Do nothing?

Hey guys! I haven't been on in a while, and I have a question to throw out there.

My brief history: 40 years old, healthy chick in all other ways. Diagnosed at 24k a year ago, and began the same journey many others have: prednisone doesn't work, Ivig only temporary, winrho did nothing, rituxan was bunk as well. My bodies natural tendency seems to be around 20-30k.

Not surprisingly, my dr is pushing for a splenectomy. But I feel like it is too soon, and i'm not so hip to the things ive read about splenectomy. I'd like to try to just "let it ride" for a while. I'd still carefully monitor it, but let my body do its thing. The reason I want to try this is because I've never gone lower than 22k, I have no symptoms, and not even heavy periods or purpura. Sometimes when it's in the 20's I'll get a few on my neck - but that's it. Nothing more than a few red dots, then gone.

Of course, my dr is freaking out at the idea of doing nothing. But I can never get him to tell me any really significant issues I could have if I DON'T treat. I feel like I'm always being treated for my ITP as though it were a horrible cancer that needs immediate attention, and honestly - I just don't see it that way. And it doesn't seem like something that can be fixed, so what exactly is the goal? Give me lots of medications that have worse side effects than the actual ITP?

So - what I'd love to know is: how has it gone for any of you who have gone this route - careful monitoring, and nothing else. How low do you let them go before getting assistance? Will I feel different If they drop significantly?

Sandi - it sounds like you've gone this route. How has it worked for you?

Any advice from those of you who have tried to "let it ride" would be greatly appreciated.

Kittie:

I sort of did nothing for a while, but the circumstances changed. I did have a time period where my counts were 20 to 30 for about three months. During that time, I did just monitor. I figured I was just putting off the inevitable by not treating because eventually I dropped below 10 and had to, but I just couldn't stand the thought of steroids. I wanted to put that off as long as I could.

So, I guess you could say I would have let it ride as long as I could. I don't think you are being unreasonable since above 20 to 30 is the acceptable cut off for treatment.

You may or may not feel differently if you drop lower. Hard to say unless it actually happens. Do you have any treatment plans in place just in case? That wouldn't be a bad idea. Maybe Dex or N-Plate if you don't want a splenectomy. Something to discuss with your doctor so you wouldn't be scrambling if you did drop.

I haven't tried dexamethone yet. I'm having a bone marrow biopsy this Friday which can tell us if it's a production or destruction (or both) problem. So after that he could decide better about the n-plate or promacta.

But I guess a question I have is - how low can it really go? Like I know that the hematologist safety zone seems to be right around 25k, but how low can it really go before something happens? And if it does, what exactly happens?

The one time it went down to 22k I did feel "funny" - I just felt odd, like I was light headed and cloudy. Felt like I might be "coming down with something". but I still had no symptoms besides just feeling off. Do some people feel pain?

Have you talked with anyone who had a good experience from papaya leaf? Or is that all made up? I have seen people online speak highly of it, but they are always attached to a sale of products.

Kittie:

A bone marrow biopsy will not tell you if you have a problem with destruction or production.

See this:

www.pdsa.org/forum/6-general-itp-discussion/11698-bone-marrow-biopsy-and-production-answers.html

How low can it go? To zero. I've been at 3. What happened? Well for me, not much more than what happened at 8 or 15. I had some bruising and petechiae and a heavy period. I also felt tired and dizzy. There should be no pain unless there is a brain bleed. That is very rare.

No, I do not know anyone who had experience with papaya. I don't know if it has actually worked for anyone, but if it has, it would be a rare event. I have seen many products whcih have been claimed to be cured. I am a big skeptic.

My experience is I feel fine with low platelets. I lived with them low as 12K-14K for a couple years without treating- I don't recommend it as its risky. Then my counts dropped to 6K and I began treating. Now I try to keep them above 20K with a minimum dosage of Promacta and prednisone. 30K is better but I'm fine with 20K.

If my counts stayed above 20K without treatment I would love it! And I wouldn't treat at all- just my opinion from personal experience. The treatments are risky and can be miserable. But some people have serious bleeding at lower numbers, so you have to get to know your body. Over the past 4 years I've come to trust that I'm okay with lower numbers.

I've never had a bone marrow biopsy. My 3 hemotologists have not felt it was necessary. I quit my first doctor because I felt he was over-treating and not listening to me. ITP is a rather personal journey, everyone is different. best of luck!

Not treating with counts in the 20s sounds to me like a good option. I'd watch and wait for the count to go below 10 or for symptoms, which ever came first. Symptoms to me would mean frank bleeding.. nose bleeds, blood blisters in the mouth, blood in the urine, something like that. Petechiae and bruises are not important.

I was diagnosed with ITP after having a Bone marrow biopsy. This was done to rule out any other possibilities of low Platelets. Bone marrow biopsy/aspiration may be used for many conditions. Blood cell conditions in which too few or too many of certian types of blood cells are produced, such as leukopenia, leukocytosis, "thrombocytosis", (low Platelets) thrombocytosis,(too many platelets) pancytopenia and polycythemia. Platelets are produced in the Bone marrow so why would a bone marrow biopsy/aspiration not indicate what may be causing low Platelets? A biopsy will not tell you why Plaetlets are being destroyed but it can indicate why they are not being produced due to a blood or marrow issue. I had a Bone marrow biopsy to rule out Cancers of the blood/Bone marrow and leukemia. Personally, I feel mine ITP was caused by a virus that compromised my immune system, affecting my Platelets. I am producing Platelets but for some reason my body is destroying them at times. Virus, stress, chemicals, food, who knows exactly what causes ITP. So, there is either a problem with the production of Platelets in the bone marrow or a problem with the destruction of Platelets in the Spleen due to antibodies attached to the Platelets. Our immune system is under a constant battle to keep us healthy.

A bone marrow biopsy is just not considered necessary nowadays as the blood film will show all that's needed to rule out other diseases. If the blood shows a lowering of other blood lines, red or white cells, a biopsy will be done to rule out myelodysplasia (MDS) and aplastic anaemia. If there are way too many white cells or misshapen cells a biopsy will be done to look for leukaemia and other things. But if the only thing wrong is the platelet count and they are the size that would be expected for ITP, then that's enough. Responding well to steroids also confirms the diagnosis.

www.ncbi.nlm.nih.gov/pubmed/10092918

In that piece 'blood smear' equals the 'blood film' that I talked about.

I guess I have not read that. Thanks Ann. My biopsy was 8 years ago.

Hi Kittie,
I have had ITP for 7 & 1/2 years, & apart from initial prednisolone treatment & 1 major nosebleed, have stayed in the 25 - 30 range, with out treatment.
It has been difficult, confusing, concerning, but I was always determined to hang on to my spleen & avoid unnecessary drugs & their side effects if possible.
I get tired very easily, have occasional light headedness, but fortunately no other issues.
Hang in there,
mj

Thanks all - my appointment for the bone marrow biopsy is tomorrow, and I'm thinking I will not get it done after reading all the journal information (thank you for attaching that link - I've bookmarked it). Seems like it isn't a real necessary thing
for me to do.

Tomorrow I am going to talk to my hematologist about my plan, and see if he can bring himself to getting with my plan as well. I have a feeling that we are about to have a break-up, but if he can't allow me to make some of my own decisions and be my own advocate, the. I guess it's time I started seeing other people (!).

Sandi: I agree that I should have a plan of action, and a cut-off number that I'm prepared to act upon if I reach that number. I think the number for me will be 10,000, and the treatment will be IVIG or a short round of high-dose prednisone with a fast taper, if he feels ok with that. Maybe try the dexamethone instead.

Thank you for all the advice - I have to say that just reading your responses to me was enough to make me cry (out of happiness, don't worry). It was incredible to finally feel like someone could relate to what I was saying, understand me, and offer really good advice from experience. It was also wonderful to not be scolded or made to feel like I'm not taking care of the problem. It was just an amazing moment reading the responses. I felt like someone finally GOT it. And to hear from people who have been through this for 7 years and more - that makes it easier, and I know I will get my own rhythm and groove and make it work for me.

I will continue to post and let you know how it's going. Wish me luck!

Went to the Dr today and whoa - numbers were lower than ever - 13k. So the wait and see approach has already failed me.

It is possible that in the future, I may feel fine sitting at 13 or even 10, but since I'm new on the journey I decided to treat at 13. Also my Hema was almost having a heart attack when he saw todays numbers. He really wasnt happy that I refused IVIG, but he seems to be realizing that I'm serious about no spleenectomy. Also - didnt have the bone marrow.

I am instead on a quick round of Dexamethasone - 20 mg a day for 4 days. I am interested in how that will go (20 mg of prednisone made me pretty wacky), but I'm glad its only for 4 days.

Kittie:

13 shouldn't cause a doctor to have a heart attack. I am forever grateful that my hemo stayed calm and projected that on to me. He'd just suggest that I start treatment and send me on my merry way.

Good luck with the Dex and let us know how it goes.

I did almost no treatment for about 45 years. In 80s I need get the bone marrow test and it was producing platelets i took steriods for a few months but side effects of moonface made me stop. Before that my Mom did not agree to a spleenectomy that would have been late 60s probably. I found a great Dr. at Hopkins sometime in early 90s and again did nothing but test once in a blue moon. My Dr now was his student. We had a few discussions she as well is very calming, makes all the difference in the world. My platelets were around 17-21 I cant recall being over 20k on my own ever. I ended up on the study for promacta/eltrobopag in 2008. It shot me up to 425k. That freaked me out more. Since the study nothing. I never thought too much about it really. I went recently to 3k, who knows could gave been 3k for a few years. Had a brain bleed a few weeks ago and in the hospital for 2 nights. On prednisone since and 12, 13, 5. Started promacta 3 days ago, 25mg and still on prednisone of 50mg. I am not with my normal Dr because this happened elsewhere. Will be back at Hopkins to see her soon and we are emailing. I see the Dr down here on Monday looking forward to see if there was any improvement after a few days with promacta. But the doctors and nurses here are totally opposite of the doctors I have had all my life. Saying I have to be above 50 freaking out even when I was at 12. I am guessing not a lot of interaction with chronic itp. Mind you it did scare me a bit with the brain bleed and I certainly don't want it go happen again and will stay with a treatment until I am comfortable. And I cant wait to see my normal physician

Some Dr's would consider 13k to be serious. Mainly due to an internal injury that could caues internal bleeding that is more difficult to detect/control. By no means do I intend to scare anyone with counts this low, but I do not agree with telling people that it is no big deal. I feel one has to be a bit more careful with counts around 10k. Dangerous internal bleeding can occure with counts below 10k! Though Rare, severe Thrombocytopenia can cause bleeding in the brain or intestines, which can be fatal.
Personally Kitty, I feel you should raise the treatment cut-off number!

Well I guess since no doctors have scared me with any counts I have ever had I never did get too upset. But I was about 10 years old when this started so what kind of Dr. would scare a child.

Now I know when I was diagnosed it certainly scared my Mom in the 1960s. From that point on playground time was spent in the library.

My hema dr. has never freaked out either over my low counts! He's the one who set my treatment level to 10 for a while, but now it's 20. Don't see him, but still have orders at the hospital for every two months and if I feel a need, to just go in. But so far, still holding in the normal range since doing the Rituxan in /10. My next blood test is on the 18th of this month.

The main point is that a person start treatment if a count is low. I see that happening here.

I once saw a locum.. a stand-in doctor as my consultant was away that day. He totally freaked at my count of 1. It was horrible to see and I told my consultant when I saw her next that I didn't want to see him again because he was no use to me, and she must have taken note because I never did see him again. My own consultant would want to treat at my count of 1 but would calmly say "well, I think we need to treat this, don't you?" and we'd talk about what to do and she'd write the prescription. Both reactions result in treating but the latter way of doing it is much better for the patient.

Agree Sandi!

Thamks for all the kind words and advice!

As for now, I've finished the 4 day, 20 mg per day of dex. It really wasn't bad (for me, I know everyone is different). Maybe a bit later I will get around to writing up a comparison chart for how each med felt for me, but dex was very do-able. I'm now day two off it, and I feel very foggy - like I'm walking in jelly. But all in all, still better than prednisone.

Friday is the next test to see how it did.

I agree that it's all about figuring out what is the "norm" that I can live with, and what works for me. Since I'm still new to the whole game, I'm still figuring out what that "cut off" may be for me. I begin feeling a little lethargic lower than 20, but honestly, felt no real difference between 20 and 13. maybe 10 is too low for me, or maybe not. I had no bleeding, and honestly I've never had more than about 10-15 purpura. No mouth issues, no nosebleeds.... Not even bad periods.

Side note (dreamworld): Wouldn't it be great if there were a more definitive answer to when you act, and what is "good" and "bad"? I'd almost prefer that rather than having to negotiate with my hematologist. in the meantime, I'm learning how to be my own advocate, which is hard and frustrating, but I'm kind of pushy so I can take it.

I will add though, that he is at a point that he wants me to go to a ITP specialist at Hopkins. I'm in DC so this should be pretty easy, hopefully.... Let me know if you have any particularly awesome specialists you know of in the DC area!

Curley, how was the brain bleed diagnosed? What were your symptoms? I guess what we all want to know is how can one tell if one is having brain bleed?

Horrible headache. I thought it was maybe a sinus infection. My left hand went numb and about 15 minutes later I had difficulty speaking. Only lasted about a minute. Like an idiot I went home and next night hand numb again so went ER. CAT scan showed drops of blood and platelets were 3K. Stayed in hospital 2 nights. On prednisone for 2 weeks until I sorted out the purchase of promacta. On promacta 25mg for 7 days platelets went from 6 to 29 as of yesterday. Last Prednisone 2 days ago (thank heavens!) Scared me for sure!

I had the headache for a week or 2

Update: count at 91k on Friday. Will be interesting to see how long it sticks, but it's always great to hear that sort of number!

Hey! 91k! All right! I pray it holds for you..

Kittie, I did the Decadron, too, and it helped me. I was on 40 for 4 days of the Decadron. Did this in a series of 4 days every two weeks (4 times).

I will have to say that I was inspired by the article in the Platelet News about Barbara Pruitt. She has lived for 50 years with platelets below 10,000. It is an inspiring story. She mentioned that it was the live polio vaccine that took her out of remission after having her spleen out. She doesn't have any active signs of bleeding and she does travel throughout the U.S.

So, it is possible to live with low platelets.

Well, I'm back on the dex!

Numbers today (exactly two weeks after doing the dex) went down to 11k, my lowest yet. We are basically doing the dex again cause, well, why not? It was cheap, fast, got me a result (of short), and I tolerated it well.

I'm entertaining going back to Winrho - ha d a good result on the first go-round, and second was barely a bump. Interested to try it again though, as a. It's not as invasive/toxic, b. I tolerated it really well, c. It's fast, and d. It was cheap.

So far, I've done prednisone, dex, rituxan, Winrho, and ivig. I'm not having my I spleen removed, but I'd love to hear from anyone who has (more info the better). And what else do you know of that I could try next?

Kittie,
When I did the Dex, I did 40mg for 4 days; waited two weeks--then did 40mg for 4 days again (did a total of 4 times spaced out over some time). Did you mention that they gave you 20 mg of dex? If they did, maybe it wasn't strong enough and maybe they didn't give it enough times. Just a thought.

That's true - he did 20 mg of dex. He said it was because I'm thin and small framed - I guess if this go-round doesn't give me more longevity than maybe 40? I'm not really small - 5'9, 140 pounds.

I wonder if I'd have a better result at 40. I am surprised how fast 20 makes my face fatten up. It's pretty weird.