My version of the how low is too low question

Hi, this is my first post on the forum. I'm a 29 yr old that was diagnosed in September. The crazy thing was, I've only been to a Dr. once in the past ten or so years. In late August I decided to just have a routine physical because I wanted to start losing some weight under a Dr's supervision. As part of the checkup, he did a blood test and discovered my levels were at like 15. Since then I have been seeing a hematologist who has had me do several dexamethasone pulses. After the pulse my levels go up around 100 and two weeks later they are back down around 10. I think each time my levels have dropped a bit lower - last time I was at 5. So now the doc has given me the choice of what he sees as my options for treatment - splenectomy, nplate, prednisone, rituximab, or more dexamethasone pulses. From reading the treatments on the PDSA website, I guess there are a few others that he did not mention. He thinks the best option to try next is the rituximab. Really, none of the options sound that great to me. Which brings me to my question. What really are the dangers of not treating at a very low level? I know Drs. consider under 50 to be really low, and some people are comfortable not treating as low as 30. Why is 5 or 10 so much more dangerous? Would it take a car accident to become very dangerous to me, or could something happen while I'm just sitting peacefully at my desk job? I have pretty much had no symptoms at all, no bleeding, no petichiae, no bruises, even when I am below 10. So has anyone ever elected not to treat with traditional drugs when they were as low as this? I'm not against treating. I just feel like I need more time to sort things out before jumping into the next treatment. And I would prefer to work on finding the root cause and find natural treatment options than to go through unpleasant treatments that only have a 40% chance of working. Am I too at too low of levels to try natural treatments before resorting to drugs or surgery? I know no one can really answer that other than me and my doctors, but maybe someone has a thought or two to share.

Thanks for listening to my long spiel.

Mark

Many times ive heard from this site is the saying, "Treat the symptoms, not the count." Meaning, what is more important is the symptoms of active bleeding rather the no of platelets the lab results show you. Active bleeding consists of bleeding gums, nose, blood in urine or in feces, etc.

Hi Mark,
I've not tried dexamethasone pulses, but sounds like they're just making your count yo-yo all over the place!

If your haem tries to lead you down the splenectomy route this soon - WALK AWAY AND FIND ANOTHER ONE. Splenectomy should be a last resort when everything else has failed, because some of the treatments you cannot have after you've had your spleen out, and it'd be daft not to try those first.

I was on prednisolone for 5 months and it was unpleasant (and not condusive to weight loss I'm afraid!), but by the sounds of some of the other treatments, the best of a bad bunch.

my haem has agreed that we won't treat me unless I drop below 20 or in the event of an emergency. When I dropped down to 25 just over a year ago I was going in for counts every 2 weeks until i naturally started to go back up. I try to keep my protein quite high (as you need protein for your bone marrow to make megakarocytes which then break down into platelets, and my theory is that if i have more to start with then my count might not go so low - but this is only a theory and might not work for everyone) and I steer clear of alcohol.

below a count of 10, whilst extremely rare, there is a risk of spontaneous brain haemmoarhage, but it is very very rare. at any low count, a car accident isn't going to do you any good!

Mark:

The good thing is that you do have choices. They are not easy ones, but they are choices nonetheless.

My advice for what it's worth: I don't think it's wise to sit at counts under 10 without treating since you do have untried options available. Some people go that route after trying several things that don't work, but you don't have to live with low counts at this point. It's worth it to try another treatment or two. Although the risk of death is low, spontaneous bleeding does occur. Many people do fine at low counts for long periods of time, but why take the risk if you don't have to?

I'd disagree that doctors consider counts under 50 "very low". Without symptoms, counts above 30 are pretty safe, 50 is even better. I'd live with counts of 50 and not treat. A doctor who thinks counts under 50 are very low may not know much about ITP. Most of us run into that with ER doctors.

Alternative treatments - controversial. I'm not a believer and that's all I'm going to say.

If you need time to sort things out before making a decision, you can do that. There's no reason to rush into anything. Of course, if counts get too low in the interim, you can elect to do what you've been doing or just monitor and keep an eye on things.

Of the choices you've been given, I'd say Rituxan is your best shot at remission. Most people have no side effects and do well with it. Some have had very long remissions.

Good luck with your decision and if you have any more questions, ask away!

Mark,

Since no on else is chiming in on the natural - I will. Since the MD's job is to push drugs, that is what they're going to push you towards. But since you mentioned natural, I'll share our experience.

Low is relative to the symptoms you have at any given number. My son sat at zero for well over a month with no bleeding issues. We did LOTS of natural stuff to support his body during that time (keeping his cell structure strong so the cells would be less likely to bleed). We juiced 4-6 times a day, did bones broths, etc. That was all for when he was sitting at zero.

After much frustration with doctors and their drugs, attitudes, etc. we walked away from all medical. We contacted a women from this board whose daughter had had ITP and she was also a homeopath. She treated our son and within six weeks his counts were normal. They are fluctuating a little bit as we're working on healing his food allergies now, but nothing major. There are a number of people that have been on this forum that have used her to treat them and have been extremely successful. It was the best thing we ever did. So much so, we started treating the rest of our family for other health issues we wanted to see go away. So I would highly encourage you to look into the natural. We used naturopathy for health issues for two years (not for ITP). While it supported the body, it didn't little to heal it. I've done traditional chinese medicine, naturopathy, acupuncture, etc. and THE thing I have found that actually leads to healing (for any health issue) has been the homeopathy.

Best wishes and I echo the person who said to get another hemo if they're talking splenectomy. That's just crazy.

All the best,

patti

I've used large doses of Dex over the years now and then as a 'quick fix' when the count drops below 10k, but never for longer than a couple of weeks. There are many far less nasty treatments for the long term. I'd ask what other treatments are available for you (short of spleen removal). ITP is tricky, it's different for everyone and is basically difficult to treat because of this. Which is why treatment seems like a lot of trial and error.

As for natural treatment discussion? There is an entire forum here dedicated to it. Anyone can go there and read and/or write all about it to their heart's contentment. It is the fourth forum down the list;
Natural Treatment Methods
Discuss alternative methods and treatments here

I'm sincerely glad that my Doc and Hematologist do not believe their 'job is to push drugs'.
My wife manages a medical facility for The Ohio State University Hospital system...consequently, we have a lot of doctor friends. I personally do not know a single doctor who believes such a statement.
.

Everyone is different -- some people bleed at particular counts, others don't. So, I cannot tell you what you should do, and you are new enough to all of this fun that you can't really be sure either. Low counts can be dangerous and are not something to take lightly. That said, I believe the following to be true, at least in my case:

* many ITP'ers live just fine at counts below levels that would freak out your average ER doctor.

* For me, counts above 50 are very safe, and I have rarely been above 50 at any point in my 40+ year ITP career.

* For me, counts below 10 are dangerous. I have had three head bleeds (which, thankfully, are very rare among ITP'ers, even ITP'ers with very low counts), all when my counts were in the single digits. That said, I have had counts below 10 lots of times, and in only 3 of those cases did I bleed in my head. Why those three and not the others? I don't know. Thus, even for me, head bleeds below 10 are somewhat rare.

* My magic number is 20. Above 20, I don't really worry about ITP. Between 10 and 20, I think about it. Ten or below, I go in the hospital.

Over time, you will figure out what works for you, but I would encourage you to take single digit counts seriously. There are lots of treatments you can try before you think about a splenectomy (which is itself just another treatment, with its own set of pro's and con's, including that it doesn't always work). Rituxan is a pretty common second choice, after steroids, but Rituxan is major league stuff and not something you should take without reading the fine print and having a chat with your doctor. For your second treatment, I would also consider Win Rho and maybe Promacta.

Thanks everyone for your replies. All of your replies have been helpful. I have (sort of) decided to go ahead with the Rituxan treatment. I am scheduled for the first treatment this Wednesday. My most recent counts were in the high twenties two weeks out from Dexamethasone, which is higher than usual. Yeah! If I'm still in the twenties on Wednesday, I may try to put off the Rituxan treatment.

I did a bit more reading after my original post and read about some of the dangers of very low counts, such as brain hemorrhage and retinal hemorrhage causing eye sight loss. So now I'm thinking I don't want to mess around with counts as low as 5 without treatement. Above 20 I'm OK with though, considering I have had no bleeding.

Anyway, thanks again to all who offered their advice!

Mark

Mark - keep in mind that Rituxan can take 4 to 12 weeks to begin to work. Waiting until you are lower than 20 might leave you stuck with rescue treatments in the interim.

FYI: I started Rituxan when @ 14 and only had minor count improvement - UNTIL week 9! I given up hope for significant improvement after bouncing between 10-50 and counts didn't climb until I developed pneumonia and was hospitalized (go figure!). During week 9-10 I jumped to 83-262.

So there is hope and be patient re Rituxan

Hi Mark,

I'm glad you have found this site. I was just diagnosed over the summer and it has been terrific to find that there are others out there with this lovely condition.

I have just finished my 4th week of Rituxan. I'm happy to report that I have had no side effects so far and the whole thing went very smoothly. I did start taking a low dose of prednisone after the third treatment, when my counts were below 10,000, but my counts bounced back up last week. I am praying that they will continue to rise or at least stay over 30,000.

I spoke with several doctor friends about Rituxan before deciding to undergo the treatment and they were universally encouraging. I gather that people with rheumatoid arthritis or other conditions may have many, many treatments with Rituxan over the years, whereas for ITP is is a limited number at a lower dose.

Lots of people on this site have written about their experience taking Rituxan, including some with side effects -- I am sure you are checking those out as well; this is just my 2 cents.

Good luck with your doctor and your counts this week!

Sarah

So here is an update on my situation: I was scheduled to start Rituximab on Nov. 17. All week I was going back and forth about whether I wanted to go through with it. On the day of the treatment my CBC showed a platelet count of 23, so after three and a half weeks out from the Dex pulse, it was still holding at a higher count than we had seen since September. When I saw that I was really doubting whether I wanted to go through with Rituximab. To my great relief, the first thing the Doc said when he walked in the room was that he was glad to see my counts up and maybe we can cancel the Rituximab. So we decided to try another Dex pulse. He said I could start then or wait a week to see what would happen. So I waited a week and on Nov. 24, with no treatment, my count was up to 33! So I decided to not take the Dex at all and see what would happen. On Dec. 1 my count was up to 43 and one week later it dropped a bit to 38. Then yesterday, I was very happy that my CBC showed a count of 50!

One difficult thing that I'm sure all of us are experiencing with ITP is the guesswork that goes into treatment. I have no idea what is causing the rise in my platelet counts, though I am very glad for it. I have done many things since early November, any of which could have partially affected the increase. I quit drinking coffee and have not started back up. I've been taking more vitamins, particularly the ones that are supposed to help the immune system. I went on a gluten free/dairy free diet for about two weeks in mid-November, though it is no coincidence that the diet died off on Thanksgiving day. Also, my count seems like it may be higher on days that I have had more sleep the night before. Or it could be that the Dex had a delayed effect.

Who knows why counts go up and down. My suggestion, though, is to not jump into treatment too quickly. If it comes down to drugs as the only way to keep us well, so be it. However, I think that it is good to explore the options, research, and try out less agressive options first.

Cheers,

Mark

Mark:

I'm glad that watching and waiting is working out for you. You're very calm about it which helps. Great attitude, man!