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low platelets doc says its ITP

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13 years 2 weeks ago #28299 by neel
low platelets doc says its ITP was created by neel
My brother routine CBc count on June 2012 showed normal platelet count of 150, his CBc on 26/9/12 showed platelet count of 120, thought it was an error, repeated the sample on 3/10/12 and th CBC report showed platelet count of 105. Shocked, though that might be due to side effects of drugs he was taking (Metformin, Dimicroin, Polybion, Evion, Contiflo Icon, Ginkocer). Stopped all drugs n 3/5/12. Repeated the CBC on 5/10/12 platelet count was 140. However took contiflo on 5/10/12 due to urine problem, but did not took any other medicine, Also took papaya leaf juice two times a day. Also took the numerous test ordered by Doc like dengue, HCV, HIV, ANA, ANTI Ds DNA etc. All test came negative. erepeated the CBC on 8/10/12 (today), Platelet count 95 ???. All other count are normal. Contaced oncologist. he is diagnosing it as ITP . My question is can it be due to these drugs he is taking ?

What to do Now ?

What to expect in furture if it is ITP ?

Can the count stay here or icnrease to normal level on their own from here ?

We are in shock and horrible state right now.

Kindly help

Regards,

Neel
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 2 weeks ago - 13 years 2 weeks ago #28302 by Sandi
Replied by Sandi on topic low platelets doc says its ITP
Neel:

It's okay, really. Your brother's counts are still quite high and not at any danger level. I don't even know if I'd consider this ITP yet. The current count for an ITP diagnosis is 100 and although your brother is below that, he's only had one reading barely below 100.

Your questions:

What to do now? Nothing. Monitor counts when the doctor suggests and in between, forget about it.

What to expect in future if it is ITP ? That is different for everyone, but if counts drop to treatment level (below 20 or 30), treatment may be needed. Some treatments cause remission and some do not. There is a list that you'd need to read if he got to that point.

Can the count stay here or increase to normal level on their own from here ? Yes! Absolutely. There are many people who live just fine with counts in that area. It is also very possible that they will go up.
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13 years 2 weeks ago #28315 by Dean
Replied by Dean on topic low platelets doc says its ITP
It will be OK!! So PLEASE try to relax. Side affects of medication? Possible. No real way to pinpoint what triggered the decrease in counts. There are so many things that can cause Platelets to drop. Your counts are basically in the monitor range. If counts continue to drop then teatment may be necessary. As Sandi stated, everyone is different. Some do just fine with counts of 50-100k, without any treatment. Now, IF you drop down into the 10-20k's, treatment may be needed. Alot of times Prednisone is tried first to see if counts respond, but generally counts will drop again when tapering off Prednisone. Everyone also responds to treatments differently. ITP is a "rollercoaster" ride. A wait and see game with treatments. His count may increase, decrease or level out at a lower number.
Best thing right now is not to stress out over it!! The last thing he needs right now is STRESS!!!

My counts were monitored when they hit 130k. Counts continued to drop. At 30k I was treated with Prednisone. This did not sustain counts. I have been as low as 4k. Rituxan has been the treatment that is working for me.
Great group of people here that have experienced what your brother is going through, so look around on this site for info.
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13 years 2 weeks ago #28327 by neel
Replied by neel on topic low platelets doc says its ITP
thanx for the response , however i want to know is the diagnosis correct ? It it ITP or not ? Its only 4 months that my father expited after batteling with MDS for 1 and half year, and i dont know whether it is coincedence or sheer bad bad luck that the same type of disease has come within 4 months. Is bone marrow biopsy necessary before diagnosing ITP ? Or can it be diagnosed with out bone marrow biopsy ? Rt now we are presumiing and hoping that it is due to medication he was taking and have stopped all medication hoping count will rebound soon. Kindly advise
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 2 weeks ago #28330 by Sandi
Replied by Sandi on topic low platelets doc says its ITP
Neel:

We can't tell you if this is ITP or not. Could be, probably is, but time will tell.

A bone marrow biopsy is not necessary to diagnose ITP, although some doctors do it anyway. How old is your brother?

Sometimes ITP is caused by medications, but it doesn't always go away when meds are stopped. At any rate, your brother has a very mild case at this point and there is no reason to really worry yet.
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13 years 2 weeks ago #28333 by neel
Replied by neel on topic low platelets doc says its ITP
thnx sandi, my bro is 44 yr old, to tell u the co incidence my father 65 yrs age was diagnosed with mds raeb ii on oct 2010, and lost his battle fighting mds on may this year. And now 4 months after his passing away we are again in the same boat of living life on the cbc reports. So u can very well imagine what our family is going thru rt now. We are angry and scared. Scared like hell
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 2 weeks ago #28338 by Sandi
Replied by Sandi on topic low platelets doc says its ITP
I know, I can understand that. It's unusual for someone as young as your brother to have MDS, so try not to worry. I'm sorry to hear about your Dad.
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13 years 2 weeks ago #28344 by Lindy
Replied by Lindy on topic low platelets doc says its ITP
neel, I know how you feel.

3 years ago, I was diagnosed with ITP.
My count varies from 50-89.
My doctor said no treament is needed unless count goes below 30 or when other counts are low.
Then I may also need to do BMB. I am 55 years old, much older than your brother.
Have been in the wait & watch mode since.


When I was first diagnosed its really scary cos I have lost my mother to MDS.
The rest of the family is equally worried.
This forum has helped to calm me & provided much info.
Of course I can't rule out treatment/MDS in the future.
I remember Sandi's words have helped me - "deal with it when it comes".
So in the meantime I try to live as normal as possible & so should your brother
& the rest of the family.
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13 years 2 weeks ago #28392 by neel
Replied by neel on topic low platelets doc says its ITP
todays i.e 11/10 platelet count is 84000. Kindly advise what to do ? The platelets are falling and the fall is also severe.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 2 weeks ago #28396 by Sandi
Replied by Sandi on topic low platelets doc says its ITP
Neel:

He still doesn't have to do anything yet. His counts are above treatment level. Treatments have side effects and you want to avoid that as long as you can.

The thing you need to know is that platelet counts fluctuate all the time. You could get two different readings in the same day. They could be 84 one day and 95 the next.

Stay calm. Even if his counts keep dropping, it will be okay. His doctor will tell him when treatment is necessary and he'll get through it. Read as much as you can about ITP - you will find that is it generally a very manageable condition.
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13 years 2 weeks ago #28405 by neel
Replied by neel on topic low platelets doc says its ITP
Thanx for response sandi, u c we have seen and gone thru low platelet issue for 2 yrs. My father's platelet never went above 40000 in those 2 years. What we are fearing is how the things r unfolding. We want him to be normal not a person with itp. We hoped that it might be due to side effects of medicine and will resolve on its own once the medicines are stopped. He is not taking any medicine since 5 of this month. However the things are unfolding it seems that this low platelet is not due to side effect of medicine and might be itp. Then we hoped that whatever, the platelet might stable here and we might not have to go for any treatment. However the way they are falling is what is making us concerned. We know 84000 is a ok number, but what is building up the anxity is what if they keep on falling ? What if they dont stablize?
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13 years 2 weeks ago #28407 by Nitin
Replied by Nitin on topic low platelets doc says its ITP
Neel pls discuss with your doc if your brother can do without medication until his counts go below 30k.
Meanwhile keep a check on his counts and try not to stress much. Best of luck to bro.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 2 weeks ago #28410 by Sandi
Replied by Sandi on topic low platelets doc says its ITP
Neel:

I know you want your brother to be normal without any health issues. I have a sister that has ulcerative colitis and I want her to be normal too. I have Lupus and ITP and want the same thing for myself. Unfortunately, life doesn't always go the right way. When faced with a life-changing medical issue, you just have to learn as much as you can and do what you have to do. Assuming he does have ITP, he most likely will learn to manage it and can live a normal life.

ITP is different than MDS because people with ITP have larger platelets that work quite well. A person with ITP can live just fine with 40,000. You can worry yourself to death but that won't make things get better nor will it help your brother. There are many positive ITP stories and people have remissions all the time. If he has to treat, it's not the end of the world. I guarantee you that every person here has treated and they are all still productive, happy people. The newly diagnosed have the hardest time, but it does get better.