get there and my consistent refusal to have my spleen removed or be admitted to the hospital. I am back to my routine and hoping to run my first race since diagnosis this summer. I ran a 15K in december and got diagnosed in January. Quite the slap in the face.
Learn all you can, ask lots of questions and I am sure you will be fine. Prednisone will convince you that you have lost your mind, but it will come back! Keep us posted and ask anything at any time.
Many warm hugs
Emily

Charlotte

I sympathise with your situation. Prednisolone is absolutely awful. I thought I was going mad when I was on high doses.

It can take a while to find a treatment that works.

Have a look at this it is very helpful. Anne

www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

Most people do not struggle like that for a life time. At first, yes. It can take time to find the right treatment and it takes patience. The best thing to do is read as much as you can and become informed. You can then make suggestions to your doctor. Once you take control, you'll get your life back. Prednisone is the worst, and we've all been there. It didn't last forever.

There are other treatment options. Most of them have side effects, but some are worse than others. You'll get there. The most important thing to know is that you do not have to have normal counts; safe counts (over 30k) are good enough for daily living.

Can I second Sandi's statement that counts over 30 are enough for normal life. There are so many people who waste time and happiness worrying that their count isnt normal. It really doesn't need to be, and the aim of treatment actually shouldn't be to make it normal - just safe.

I like that, Alison....wasting happiness. It's true, and I did waste much happiness fretting and worrying about the next count. It's not worth it. It gets liberating when you realize that your life's happiness really does not have to revolve around a platelet count. That takes a bit of time though.

Thank you Mrsb04, for that PDF! I read through it, focusing where I am in the journey, and it's calmed my fears for the moment. I'm trying to learn what I can, but I've found that If I get too immersed in the information, my imagination can take me down roads where it's not good for me to go. So, your link was a great starting point for me, and as I'm mentally able to handle and understand more information, there are branches from there that I can take.

Sometimes knowing where to begin is the hardest part-so thank you for helping with that.

For the rest of you--THANK YOU as well. What a relief it is to have a community of people who have walked and are walking this road, know how it feels, and can give guidance and support! I honestly can't thank you enough.

I'll get another CBC tomorrow morning, and go from there I guess. Trying not to tie my emotions to one number or another. When I'm rational about it, I realize that I really have very little control over what my platelets do, so there's not a whole lot of sense in getting tied in knots (or "wasting happiness" as you so wisely put it) about it all. Just take the information, and travel the road, trusting that I'll eventually find a workable solution. It will take time, but when I was waiting for a diagnosis originally, the Instacare people led me to believe that I might be looking at leukemia. I'm not a fan of having ITP, but I'll take it over leukemia again and again and again.

Hi Charlotte
I was diagnosed in September at 46 years of age. Also very healthy before all this. As I read your post I got emotional because you sound just like me. I had the same worries and fears (still do sometimes). I get nervous before each blood test. But take the great advice you have gotten here. Once you find the right treatment you will get back to a normal life.
I had rituxan in January which so far has been working to keep my numbers around 150. It has been a rollercoaster, but like you, the thought of having leukemia or lymphoma really was concerning and I am grateful that I know what I am dealing with.
Hang in there and keep us posted. I will be praying for you.
Joanne

Not wasting happiness on counts good or bad.......I eventually learnt this lesson from Dougie who really doesn't waste any emotion at all on his count. You are right though, it takes time!

Platelets are at 272 today.

My doctor is thrilled, and has given me permission to taper down my Prednisone. I'm to recheck labs in one week.

I'm grateful for the news. I'm trying not to get too excited, because as I learned this last go around, fixing this once doesn't mean it's fixed forever, and it's a big fall mentally and emotionally if I let myself think that we're all done and it's smooth sailing from here on out. Also, I've read (here at pdsa) that the IVIG that I got last week tends to raise platelets in a hurry (as was the case with me), but the increase tends to be temporary--one or two weeks, generally--right?

So I'm guessing that we don't actually know at this point if my body has relearned what it's supposed to be doing, and isn't just responding to this super-substance.

So maybe it's not as fabulous of news as it could be, but I've learned something that feels pretty valuable to me, in that I know that my body responds remarkably well to IVIG. So, should we find ourselves here again, in a pinch, we know this seems to work. That tells me that it's unlikely that I'm going to have to live my life in a bubble, forever shunning knives and scissors, and my 7-year old's flying elbows and knees. That is no small thing, and I'm not blind to the fact that it only took twelve days to make this discovery. In the world of weird diseases, that feels like about a minute.

So, my wise new friends who have traveled this road, what advice can you give me now? Just take it day by day? Enjoy the tapering, and trust that whatever happens in the future, it will all work out eventually?

I can't thank you enough for your help. Really, I'm just so grateful to have you here.

Hi Charlotte,

You are right to be hopeful, and especially to be thankful to know you have a good option for rescue treatment if your platelets plummet.

Now for the big BUT: I would be thinking ahead to what happens the next time if your platelets plummet? Your hematologist will be pushing for the next "second line" treatment, and you will need to be prepared to respond with your own preferences, and your own questions. Very often, the hematologist will push for a splenectomy (and some can push harder than a used car salesman!). If you are like many on this website, you won't want to have anything to do with that option. It really helps to know what you want ahead of time, so that you can advocate for yourself. For most hematologists, ITP is a very tiny part of what they do. Collectively, there is more ITP knowledge, insight and wisdom on this website than most hematologists have time for. It is important to take charge of your own treatment, and that requires you to be prepared.

So, enjoy the tapering and trust that whatever happens in the future, it will all work out eventually.
And, do your homework.

It really helps to know what you want ahead of time, so that you can advocate for yourself. For most hematologists, ITP is a very tiny part of what they do. Collectively, there is more ITP knowledge, insight and wisdom on this website than most hematologists have time for. It is important to take charge of your own treatment, and that requires you to be prepared.

Thank you Rob. I will take this time to do some homework, study up on options, and form some preferences and opinions so that if (when) I find myself on the road again, I'll have the benefit of informed decisions that aren't motivated by fear or fatigue or Prednisone. You make a good point about hematologists. All the ones in my area are also oncologists, so ITP really is just a sliver of their practice.

Got another CBC today, platelets are at 254.

I took my last Prednisone (for this go around at least) yesterday, and though I don't feel completely back to my old self, there is no question that I'm feeling much better than was the case a week ago. As my Prednisone dose has gone down, my emotional state has improved, and so I've been doing more ITP research, and learning about the ins and outs of my health insurance, now that I can do both without flying into a panic of runaway imaginings. It's been really helpful and as Sandi told me that it would, has helped me gain more control of my situation, which has made a huge difference for me.

I so appreciate all of you who virtually "held my hand" and encouraged me and counseled me back a week or two ago when I was having such a hard time. Thank you.

So, we'll see how things go I guess. Maybe I'll have a nice long ITP-free period now, or maybe I won't and I'll be back to treating it again sooner rather than later. Only time will tell, but I'm more prepared now for whatever comes, and I'll keep doing my homework, and I'll keep enjoying the health that I have when I have it.

Onward and upward.

I'm glad that things are going better for you.

Well, I thought it might be too good to last . . .

I noticed a new bruise today, and went in for a CBC. Platelets are at 64. So, between 10 days ago and now, I've dropped by 190. My doctor doesn't want to treat yet (and neither do I), but he wants me to recheck on Monday and go from there.

I'm thinking that, based on how quickly I went from 254 to 64, and the fact that what got me to the 254 in the first place was the IVIG (which is known for being a temporary fix), it's likely that I'll be back into "treating mode" within a week or two.

So, with that in mind, I have a few questions, and if any of you are able to give me the answers, or give me some guidance as to where I might find those answers on my own, I would be so appreciative.


Question #1: I know that there are treatments that are not effective on patients once they've had a splenectomy. Which treatments are those? I have no intention of even considering a splenectomy until August at the absolute soonest (I want to make sure I'm at least 6 months in before we even put that on the table), but I don't know my doctor well enough yet to know if he's going to push for that or not, and I'd like to be armed with information in the event that we start having a conversation along those lines sooner rather than later.

Question #2: What about Rituxin? Is this something that is administered IV-style, or orally, or what? Is it a one and done dose, or something ongoing? What are the side effects? How effective is it, generally?

Question #3: I've been reading up on TPO's, specifically Promacta and NPlate. My insurance doesn't cover NPlate, so I'm not all that interested in that avenue, but it does cover about 70-80% of Promacta, which would put me paying $600-700 for each 30 day dose. Kind of daunting, until I remember that my out of pocket maximum is $5,000, and what with my hospital stay in February and the IVIG last month, I'm getting pretty close to that now, so pretty soon I'll be covered for the rest of 2016, at any rate.

So anyway, getting off that tangent and on to my question--Promacta is an oral pill, and it seems like you have to go off dairy if you take it? Is that right? Are there any other restrictions? What about side effects? How effective is it, generally?

Question #4: Are there other promising treatments that I haven't mentioned here that I should be researching?

Question #5: Does there tend to be a "hierarchy" of treatments that most hematologists follow, or is it kind of hit or miss? In other words--I know that the standard first line treatment is Prednisone and/or IVIG or AntiD. Once you get to the second line treatments, is there an established order that hemos follow there, or does one hemo try one thing first and another try another thing first, and you just kind of try things in a semi-random order until you find what works for your particular body?

Again, I so appreciate any help that any of you can give me. I'm not opposed to doing my own research, and I hope this request doesn't come off like I'm too lazy to do that. The problem that I'm running into is that I'm having a hard time discerning what is good information and what is bad information. Also, sometimes I'll look through these forums, and I'll get caught up in this story or that story of the different journeys that people here are experiencing. Sometimes they are inspiring and helpful stories, and sometimes they are discouraging and scary stories. Where I'm so early in my own journey, I'm trying to avoid dwelling on the scary stories, because they get into my head and turn my thoughts to worry and fear.

So anyway, those are some of the questions I have. Again, I thank you for giving me so much help and support so far. This all became immeasurably easier and less frightening, once I discovered this site. That is worth the world to me. THANK YOU.

Question #1: I know that there are treatments that are not effective on patients once they've had a splenectomy. Which treatments are those? Win-Rho is the only one that cannot be used after splenectomy, but it's unlikely you'd use that anyway. However, some of the treatments are more risky after splenectomy. Immunosuppressants are riskier due to increased risk of infection. TPO's (N-Plate and Promacta) are riskier due to an increased risk of blood clots. Sorry for the overuse of the word 'risk'. It's late and I can't think anymore.

Question #2: What about Rituxin? Rituxan is an IV, given once a week for four weeks. Each infusion takes between 4 to 6 hours average. The success rate according to me is between 50% to 60%. Remissions can last a year on average if a patient is responsive. Most do not experience side effects and if they do, it occurs during the drip and can be controlled quickly. There are some very serious rare side effects that should always be taken into consideration.

Promacta. I'm not the expert on this, but I don't think you have to stop eating dairy, you just can't eat it within 4 hours of taking the pill. It's fairly successful, probably about 80% success rate, and few side effects are reported. Most of the time it is used as a last resort and many people wish they had just tried it in the beginning since it seems to be a good option. The dose should be adjusted to keep counts around 50k. There is a risk of blood clots with this drug.

Question #4: Are there other promising treatments that I haven't mentioned here that I should be researching? If 'promising' is the key word here, I'd say no.

Question #5: Does there tend to be a "hierarchy" of treatments that most hematologists follow, or is it kind of hit or miss? There is not a 'written in stone' order of treatments. It is all based on the experience of the doctor and the wishes of the patient. It's all trial and error because everyone responds differently.

There is no right or wrong when it comes to ITP. You have to balance the benefit vs risk. Some choose treatments based on cost, some on lifestyle, some on fear of side effects. If you think that you have a higher risk of infection it's good to stay away from a treatment that could cause infection, etc.

Platelets today are at 68, so essentially the same as last Thursday (64). Considering the fact that I dropped 190 platelets in 10 days, this is an unexpected (but very welcome) development. Being able to stay off the Prednisone train is definitely a treat, no matter how long it lasts!

I'm supposed to recheck in a week, sooner if I notice new bruises or other symptoms. Also, my GP (who has been helping me manage this since it all started) is referring me to a hematologist. I'm almost certain that this would have happened sooner, but where I live (a smallish area of around 110K people) there's only one hematologist/oncologist, and he's closing his practice within the next month or two.

I figured I'd eventually need to see a hemo if my condition didn't resolve, but up to now, my GP's actions were lining up with what my research was saying should be done. As importantly, I trust him and like him, he knows me well, has made himself completely available to me (even giving me his cell number so I can text him for results on my CBCs) and I don't have to go to another city to see him. So I felt good about the way things were going. Having said that, I agree that it's time for me to see someone with more specialized training and knowledge. I'll have to go to another medical center about 90 minutes from where I live, and my GP's nurse is going to set that all up and get back with me.

I'm a little apprehensive about the change in doctors--just concerned because I know nothing about the different hemo's in this area of my state (or any hemos anywhere, to be honest). I'm confident that it's the right call, but I worry that I'll end up with a doctor with whom I don't "jive", and that it will be more difficult to manage this long-distance.

But, what are you gonna do? Just take it step by step, hope for the best, and see what happens I guess. I'm realizing that every time I encounter a bump on this road, I get a little better at managing it, which is encouraging, and helps me remain hopeful that I'll find a way to get all this normalized at some point. Regardless, I know my situation could be so much worse, and I'm thankful that it isn't.

Charlotte - you never know what platelets are going to do, and you're finding that out now. It's easy to get discouraged when a drop happens, but as you can see, sometimes they don't continue down quickly. Take each week as it comes and you will be fine. You can do this.

It does take time to find the right Hemo and I understand that your choices are limited. Sometimes though, it's just a matter of breaking them in and getting them to see that you are knowledgeable and want to work as a team. That can take time so even if you don't like him at first, you might after a while.

Platelets are at 42 today. Considering some of my symptoms (new bruises, some petichiae), not as low as I was expecting. I'm glad to be above the magic "30" number, and thrilled to be so far above 10.

Still waiting to hear from my doctor about this result. I have my first appointment with my new hematologist tomorrow afternoon, my guess is that my GP will tell me to wait until then and see what the specialist says.

So, still on the roller coaster for sure, but this dip wasn't as bad as I feared it might be. The last time I had petichiae, my number was 9.

Charlotte - How is your taper going? Have you been tapering the whole time, from four weeks ago?

No, I've been completely off of Prednisone for a few weeks now. I ended up being on 80 mg for about a week, and then when the IVIG bumped my platelets up to the 200s, my doctor had me taper, going down to 60 for three days, then 40 for three days, then 20 for three days. Then he said I could go completely off, but I did 10 for a day, and 5 for two days, just because I was a little concerned about having tough withdrawal symptoms.

I did have mild headaches and some brain fog for about a week after I stopped taking the Prednisone completely, but the headache was easily treated with Tylenol, and the brain fog was nothing like I experienced while on the steroids, so it wasn't hard to endure a few more days of that. I've felt like my normal self since the first part of May.

With a count of 42, without any treatment for a few weeks, you are doing well. I hope your new specialist will not be too eager to overtreat, and that you will be discussing options in case treatment is needed in the future.

That is my hope as well. I've never met this man, so I feel I'll need to gauge what I say and do against how easily we are able to understand one another, but I'm hopeful that we'll be able to come up with a plan or two as to what the next steps might be, should my platelets drop below 30 or so.

At this point, this is how I'd like to manage it:

When platelets are between 30 and 50, I'd like to monitor it closely (CBCs at least weekly) until I get a feel for what my body does and what I can expect (if that's even possible--maybe my body is going to be sporadic for awhile--or forever?)

When platelets are between 10 and 30, I'd like to treat, so I can hopefully head off the hospitalization and knee-jerk emergency treatment that tend to be the case at numbers below 5.

I don't want to even discuss an splenectomy until mid-August, which will be six months after my initial diagnosis. Honestly, I'd just as soon not discuss a spenectomy ever, but if my hemo is pro-splenectomy, I'm planning to hold him off until the 6 month mark, and use that time to research and prepare a compelling case against it. (Or perhaps my research will convince me that it's the right course for me--who knows? The point is, I don't want to remove any organs unless I feel like doing so is the right course for me.)

Met with the hematologist yesterday. I really like him. He has a great bedside manner, and seems to really knows his blood diseases. I was concerned that because he is also an oncologist (as is the case with all the hematologists on my insurance panel), that he'd be primarily a cancer doctor that dabbled in blood on the side--but that doesn't seem to be the case at all.

He went over the different things that cause Thrombocytopenia in general, and what might have caused my ITP (I had an infection in December), and laid out treatment options, going over all the things I've been reading about for the past two months, first line treatments, second line treatments, etc. He mentioned splenectomy as something that was a possibility, but in the same breath he made it clear that though it can have a good success rate in the short term, it comes with possible issues later on. All this without me even having to mention my feelings on the subject. He also (without me getting around to mentioning my feelings on the subject) went over the old "we don't need to maintain normal levels, just safe levels" philosophy, and essentially said that as long as I was over 30, he'd rather not get too excited about treating. I feel great about that philosophy, and I feel like we're on the same page in most and possibly all respects pertaining to where we go from here.

That said, my platelets had dropped down to 35 yesterday, and we both agreed that since they seemed to be going nowhere but steadily down, and since his office is an hour's drive from my home, we'd be better served to start treatment now, rather than wait another day or week or whatever it takes me to lose those last 5000 platelets and treat then.

He's not convinced that we need to move on to second line treatments quite yet, reasoning that because my Prednisone taper in both cases had been really quite fast (two weeks from incidence of taking the meds to being completely off the meds), we really haven't given corticosteroids a fair chance to do their job yet, and it is probably too soon to say definitively that I am refractory to them.

So, he gave me the option of going back on Prednisone for 6-8 weeks, or trying large doses of Dexamethazone for four days, with the possibility of doing another 4 day treatment in a few weeks if this one doesn't do the trick. I felt better about the Dexamethazone, and he did as well, so I started on that course today.

I'm to recheck platelets in a week, and again every week until we are confident that we have a handle on this, and I will see him in a month, sooner if platelet levels dictate otherwise.

I'm about 6 hours into my first dexamethazone dose, and I'm feeling the usual steroid symptoms--headache, fatigue, and brain fog, and a new one--indigestion, but none of these are unbearably difficult or frustrating to me at this point. We'll see, I imagine they will get worse as I continue with treatment over the next three days, but as they say, "Sometimes the only way out is through".

All in all, I'm feeling really good about where this is all going. I have a new level of confidence that sooner or later, we're going to figure this all out, and this roller coaster ride will stop being quite so changeable, and start being a little more tame and maybe even boring from time to time. We'll see how it all pans out, but I'm encouraged. Now, if I can just remember to come back and read this on Friday or Saturday when (if?) I end up in a steroid-fueled haze of despair!!

Charlotte:

He sounds like a great Hemo! I love everything he had to say. Well worth the hour drive.

Dex is a good option, but let me warn you. The side effects increase daily and by the fourth day, can be pretty bad. When you stop the drug, there can be horrible withdrawal that can last days. Some people cannot tolerate the drug at all. It could be easier for you since everyone is different, and I hope that is the case. Also, counts sometimes shoot up during the treatment, but drop back down quickly. Not all the time, but a good bit of the time. The protocol to achieve remission for Dex is to do the four day treatment once a month for six months, but people rarely do that. I don't know if it works for remission or not because I've never seen it.

The good thing about Dex is that you get the side effects over with in about a week and a half, instead of the months and months of Prednisone. For that reason, it could be worth a shot. I wish you luck and hope it goes well for you.

Charlotte, It sounds like you've got a great hematologist and a great, positive attitude!

Different people react differently to the high-dose dexamethasone, and for some it's just really annoying! Imagine the best, prepare for the worst, and keep your chin up.

Charlotte. you mentioned indigestion. Are you getting some cover for that, for example Ranitidine?

Yes, thanks for asking!

My doctor told me to take Prilosec or Nexium. I didn't ask about Rantadine, but he told me to avoid Tagamet, that it can mess with platelet levels and so makes it hard to tell how well the the Dex is working.

I have some Prilosec, but so far the indigestion hasn't been bad enough that I've felt the need to take it.

I did have a harder than usual time falling asleep last night, it was a bit worse than when I was on Prednisone even. But, I took some Unisom, and when that didn't do the trick, I loaded up some kind of "music for sleep with deep delta waves" (whatever those are) on my tablet, and I was able to fall asleep within about two hours after my usual time, and was able to sleep through the night after that. The management at my job have been really understanding about all of this, and so I was able to sleep in for an hour, and so far I'm doing all right today.

I took my last Dex on Saturday, and platelets are at 317 today. So, sounds like the med did its job. I'm exhausted, but glad for some good news.

I'm not sure what I think about Dex vs. Prednisone for me. I think I'm a little too close to the situation right now to be at all objective. I will say that actually being on the Dex wasn't nearly as hard as being on Prednisone. However, Dex withdrawal has been much harder than Prednisone withdrawal. So, I guess it's a trade-off.

I might have more to say or ask in a couple of days or so, but at the moment, I'm kind of running on reserves, only doing what absolutely has to be done, and trusting that the rest will either take care of itself or wait until I have more of my regular energy.

Anyway, I'm glad it worked for now. We'll see what the future holds I guess.

Charlotte -

Usually dexamethasone treatment is harder but the withdrawal is easier, compared to prednisone, because the dosage is higher but you have less time to become dependent on it. It's funny how everyone reacts differently.

That's a nice response to the high-dose dexamethasone (HDD). Knowing you respond quickly means that you can learn to be comfortable at somewhat lower platelet levels. "Watchful waiting" may be a good option for you: only treating when symptoms become apparent (which has only happened once for you).
( See alisonp's explanation here: pdsa.org/forum-sp-534/13-general-discussion-for-parents/29152-watch-and-wait-what-does-it-mean.html#54301 )

For example, my wife had Rituxan in August 2014 and her platelets bounced around a lot afterward, including 17k in September and 19k in October 2014. In July 2015 they again dropped to 22k. Each time she waited, and each time the count bounced back up without treatment. Her platelets have stabilized in the 50's and are now in the 60's without any further treatment.

This is the most important thing we have learned from this forum: all treatments are risky and have negative side effects; treatments are often more risky than the low platelet levels they treat; low platelets don't have to be scary, especially if you have a good rescue plan in place; and platelet counts don't have to be normal... just safe.