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Low platelets

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  • Susan Michnevitz
    I just started up on this list the other day and I m extremely concerned. My husband was diagnosed in Oct99 after 2 months of telling us he had Level 4
    Message 1 of 14 , Jan 11, 2000
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      I just started up on this list the other day and I'm extremely
      concerned. My husband was diagnosed in Oct99 after 2 months of telling
      us he had Level 4 Lymphoma (oops sorry - good thing they didn't whip out
      his spleen as planned) This has apparently been ticking away since
      transfusions he received in 1976.
      We haven't been too impressed with his treatment all along but there's
      not an awful lot to choose from in NW Illinois. Luckily, my med plan has
      just changed to a hosp in dubuque and I;m already much happier with just
      the first phone call. My real concern here is your discussion on low
      platelets and how you shouldn't go on combo then, Big Boy started with
      only 50K 9 weeks ago and after 4 weeks it had dropped to 31K. His blood
      was like water and was seeping into his month overnight (gross) But the
      Dr's suggestion was to back off to only 2 shots per week, Now another 5
      weeks later the bleeding has diminished but is that leaving the meds at
      a level that can do any good ? He's finally feeling a little bit better
      this week finally but that's compared to how awfully low he had gotten
      still a long way to go - We're going into the new Dr thurs but I want to
      know what to ask. You all seem so knowledgable about your readings and
      we never even got told or explained about this. The only thing we were
      warned about was mild, flu like symptoms - boy are we ignorant!!!!! A
      lighthearted , humorous and very informative Combo Survival guide from A
      to Z can be found through www.bascobill.com. It gave me my first laugh
      in weeks.
      What should we be asking, what should we be being told -
      What about platelets
      This is only the begiining but any help here is appreciated
      Regards
      Susan & Big Boy
    • mconnors@cyberpath.com
      I am on my 10 week of the Rebetron/Ribavirin (800)/Amandatine (400) I have done very well with the sides but my platelets keep dropping and have now taken
      Message 2 of 14 , Jul 10, 2001
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        I am on my 10 week of the Rebetron/Ribavirin (800)/Amandatine (400)

        I have done very well with the sides but my platelets keep dropping
        and have now taken dive (down 20 in the past week) currently at 71.
        I was told they would have to cut back TX if I drop below 50. I really
        don't want to do that. What dangers could I experience as they continue
        to drop. (Internal bleeding, varies?)

        Has anyone had a similar experience? I have heard of Neumega - has
        anyone used it?

        Any hints at what I could do to improve my platelets would be
        appreciated as well as any new drugs being used for a hematopoiet
        stimulant.

        Thanks for your time and all the information you provide me through this
        list.

        Sincerely,

        Mike


        Hepatitis C Support Forum
        http://www.delphi.com/hepconline/start
      • Alley/Pat
        Mike, sorry to hear about your platelets. I dunno much about that tho sorry. The whole time I was on treatment my platelets lowered a bit, but never
        Message 3 of 14 , Jul 12, 2001
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          Mike,

          sorry to hear about your platelets. I dunno much about that tho sorry. The
          whole time I was on treatment my platelets lowered a bit, but never
          dangerously low. I don't know why some do and some don't, maybe if we knew
          we could help everyone tolerate treatment better.

          Good luck

          alley
        • claudine intexas
          Hi Mike, The low platelets are a side effect of the interferon. Doctors seem to be getting worried less and less about low platelets during treatment. I guess
          Message 4 of 14 , Jul 12, 2001
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            Hi Mike,
            The low platelets are a side effect of the
            interferon. Doctors seem to be getting worried less
            and less about low platelets during treatment. I guess
            people just do better even when the platelets are low
            than they used to assume they would. 50 seems to be
            the point now where they are reducing the dose of
            interferon. I have also heard of Neumega (generic
            name oprelvekin - Interleukin 11) being used, and I
            believe there is a doctor doing a study right now
            using it along with Rebetron. You can look up more
            info on Neumega at:
            http://www.rxlist.com/cgi/generic3/oprelvek.htm

            It seems like I used to have some info on it's use in
            HCV somewhere, I'll see if I can find it and post it.
            The only other things I have ever heard about
            increasing platelets are to make sure you are getting
            adequate B vitamins, especially B12 and folic acid,
            and (believe it or not) one of the possible side
            effects of ribavirin, according to Dr. E. Lawitz at
            the Brook Army Medical Center, is increased platelets!
            I had never heard or read that anywhere before he
            spoke at our local support group meeting.
            Good luck,
            Claudine



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          • AVansi7465@aol.com
            In a message dated 7/12/2001 10:36:38 PM Eastern Daylight Time, ... Dear Mike, Mine dropped into the cellar........one of the reasons that my doctor and I
            Message 5 of 14 , Jul 13, 2001
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              In a message dated 7/12/2001 10:36:38 PM Eastern Daylight Time,
              alleypat@... writes:


              > Mike,
              >
              > sorry to hear about your platelets. I dunno much about that tho sorry. The
              > whole time I was on treatment my platelets lowered a bit, but never
              > dangerously low. I don't know why some do and some don't, maybe if we knew
              > we could help everyone tolerate treatment better.
              >
              > Good luck
              >

              Dear Mike,
              Mine dropped into the cellar........one of the reasons that my doctor and I
              decided that I was Ribavirin intolerant. BE VERY CAREFUL about using knives
              or anything that has a cutting edge. That includes paper. You could have a
              REAL problem with blood clotting. I know everyone is telling you not to, but
              look at your RBC (red blood cell count). If you are developing anemia along
              with a low platelet count, temporarily discontinue treatment until both of
              them get, at least into the low normal range. You don't want to develop
              anemia along with everything else.
              You might want to consider discussing continuing treatment, but temporarily
              lowering your dosage, or skipping a something. I had to go by Navy
              protocol.....or else. If I had known then, what I know now, I would have
              cut the Ribavirin pills in half before I swallowed them. But that was then
              and this is now.
              Hope this helps.
              Anne


              [Non-text portions of this message have been removed]
            • Marilyn
              Ann, WHY? do you believe it is the rebratron that lowers or has an effect on the platelet count? You are the second person who has already mentioned this and
              Message 6 of 14 , Jul 14, 2001
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                Ann, WHY? do you believe it is the rebratron that lowers or has
                an effect on the platelet count? You are the second person who
                has already mentioned this and how you would have cut your own
                dosage of the rebratron. I am continually told that rebratron
                has or may have an effect on anemia..but it is the interferon
                that effects the platelet count. So, basically my question to
                you is where did you get the idea or information that it is the
                rebratron that effects the 'platelet' count? Very curious to
                know the answer. Thank you
                --- AVansi7465@... wrote:
                > In a message dated 7/12/2001 10:36:38 PM Eastern Daylight
                > Time,
                > alleypat@... writes:
                >
                >
                > > Mike,
                > >
                > > sorry to hear about your platelets. I dunno much about that
                > tho sorry. The
                > > whole time I was on treatment my platelets lowered a bit,
                > but never
                > > dangerously low. I don't know why some do and some don't,
                > maybe if we knew
                > > we could help everyone tolerate treatment better.
                > >
                > > Good luck
                > >
                >
                > Dear Mike,
                > Mine dropped into the cellar........one of the reasons that my
                > doctor and I
                > decided that I was Ribavirin intolerant. BE VERY CAREFUL
                > about using knives
                > or anything that has a cutting edge. That includes paper.
                > You could have a
                > REAL problem with blood clotting. I know everyone is telling
                > you not to, but
                > look at your RBC (red blood cell count). If you are
                > developing anemia along
                > with a low platelet count, temporarily discontinue treatment
                > until both of
                > them get, at least into the low normal range. You don't want
                > to develop
                > anemia along with everything else.
                > You might want to consider discussing continuing treatment,
                > but temporarily
                > lowering your dosage, or skipping a something. I had to go by
                > Navy
                > protocol.....or else. If I had known then, what I know now,
                > I would have
                > cut the Ribavirin pills in half before I swallowed them. But
                > that was then
                > and this is now.
                > Hope this helps.
                > Anne
                >
                >
                > [Non-text portions of this message have been removed]
                >
                >


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              • Edie Rodriguez
                Mike, I am one of Dr. Lawitz s patients. My platelets have dropped about 80% and he doesn t seem to be concerned. I have another blood draw in one week and
                Message 7 of 14 , Jul 14, 2001
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                  Mike,

                  I am one of Dr. Lawitz's patients.

                  My platelets have dropped about 80% and he doesn't seem to be concerned. I
                  have another blood draw in one week and will let you know what level it is
                  now if you want. They dropped fast in the beginning and then started to
                  slow way down but haven't gone up at in all in 4 months I have been on
                  combo. I think my last blood draw my platelets were like 120.

                  So far, the only thing I have noticed is that I bruise more easily (and I am
                  unsure that this is caused by the platelet's, but I think so). Otherwise, I
                  don't think it is effecting me.

                  Edie

                  ----- Original Message -----
                  From: "claudine intexas" <claudineintexas@...>
                  To: <GIWorld-Hepatitis@yahoogroups.com>
                  Sent: Friday, July 13, 2001 1:16 AM
                  Subject: Re: [GIWorld-Hepatitis] Low platelets


                  > Hi Mike,
                  > The low platelets are a side effect of the
                  > interferon. Doctors seem to be getting worried less
                  > and less about low platelets during treatment. I guess
                  > people just do better even when the platelets are low
                  > than they used to assume they would. 50 seems to be
                  > the point now where they are reducing the dose of
                  > interferon. I have also heard of Neumega (generic
                  > name oprelvekin - Interleukin 11) being used, and I
                  > believe there is a doctor doing a study right now
                  > using it along with Rebetron. You can look up more
                  > info on Neumega at:
                  > http://www.rxlist.com/cgi/generic3/oprelvek.htm
                  >
                  > It seems like I used to have some info on it's use in
                  > HCV somewhere, I'll see if I can find it and post it.
                  > The only other things I have ever heard about
                  > increasing platelets are to make sure you are getting
                  > adequate B vitamins, especially B12 and folic acid,
                  > and (believe it or not) one of the possible side
                  > effects of ribavirin, according to Dr. E. Lawitz at
                  > the Brook Army Medical Center, is increased platelets!
                  > I had never heard or read that anywhere before he
                  > spoke at our local support group meeting.
                  > Good luck,
                  > Claudine
                  >
                  >
                  >
                  > __________________________________________________
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                • Doc
                  Youre right it is IFN which effects the platelets and not Ribavirin. Dr Sharat C Misra MD, DM ... From: Marilyn To: GIWorld-Hepatitis@yahoogroups.com Sent:
                  Message 8 of 14 , Jul 14, 2001
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                    Youre right it is IFN which effects the platelets and not Ribavirin.

                    Dr Sharat C Misra MD, DM

                    ----- Original Message -----
                    From: Marilyn
                    To: GIWorld-Hepatitis@yahoogroups.com
                    Sent: Saturday, July 14, 2001 6:25 PM
                    Subject: Re: [GIWorld-Hepatitis] Low platelets


                    Ann, WHY? do you believe it is the rebratron that lowers or has
                    an effect on the platelet count? You are the second person who
                    has already mentioned this and how you would have cut your own
                    dosage of the rebratron. I am continually told that rebratron
                    has or may have an effect on anemia..but it is the interferon
                    that effects the platelet count. So, basically my question to
                    you is where did you get the idea or information that it is the
                    rebratron that effects the 'platelet' count? Very curious to
                    know the answer. Thank you
                    --- AVansi7465@... wrote:
                    > In a message dated 7/12/2001 10:36:38 PM Eastern Daylight
                    > Time,
                    > alleypat@... writes:
                    >



                    [Non-text portions of this message have been removed]
                  • mconnors@cyberpath.com
                    Thanks for your reply, Edie. I had my weekly blood test and and I ll be darned after dropping 20 points last week - it gained 30 this week (now at 101) This is
                    Message 9 of 14 , Jul 16, 2001
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                      Thanks for your reply, Edie.

                      I had my weekly blood test and and I'll be darned after dropping 20
                      points last week - it gained 30 this week (now at 101) This is a bit
                      like a roller coaster ride, huh?

                      I think that water may have been the culprit as I made a concerted
                      effort to drink lots more. II just moved the water closer to the
                      computer. :)

                      I'm right behind you at 3 months of TX. Have you ahd a PCR yet?

                      Wishing you well,

                      Mike


                      Hepatitis C Support Forum
                      http://www.delphi.com/hepconline/start

                      Edie Rodriguez wrote:

                      > Mike,
                      > My platelets have dropped about 80% and he doesn't seem to be
                      > concerned.

                      Hepatitis C Support Forum
                      http://www.delphi.com/hepconline/start
                    • Edie Rodriguez
                      Mike, I have not had my PCR done since the beginning of treatment. It was 3.2 million copies then. Doctor says he is going to do another PCR at 24 weeks of
                      Message 10 of 14 , Jul 16, 2001
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                        Mike,

                        I have not had my PCR done since the beginning of treatment. It was 3.2
                        million copies then.

                        Doctor says he is going to do another PCR at 24 weeks of treatment. I got
                        about 7.5 weeks to go until that happens. Then, if I have dropped a
                        logrithm (in other words, drop a zero off of 3,200,000 copies), then I get
                        to go on with treatment until 44 weeks. If I haven't dropped at least a
                        logrithm, then he is going to take me off treatment.

                        I can't hardly wait to get to week 24 to see if this is working.

                        I can't hardly drink enough water! I drank 4.5 liters of just plain water
                        last week DAILY. I also drank a half gallon of Gatorade in addition to the
                        water DAILY. And I am still dehydrated!

                        Does anyone know how much is too much to drink? I am concerned about
                        overworking/damaging my kidneys.

                        Edie

                        ----- Original Message -----
                        From: <mconnors@...>
                        To: <GIWorld-Hepatitis@yahoogroups.com>
                        Sent: Monday, July 16, 2001 6:30 PM
                        Subject: [GIWorld-Hepatitis] Re:Low platelets


                        > Thanks for your reply, Edie.
                        >
                        > I had my weekly blood test and and I'll be darned after dropping 20
                        > points last week - it gained 30 this week (now at 101) This is a bit
                        > like a roller coaster ride, huh?
                        >
                        > I think that water may have been the culprit as I made a concerted
                        > effort to drink lots more. II just moved the water closer to the
                        > computer. :)
                        >
                        > I'm right behind you at 3 months of TX. Have you ahd a PCR yet?
                        >
                        > Wishing you well,
                        >
                        > Mike
                        >
                        >
                        > Hepatitis C Support Forum
                        > http://www.delphi.com/hepconline/start
                        >
                        > Edie Rodriguez wrote:
                        >
                        > > Mike,
                        > > My platelets have dropped about 80% and he doesn't seem to be
                        > > concerned.
                        >
                        > Hepatitis C Support Forum
                        > http://www.delphi.com/hepconline/start
                        >
                        >
                        >
                        > Welcome to GIHepWorld
                        >
                        > Post message: GIWorld-Hepatitis@yahoogroups.com
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                      • Constance Dickson
                        ... Keep an eye on your Blood Sugar!!! I was doing the same thing and found out in the ER I had developed Diabetes. I have always been a big water drinker so
                        Message 11 of 14 , Jul 16, 2001
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                          > I can't hardly drink enough water! I drank 4.5
                          > liters of just plain water
                          > last week DAILY. I also drank a half gallon of
                          > Gatorade in addition to the
                          > water DAILY. And I am still dehydrated!
                          >
                          > Does anyone know how much is too much to drink? I
                          > am concerned about
                          > overworking/damaging my kidneys.

                          Keep an eye on your Blood Sugar!!!
                          I was doing the same thing and found out in the ER I
                          had developed Diabetes. I have always been a big
                          water drinker so I really did not pay much attention
                          to it. I still probably drink around 1 1/2 gallons a
                          day. I even drink it during the night when I wake up.

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                        • Alley/Pat
                          Message 12 of 14 , Jul 21, 2001
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                            <<Ann, WHY? do you believe it is the rebratron that lowers or has
                            an effect on the platelet count? You are the second person who
                            has already mentioned this and how you would have cut your own
                            dosage of the rebratron. I am continually told that rebratron
                            has or may have an effect on anemia..but it is the interferon
                            that effects the platelet count. So, basically my question to
                            you is where did you get the idea or information that it is the
                            rebratron that effects the 'platelet' count? >>

                            I'm wondering if we're not confusing "rebetron" which is the combination of
                            meds with "ribavarin" which is the pills.

                            Both the meds will cause problems, and I'm sure the experts here can tell
                            you which one causes which.

                            Just wanted to clarify the wording and make sure that's what you meant :)
                          • Tatezi
                            Doc sent through a post after Ann s original message that it is the interferon that causes the low platelettes..... ... -- The greatness of a nation and its
                            Message 13 of 14 , Jul 21, 2001
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                              Doc sent through a post after Ann's original message that it is the
                              interferon that causes the low platelettes.....

                              Alley/Pat wrote:

                              > <<Ann, WHY? do you believe it is the rebratron that lowers or has
                              > an effect on the platelet count? You are the second person who
                              > has already mentioned this and how you would have cut your own
                              > dosage of the rebratron. I am continually told that rebratron
                              > has or may have an effect on anemia..but it is the interferon
                              > that effects the platelet count. So, basically my question to
                              > you is where did you get the idea or information that it is the
                              > rebratron that effects the 'platelet' count? >>
                              >
                              > I'm wondering if we're not confusing "rebetron" which is the
                              > combination of
                              > meds with "ribavarin" which is the pills.
                              >
                              > Both the meds will cause problems, and I'm sure the experts here can
                              > tell
                              > you which one causes which.
                              >
                              > Just wanted to clarify the wording and make sure that's what you meant
                              > :)
                              >
                              >
                              > Welcome to GIHepWorld
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                              way its animals are treated." ~Mahatma Gandhi



                              [Non-text portions of this message have been removed]
                            • Alley/Pat
                              Message 14 of 14 , Aug 2 6:42 PM
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                                <<Ann, WHY? do you believe it is the rebratron that lowers or has
                                > an effect on the platelet count? >>

                                <<Doc sent through a post after Ann's original message that it is the
                                interferon that causes the low platelettes.....>>

                                Yes, Interferon is one part of the REBETRON. Rebetron is the brand name for
                                Interferon and Ribavarin packaged together. That is what got me confused.
                                Perhaps she meant she thot the Ribavarin lowered her platelets, but Doc told
                                her it was the Interferon. So you could say the Rebetron did haha just one
                                half of it.

                                Hope it's better.

                                alley
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