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Old 05-13-2010, 09:18 AM   #1
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Very low platelet count

My 68 year old mother has a very low platelet count... it was recently down to 6...they put her on prednisone and it jumped to 21. She went back for tests last week and it was back down to 13... they explained 'normal' is 150-400. She is to do NOTHING but rest...they are worried about her bleeding out somewhere.

The ONLY symptom she was having was easy bruising. She has never been a sick person, never has even had a headache in her life... very healthy and in amazing shape for 68. Her only ailment has been some high blood pressure for which she has been on a med for and a diuretic (Hydrochlorothiazide) - which in doing research I found to have negative effects on blood platelets and can cause them to get low.

Her doctor is in contact with a specialist from Vancouver and if her numbers arent better next week they want to send her to Vancouver and do a bone marrow aspiration.

They have told her its not cancer (can they know this soon with few tests?) and thats its idiopathic...

Anyone deal with this? She is scared and Im worried sick...the doc said they are pretty sure its treatable but so far the treatment isnt working...

Any natural things that wont interfere with the predinose that she could take? I read that vitamin C is important...as are the Omega oils...and certain foods like leafy greens, citrus, papaya etc are all beneficial... Any ideas?

Thanks so much....

Last edited by QtrHrsMomma; 05-13-2010 at 02:33 PM.

 
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Old 05-14-2010, 09:54 AM   #2
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Re: Very low platelet count

I am 60. About 2 1/2 years ago was diagnosed with ITP - Immune Thrombocytopenia Purpura. (Until just recently, the "I" stood for "idiopathic", but now they know the cause is autoimmune and is no longer idiopathic.) My platelets were 26 at diagnosis, and like your mother, I had no symptoms except unexplained bruising and a petechial rash. I chose not to treat at all until my count fell to 4 last summer and my doc insisted I take a small dose of prednisone to boost it above 30, if possible. I responded very well to only 20 mgs. The dose has been gradually lowered to the current mere 5 mgs/2x weekly; my last count was 68. Anything above 30 is considered ok; clotting will be essentially normal at that count. The goal should be to maintain a safe count, not necessarily a "normal" one.

Because of my age, which is more at risk for leukemia, I had a bone marrow aspiration to rule that out. But that isn't done as a rule any more for a younger person with an unexplained low count.

There are still some MDs around who believe that splenectomy is the first-line treatment for ITP. It isn't, so don't allow anyone to press that on your mother except as a last resort for sustained counts below 10. She does not have to live in a bubble; she should continue to lead an active, involved life, but should be vigilant about falling or knocking her head hard. Those present the most danger for an elderly person with low platelets.

Unfortunately, the drug treatments for this, including high-dose prednisone, are not without risks and side effects which need to be weighed against the tolerance limits of the patient.

Taking 2000 mgs of vitamin C a day - all in one dose in the a.m. - won't hurt and may help by strengthening the integrity of the blood vessel walls, which can help prevent spontaneous bleeding. But the formal studies about the value of this are conflicting. I can tell you my personal experience - I began taking it right after my diagnosis. I got far fewer bruises while taking it; recently, I stopped taking it and I'm having more bruising. So take that for what it's worth.

This is one condition where she'll want to do all her homework instead of allowing an MD to dictate what she should do.
Wishing her well!

Last edited by midwest1; 05-14-2010 at 09:55 AM.

 
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Old 05-14-2010, 10:17 PM   #3
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Re: Very low platelet count

Hey there,

I am 22 years old. I was diagnosed with ITP back in 2007. One day I had awoken to find my body was covered in painless bruises and petechiae. My doctor was concerned that this could have been Leukemia, but thankfully after having some bloodwork done I was diagnosed with ITP. My platelet count was 12 upon diagnosis. Like midwest1, I went through various treatments in hopes of raising my platelet count. However, it would never stabilize. One day it'd be up, then the next down. At the time my doctor had suggested that I participate in an experimental drug trial for a new medication with the intent of increasing the body's platelet production. As part of the qualifications for the trial, I was instructed to cease use of all existing medications. For the past five or six years I had been taking generic Anafranil(Clomipramine), a tricyclic antidepressant used for treating Obsessive Compulsive Disorder. However, upon stopping the Anafranil my platelet count had risen significantly. I was no longer qualified for the trial. Over the next few months my platelet count remained stable and continued to increase. Unfortunately, I had a relapse of my condition and immediately jumped back on the Anafranil. My platelet count started diving again. It became apparent that the Anafranil was causing my ITP. I have remained off of the drug for a few years now, and my platelet count has remained normal. This was just my personal experience with the condition. I am unsure as to whether or not your mother or the other poster may be on similar medications that could be influencing their issues. It may be something to consider looking into.

All the best to both of you,

Matt

Last edited by rockermatt; 05-14-2010 at 10:31 PM. Reason: correction

 
Old 05-15-2010, 03:35 PM   #4
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Re: Very low platelet count

Awww thanks for the replies guys!

Mom is currently on 50 mg of prednisone once a day... I told her about the vitamin C thing and that even if it doesnt raise her platelets that it can at least make the ones she does have healthier... I wasnt sure on the dosage tho - 2000 mg you say? Thanks so much...

I also told her about a few things I found online - the papaya leaf juice thing and the raw seseme seed thing... now Im not sure if it'll make any difference BUT they are things that cant harm her at least... she couldnt find the papaya leaf juice so she bought regular old papayas... LOL I guess they are healthy things she can eat anyways...

I hope her numbers are back up to at least 20 this coming week... she tests Mondays and gets results Wednesdays... keep her in your thoughts please... otherwise she will need to go to the city and have the bone marrow test thing... I told her about what I found about the one med she is on... the diuretic - she wanted to discontinue it right away but I told her she should do it with her doctors guidance... Im not sure of the repercussions of going off that sort of med and whether she needs to wean off it or not... so I think its safer if she tells the doc about her want to try and go off it and see if her platelets increase... its worth a try.

Thanks so much for your help and kind words... the thought of anything happening to my mom makes me sick to my stomach... I cant imagine my world without her... she is very french so sometimes there is a bit of a language issue with her... understanding big words etc, so I began going to the doc with her as her advocate.... I refuse to let anyone do anything experimental to her... or anything too drastic until we know more about whats going on.

Thanks again.
Tammy

 
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Old 02-02-2011, 10:14 AM   #5
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Re: Very low platelet count

So its been months and we are still dealing with the low platelets.

Back in November my mom was admitted to the hospital with a count of 2. She received IVIg treatments and her count went up to about 170 within days... Mom was in the hospital for a week. In the next few days it dropped to 140 then the next week it fell to 70. Then a steady drop since... They have tried prednisone for months on end and the jump in numbers isn't enough to warrant the side effects.

I was reading some studies on h. pylori and its effects on platelets and made sure she went in to be tested. She tested positive so they started her on the required antibiotics and pantoloc. The day she started the meds she was at a platelet count of 20 and within 2 days of the start of the antibiotics her numbers jumped up to 36. They fell back down to 31 this week. She is still currently taking the antibiotics - a few more days left.

We saw her specialist yesterday and his words were 'as long as you are above 20 you won't die'. Pretty bad bedside manner IMO. He doesn't live here so flies in once a month or every few months. He suggested she only check her platelets every 2 weeks now instead of once a week. My moms numbers drop soooo fast sometimes that she is scared to go down to only once every 2 weeks.
She had some bleeding yesterday, vaginally, and was checked out - the doc said her cervix was red but was no longer bleeding. She has had no other bleeding though, even when she was down to 2. If she bleeds again he will have her see the gyno.

Anyone have insight about the h.pylori and its correlation to ITP? Apparently it can do something to change the way platelets are produced or something. When I told our family doc to test her and he looked into it he said he thought I might be on the right track...

They mentioned taking her spleen, but when she was at 2 they didn't want to in fear she bleed out during surgery. I mentioned that I found out about Rituximab and our doc hadn't even heard of it, when he looked into it he said it sounded like it might be worth trying. When I read her hematologist report she had mentioned Rituximab in it... why can't the docs all get on the same page? I suppose its probably cause her hematologist and the internal med doc she sees are 1200 kms away... soooo
frustrating...

I should add that all meds she was on before (the blood pressure meds with potential to lower platelets) have been stopped and her blood pressure is fairly stable, a bit high at times but not enough to have warranted being on them for years like she was... there has been no rise in numbers though since stopping them.
She often had insomnia and anxiety attacks and I def. notice when her numbers are low - as she seems to have trouble with her eyes and blurriness when they go down... her eyes look weird when she gets low... She has had a head CT scan to check for any bleeding etc and it was all good.

Cookies to all who got through this...

Last edited by QtrHrsMomma; 02-02-2011 at 10:20 AM. Reason: More info added

 
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Old 02-03-2011, 07:43 AM   #6
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Re: Very low platelet count

Ohhh... I just love cookies. SHS

I'm sorry your mother is continuing to have a major problem with her platelets. But my gosh... Her doctors must not be very educated about all the treatments that can be tried. Rituxan is becoming a common treatment which is effective for many. In addition to that and steroids, there is WinRho, NPlate, Promacta, IVIg ( which usually has temporary effects, but not always).

Her doctors may not understand that splenectomy in a person her age only has about a 60% chance of working at all, much less continuing to work long-term.

I recently asked my own hematologist about the connection to h.Pylori. He said it's absolutely connected with ITP and worth being tested and treated for, if present. I have read though, that the success rate in reversing ITP by treating h.Pylori is lower in the US than in Italy or Japan [could be a difference in the bacteria] and that when it does work, it works best when done soon after the ITP diagnosis.

I have not heard of her particular set of symptoms when platelets are low. The most common one - other than unusual bleeding and bruising - is fatigue. Doctors are just beginning to accept that as a sign; up till recently, they refused to believe it. I don't understand the whole process, but apparently platelets carry seratonin - or something? That has something to do with sleep, doesn't it? ??? Am just not sure.

If I haven't mentioned it to you yet, you can get reliable, comprehensive info about the treatments from the Platelet Disorder Support Assn. Gather up all the info you can to take to the doctors. Education is your mother's best friend when it comes to this, because as you've found, doctors often don't make the grade.

 
Old 02-07-2011, 08:43 AM   #7
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Re: Very low platelet count

She is feeling pretty good although her numbers have been between 20-30'ish. She goes for another count today - lets hope its up even higher!

 
Old 03-28-2011, 10:33 PM   #8
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Re: Very low platelet count

My dad has a low platelet count, but only 132. He had a gallbladder attack and it cause pancreatitis. His count went down to 120 went back up to 134 and now down to 132. He's 87. Does she have any gallbladder issues? The stones can pass thru the bile duct to cause infection to liver and pancreas.

 
Old 07-26-2011, 05:22 PM   #9
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Re: Very low platelet count

Hi guys! Figured I would give a bit of an update... Mom is still dealing with her ITP issues... still unresolved. She received another IVig treatment a few weeks ago after her levels dropped to 12 (one doc said 8 - who knows?) and after the treatment her platelets jumped up to 143 but have now dropped back down to to the 120's... they just continually go down. She went back on the prednisone, has now weaned off and has started azathioprine - anyone have luck with this drug?
She is still dealing with odd eye issues like dizziness etc but has had a CT scan and all sorts of tests and everything is good there... her spleen has been ultrasounded numerous times and there is nothing going on with it...

What an absolutely frustrating condition this ITP is... especially for an older lady with language barriers (she is very french!) who thinks that maybe because she dyed her hair or drank coffee in the past that it may have 'caused it'... poor mom... I make her understand it is NOTHING that she did to herself - she just doesn't understand. I hope we have good luck with the new meds...

 
Old 07-28-2011, 08:19 AM   #10
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Re: Very low platelet count

I hope she has good luck with the new med, too. I don't know anything about it, though. I haven't needed anything since that one 8-month long course of prednisone.

From what I know, if counts are taken back-to-back immediately after one another, the number can vary by several thousand. So - 8...12... - is pretty much the same thing.

I think it's human nature to consider how one may have caused themselves any disease. I did the same thing with my thyroid disease, but only to a lesser extent with the ITP; because by then, I knew it was useless to ruminate over it too much.

In case it gives you hope, I can report that ever since I weaned off the pred, my count has held pretty steady at just around 100. Still not normal, but far from dangerous. I have a feeling that I'm "in remission" [Knock wood!], and that it's possible I can coast along for a long time this way. Positive thinking can't hurt, right?

Thanks for the update and good health to both you and mom.

 
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