Opinions please!

I'm hoping to start a discussion and I hope everyone will join in. The question is:

Do you think it's necessary to treat to prevent a platelet crash? All opinions are welcome.

My opinion on this has changed over the years, as I've gotten to know "my" ITP. Everyone has their own experience.

When I was first diagnosed, and was on a slow pred taper, my count would bounce between 40 and 90. There was no discussion of treating to prevent a drop....we were just watching and hoping for stabilization.

5 days after I ended the pred taper, my count dropped from 41K to 17K, and we started WinRho. WinRho regular dose brought my count up to ~200K, and not down to ~40K for about 6 weeks. The higher dose of WinRho typically got me up around 400K, with 9-12 weeks before I saw 40K.

Then one day I was sick, and my count dropped rapidly from 59K to 3K. In my mind after that experience, since I'd never had a count in the 30s or 20s, my own "rule" was to watch my counts and request treatment when my count approached 40k. Also, knowing how quickly it could drop, if I would be traveling for a week or more I scheduled WinRho even if my count was in the 50s or 60s.

I don't do that anymore. I don't even care what my count is. Every 3 months or so I get it checked and it's usually between 40-50K. Long story, but I guess I used to treat to prevent a quick drop, I no longer think it's worth worrying about.

If I were a newer patient, I would struggle between wanting to keep the platelet count as high as possible for my peace of mind, and wanting to know what my body would do on its own that might allow me to live a more normal life without treatments.

I think tamar has a point in that we all need the experience of knowing our own itp.

My count has been as low as one, hovering in the teens or twenties and now hovering at 40ish. I know that I don't have any symptoms above 20k really. I also know that my other clotting factors and the platelets that I do have are pretty damn good. Even when I've fallen over or cut my finger with a knife I can't recall ever having prolonged bleeding.

Thanks to this forum I feel comfortable with the idea that some of the treatments are worse than the disease. I'll continue having regular blood tests & extra ones if I see symptoms - but I don't plan on treating unless my counts plummet below 20. (Eta: and even then I'd wait a few days to see if they naturally bounce back!)

Do you think it's necessary to treat to prevent a platelet crash?

The way that question is worded makes it tricky to answer. I don't mind being in the 9k-16k range that I am now. Wish I could achieve that without treatment. But without treatment, I drop to sub-4k within a couple of days and that isn't good.
So I guess my own answer to the question would be, "Yes, it's necessary to treat". Be nice if life wasn't that way.....
And if a frog had wings, he wouldn't bump his little green butt when he hopped.........if wishes were horses........etc....



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I think tamar has a point in that we all need the experience of knowing our own itp.

The thing is can one really know their own ITP? Do we really know what our little platelets will do? Tetanus booster in 1992 and no problems with my platelets - so yeah, 10 years later when I take a rusty wire to the hand I can have a tetanus booster since the previous one didn't mess with platelets. Well this time it did - crashed royally.

Do you think it's necessary to treat to prevent a platelet crash? All opinions are welcome

I can't imagine why someone would want to take meds that can mess with ones body for no reason - and if count is good then there is no reason to treat. That would be like taking antibiotics to prevent a sinus infection even though I do not have a sinus infection but am prone to getting sinus infections so might as well take antibiotics to try to prevent getting one.

And I have a question:
Can one really prevent a platelet crash?

No, unless you have prior experience telling you that a low count is a real problem to you in terms of symptoms.

Great replies so far! More please!

Jack - I kept the question very general on purpose. If I had said "to prevent a platelet drop", would that change any answers?

Any and all treatments are by definition taken to prevent a crash. But I presume the question is really referring to starting treatment when the count is high, in which case no, I'd prefer to wait and see a bit first. But as others say I know my ITP in as much as I know that a low count is probably not going to do much more than give me mouth blisters and bruises.

But I *do* take antibiotics daily and don't see it as quite the same. I find having an immune deficiency far more scary than the ITP and I can't think so much for myself there and feel that I have to simply do what I'm advised.

If I had said "to prevent a platelet drop", would that change any answers?

Not for me it wouldn't. At 9k-16k treated, I just don't have much wiggle-room to 'drop' from.
However, if we are playing the if game.....
IF I could maintain a count over 10k without treatment, I would not treat. WHERE DO I SIGN UP ???

Good point Ann; "Any and all treatments are by definition taken to prevent a crash."



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I believe it is the first encounter with being diagnosed that sets our disposition as to how/when to treat. When I was first diagnosed the call from my primary care physician went like this "your platelet count is 34K and it is very life threating - you could bleed to death" talk about scarring the sh*t out of me.

More that 6 years and two hematologist later - today my count is at 36K and I will not treat!!!!!

I don't believe I would treat to prevent a drop - just need to treat symptoms if they truly are life threatening (brain bleed, major surgery, etc....)

I treat to prevent bleeding.

To have a crash I think you would have to start out with some decent numbers- not 2K.

So I treat to raise my numbers to a safer count so as to prevent bleeding.

That said, the way I understand the question is that a person has a decent low count say 40K without treatment. Should they treat to prevent their count crashing to single numbers? No- the treatments are too toxic too risky. Watchful waiting is better.

"Any and all treatments are by definition taken to prevent a crash."

I'm a bit confused about this. I never treated to prevent a drop, I treated to get counts up from a drop. My first year of diagnosis, my Hemo wanted me to start 60 mg's of Prednisone when my count dropped to 60k. I did it. Looking back now, I think that was a bit premature and would not do it now. After that, I waited until I hit 10-15k.

Posey - I think you hit the nail on the head with your statements - I agree.

I wanted to see how each of us think about it which is why I asked this question. I'm interested in the different answers and how we all handle treatment decisions. In all the time we've been here, I don't think this discussion has ever come up. Not this specific anyway.

CindyAnn - I also agree with you about the doctors reactions. They can tend to set the tone.

Anyone else?

Sandi, I think it depends on how long you have had ITP and how much you know your own body. As you know I am fairly new to this and I made the choice to treat before anther crash but am thinking it is probably premature. Thus is a very busy time of year for me and time in the hospital can be very costly. I think I would lean towards treat before crash but now would let my counts go lower than what my hemo thought was low.I am just hoping for this to be acute.

I'm hoping to start a discussion and I hope everyone will join in. The question is:

Do you think it's necessary to treat to prevent a platelet crash? All opinions are welcome


Sandi,
I agree with others, I think it depends on each individual case,
your normal levels and the symptoms that accompany your crashes .
I was walking around for 15 years without any severe symptoms (bleeding gums & bruising)
but i had to get pumped up every time I needed surgery . When I had 1st brain bleed my count was around 25k , so I got a spleenectomy , they stayed around 150k for 10 months , then i was out of remission and they were back around 30k ??? so who knows ?? then I had a more svere brain bleed which required brain sugery , BUT ... since then (11 Months) I have been around 130-175K ??

go figure ?

But one thing I have not heard mention of here ,
does anyone know if it is really OK
to NOT get STAT CBC counts at a lab , such as Labcorp ?
in other words , my Dr had issues with the variations between stat & regular bloodwork
most often when i got my bloodwork done at labs the counts were lower ,
so my dr decided to get them done at the local hospital done immediately and the were
more accurate , usually 15-20k higher !.
This worries me

THANKS SuperDave
STAYING POSETIVE

Great question! And NO, absolutely not! The more I think about it the more interesting the question becomes - my count has run as low and 3 and 1 consistently over the last 4 months and I can honestly say that I continued work and felt exactly the same with a count of 1 as I did with a count of 200 on steroids (apart from the crappy side effects of the drugs) - in fact when the count was 1 the lab person who read the result of the blood test said they ran the blood through the machine and then did a physical read of the platelet and couldn't find it in the test tube lol so it makes me wonder - when the docs were busy panicking and getting frantic with the count being so low - what would have happened if we had just left it alone and waited to see what would happen? Would it have bounced back up without rhyme or reason just like it dropped or would something crazy have happened? Has anyone out there tried waiting to see what would happen?

[Never mind. Misunderstood the question.]

I suppose what I meant by "knowing your own itp" is knowing your own symptoms and what the risks are with your own symptoms and counts. As opposed to knowing what your itp will react to and foreseeing a crash before it happens. Does that make sense?

Equally - if my counts were to shift in the symptoms that show I may well shift the counts at which I feel safe. Today I feel safe at 40 but I can't guarantee that that will still be a safe count in days, months or years to come. The number matters less to me than the symptoms I'm presenting with. So I don't treat whilst I feel safe. I may feel a lot less safe if my haemo was not also on board with me though!! And I'm very glad I have this board to get a balanced argument from when I need it!

In another respect - I don't avoid all things that could potentially cause a crash. For example - I'm currently undergoing fertility treatment. I theorised that the meds I'm on could impact on my counts so I monitored them more carefully whilst taking the medication. But I still took it. I also still drink red wine (I know that affects aggregation rather than numbers - but it definitely gives me more symptoms!!). Does anyone actively try to avoid things that they suspect might affect their symptoms? Or "know" will?

Sandi wrote: "Any and all treatments are by definition taken to prevent a crash."

I'm a bit confused about this. I never treated to prevent a drop, I treated to get counts up from a drop.

Well, I've thought more about this now and agree that not all treatments are this way, but the TPOs and the immunosuppressants are maintenance drugs designed to prevent the count from crashing. Steroids, IVIG and WinRho don't because they are once only or with steroids once and then a long taper as it were. Except of course for those people who are left on steroids for ever. They fit the definition too.

Does that make more sense?

Yes, Ann. I was talking more about having a safe count but treating to keep it up. In that respect, I guess the question was too general, but it did prompt many different perspectives. N-Plate is used to prevent drops in people who cannot maintain a safe count. If you had a count of 100k though would you treat to keep it from going lower? Probably not. Two different scenarios, really.

Beag - your situation did prompt my question, but I am not judging your decisions. You don't have to justify it. Everyone does what they feel they have to do. I just thought that a good discussion about this might be helpful to some people because there are so many different situations and thoughts. All answers are based on individual experiences and what they have learned over time. Seeing the insight that others have gained can be very helpful.

Hospitalizations with low counts are rare, and doctors tend to do that more often with newly diagnosed people, so that might not be an on-going thing for you if counts do drop. I hope this is acute for you, but if not, you will be able to manage it. Symptoms are important and most people tend to go by that instead of numbers, but it takes time.

I am always very interested in the different ways that people view treatments and low counts. It's always amazing to see people evolve in their acceptance and management of ITP. I was a basket case at first, mostly because Prednisone did a number on me, but the more I learned, the calmer I became. It just takes time.

I did also answer your real question Sandi because I thought I knew what you meant. I get the impression you're losing patience with me and I'm really sorry. I know I look at things too deeply, it's my failing.... <slinks off>

Excellent comments all around.

Katsim wrote: "I suppose what I meant by "knowing your own itp" is knowing your own symptoms and what the risks are with your own symptoms and counts."

I think the question depends not only on what is dangerously low for an individual, but also on how close to that danger level is too risky. How close to dangerously low can one risk going without treating? One can be dangerously close to dangerously low, and that point varies between individuals.

Some people "rescue" more readily than others. Some respond to IVIG well, others not so well, and some cannot use it at all. Some respond quickly to steroids and some don't. For some, a healthy margin of error on the platelet count may be necessary to avoid a trip to the ER or worse. For others, they can get very close to dangerously low before treating. But, everyone has a margin of error that makes sense to them, and that margin of error is different for every person.

Then there is the cost of treatment, not just the dollar cost, but the time, the weight gain, the moon face, the sleepless nights, and the sometimes serious risks of treatment. It all has to be balanced when deciding when to treat. When all this has been balanced out, yes, often it is wise to treat to prevent platelet counts from crashing.

Ann wrote: I did also answer your real question Sandi because I thought I knew what you meant. I get the impression you're losing patience with me and I'm really sorry. I know I look at things too deeply, it's my failing.... <slinks off>

Oh good heavens no! I am not losing patience and it didn't even enter my mind. Sorry if I came off that way. You and I usually agree about everything. I think we're just miscommunication a bit.

Definitely an interesting discussion. And I agree it's individualized. I have had ITP over 20 years and for the first 15 never treated as my counts were "safe" usually around 50K and treatment options were worse than the living with lower counts.

The point came after a crash to 10K, Winrho every 6-8 weeks, a remission, then a relapse to find that fine line as to what count was too low. The TPO's have definitely given us more options, and I opt'd for Promatca when 25-30K was becoming my new normal. Had it been some of the older options with the side effects or I didn't have insurance coverage, I'm sure my line would have been a lower count. I also think that you need to consider at what count you have bleeding symptoms.

SuperDave

in other words , my Dr had issues with the variations between stat & regular bloodwork
most often when i got my blood work done at labs the counts were lower ,
so my dr decided to get them done at the local hospital done immediately

I have similar issues if I go to a draw center where it sits for hours before the main lab does the testing. Even with the purple hepronized tube. Fortunately, I can get a count in the hemo's office. If I'm concerned I'm low I just call and schedule a lab in the office - since a low count means a visit any way and I was typically up when they retested in the office.

Ann wrote:
But I *do* take antibiotics daily and don't see it as quite the same. I find having an immune deficiency far more scary than the ITP and I can't think so much for myself there and feel that I have to simply do what I'm advised.

That is strange because I am like you but go the opposite way. I have CVID and take 500mg of Zithromax (azithromycin) every three days yet I find the ITP the worst out of the 2.

For me the CVID has yet to give me any real trouble. Other then a bad year where I picked up a couple of slight chest infections I rarely get ill. So far it has had a very limited impact on my life.

ITP on the other has proved to be a pain in the bum. Preds are horrible and even thou I have been off them for just nearly 4 months now I am still feeling their effect in regards to my knee and back.

As far as the Revolade goes, I have been on that now for nearly 4 months and I have started to get a lot of what I call bone ache. My hemo says that whilst it is not common, it is not uncommon.

As to Sandi question, there are so many variables its nearly impossible to say. For myself its all about risk v reward.

What are the risks if I don't take x and if I do what will it guarantee or vastly increase the chances of stopping x from happening.

When my Immunologist wanted to put on azithromycin I looked at the possible side effects and then compared it to the benefits.

The possible benefits far out weighed the possible side effects so I accepted.

Bunnie,
Thanks for the response .
I also had that luxury , of my Hematologist doing a CBC at her office.
which is usually how we handled them whenever we had a suspicion of the Lab being too slow.
Unfortunately though , after having one of the best Oncologist/Hematologists in the state ,
She retired , and with her went the machine that they used for instant CBC readings !!!
I miss her imensely, as we developed a bond over our 15 years . So now I am forced to abide by my
Insurance companies policies and I only get "stat " blood work when deemed absolutely necessary
( when I go below 20K !! )
If you are in NJ ? maybe I can try yours ?
if my insurance accepts him/her .

THANK YOU -
SUPERDAVE
Staying posetive

Hi,
As most of the people of this forum said no to get any treatment while they are in range of their so called “safe range”

Just a thought… is it individual’ choice to decide upon when to get treated or depend upon Doctor’s decision one has to follow?

I understand in initial years of ITP we follow doctor’s advice and then gradually we learn to manage this. As we know there is no surety in ITP that the same treatment will work for you that did miracle for other, so we learn from our own experiences and at some point of time we get in capacity to decide upon this.

If I talk about my wife’s condition, this is her 2nd year of ITP, when she was diagnosed first time, it took her one week’s time to get recover to normal counts with promacta and steriods, then gradually tapered steroids and stopped completely at one point of time. Just 2 months later she crashed again and treated with same way but it was not so easy this time. It took her three months medication and weekly hospital visit followed by Rituxian, promacta and steroids and finally suggested splenectomy, but fortunately her count started stabilizing before her final date of splenectomy and she escaped from that. With the blessing of God her counts are in normal range from last five months (+200k) but she has been advised by her doctor take continuous dose of Dapsone and I believe and hope this is to prevent the further crash.

This is going good so far and if count crash again in future we will learn that no matter if she is taking this medicine, her count will drop so why not to choose to stay drug free when you are in normal range as we all know that these drugs have some side effects on body and there is no use of bearing these side effects when medicines are not working as we are expecting (Prevention) or at least not to use this particular medicine considering prevention.

Through this site, I heard from some people they are doing fine at count of 10k even though this is not the safe range and there are other people who are experiencing many difficulties at count of 40k that is considered the safe range.

I believe everyone here learning like this and getting educated about ITP from more experienced people who have learned to manage this jigsaw puzzle with passing years of their journey.

Yogesh

At age 23 with a count of 49k and basically led to believe that a bump on the head could led cranial bleeding and possible death. And now at presently at age 53 and thinking 49k could possibly be an unattainable summit. I would say the serenity prayer is the most likely answer.! Life is just to precious to stress about.