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Hydrea
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Delay starting hydrea for vaccines?
Unfortunately, this question came to me after I saw the doctor. A month ago, I was referred to a hematologist for abdominal pain, abnormal CBC and splenomegaly. This week, after finding JAK2 and a confirmatory bone marrow analysis, the doctor prescribed 500mg HU per day for PV and scheduled a return
Unfortunately, this question came to me after I saw the doctor. A month ago, I was referred to a hematologist for abdominal pain, abnormal CBC and splenomegaly. This week, after finding JAK2 and a confirmatory bone marrow analysis, the doctor prescribed 500mg HU per day for PV and scheduled a return
Scroop
in
MPN Voice
8 months ago
Platelets and diet
After a few weeks of receiving weekly vene sections and a couple of months on
hydrea
, my polycythemia vera is coming down. Haemoglobin and hematocrit are within the normal range, but my platelet count has gone up by almost 200 points since last week's count.
After a few weeks of receiving weekly vene sections and a couple of months on
hydrea
, my polycythemia vera is coming down. Haemoglobin and hematocrit are within the normal range, but my platelet count has gone up by almost 200 points since last week's count.
Deya08
in
MPN Voice
1 year ago
Shocking Price of Jakafi
I have been having lots of side effects from
Hydrea
, so my Dr. suggested a possible change to Jakafi. When I called my mail order pharmacy to price it, I was told that for a 90 day supply it would be $20,857, of which I would have to pay 33% or $6,882! How many people can do that?
I have been having lots of side effects from
Hydrea
, so my Dr. suggested a possible change to Jakafi. When I called my mail order pharmacy to price it, I was told that for a 90 day supply it would be $20,857, of which I would have to pay 33% or $6,882! How many people can do that?
dogsandhorses
in
MPN Voice
1 year ago
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2 weeks on HU - first spot check š
had my first bloods taken since starting
hydrea
two weeks ago. All bloods in normal range and platelets down from 1.2M to 880. So far no side effects and feeling well overall. š¤š½ 39 yo male CALR type 1 for reference. Question: how long can I expect my numbers to decline at this dose?
had my first bloods taken since starting
hydrea
two weeks ago. All bloods in normal range and platelets down from 1.2M to 880. So far no side effects and feeling well overall. š¤š½ 39 yo male CALR type 1 for reference. Question: how long can I expect my numbers to decline at this dose?
dbus1417
in
MPN Voice
1 year ago
Gum lesions from Hydrea
I have developed gum lesions from
Hydrea
. They aren't white places, but bright red. My haematologist didn't have anything to offer me on what to do about it. It is also making my gums recede. My dentist didn't have any answers for what to do about it either.
I have developed gum lesions from
Hydrea
. They aren't white places, but bright red. My haematologist didn't have anything to offer me on what to do about it. It is also making my gums recede. My dentist didn't have any answers for what to do about it either.
dogsandhorses
in
MPN Voice
1 year ago
First time taking hydrea
Does anyone experience these symptoms when first going on
hydrea
and if so, do they eventually subside? Thanks.
Does anyone experience these symptoms when first going on
hydrea
and if so, do they eventually subside? Thanks.
Deya08
in
MPN Voice
1 year ago
Doctor wants me to start Hydrea
I think I want to see a MPN before making the decision to take the
Hydrea
, but the closest one is 3 hours away, that I can find, and who knows how long before I can get in. Thanks for listening
I think I want to see a MPN before making the decision to take the
Hydrea
, but the closest one is 3 hours away, that I can find, and who knows how long before I can get in. Thanks for listening
JT1622
in
MPN Voice
9 months ago
Starting judges today
Starting
hydrea
today. I also have asked for an abdominal ultrasound as I have had some discomfort on my left side for several weeks. It is not the spleen as a recent ultrasound of that was normal. To add insult to injury, my car caught on fire this week and is totally destroyed.
Starting
hydrea
today. I also have asked for an abdominal ultrasound as I have had some discomfort on my left side for several weeks. It is not the spleen as a recent ultrasound of that was normal. To add insult to injury, my car caught on fire this week and is totally destroyed.
Mtnlife
in
MPN Voice
1 year ago
MPN ET, Hydroxycarbamide & wrist pain
I know that
Hydrea
can cause these, too. Do people get wrist problems that have similar symptoms to Carpal Tunnel Syndrome? Are MPNs known to lead to Carpal Tunnel Syndrome? I'm just curious.
I know that
Hydrea
can cause these, too. Do people get wrist problems that have similar symptoms to Carpal Tunnel Syndrome? Are MPNs known to lead to Carpal Tunnel Syndrome? I'm just curious.
HoundSept2022
in
MPN Voice
1 year ago
Weight gain on Jakafi ?
Hi, I was diagnosed Jak2 gene last year April (PV) and didnāt tolerate
hydrea
nor was it having any effectā¦ Now progressed to 20mg Jakafi and a side effect (I was told) can be weight gainā¦ At first no gain but I did notice getting a more pronounced sweet tooth after a month on 20mg āŗļø.
Hi, I was diagnosed Jak2 gene last year April (PV) and didnāt tolerate
hydrea
nor was it having any effectā¦ Now progressed to 20mg Jakafi and a side effect (I was told) can be weight gainā¦ At first no gain but I did notice getting a more pronounced sweet tooth after a month on 20mg āŗļø.
Anouchka
in
MPN Voice
1 year ago
ET/Jak2 postive
My doctor did not act like it was a big deal and did not explain much other than to say I should start taking low dose
hydrea
. Being that it is a chemo pill, I do not want to take it unless I have to. He said he is okay with me taking aspirin for now and getting monthly blood checks.
My doctor did not act like it was a big deal and did not explain much other than to say I should start taking low dose
hydrea
. Being that it is a chemo pill, I do not want to take it unless I have to. He said he is okay with me taking aspirin for now and getting monthly blood checks.
Highplatelets
in
MPN Voice
1 year ago
Hair Loss on Hydrea
I too loss lots of hair while taking
Hydrea
, then Anagrelide, and finally Jakafi. After starting to an MPN Specialist almost 2 yrs ago & switching to Pegasys, my hair is coming back in. My hair dresser is amazed at how much regrowth Iāve had.
I too loss lots of hair while taking
Hydrea
, then Anagrelide, and finally Jakafi. After starting to an MPN Specialist almost 2 yrs ago & switching to Pegasys, my hair is coming back in. My hair dresser is amazed at how much regrowth Iāve had.
Golfersmom
in
MPN Voice
1 year ago
Hydrea and mouth sores
What do you find works best for treating mouth sores ? Thank you in advanceš
What do you find works best for treating mouth sores ? Thank you in advanceš
IrishHiker
in
MPN Voice
1 year ago
Anagrelide SCP
I have been on
Hydrea
for 2 years and I have been feeling nauseous every day so I have started Ansgrelide SCP 0.5mg has anyone tried this this is my fist day hope all are well
I have been on
Hydrea
for 2 years and I have been feeling nauseous every day so I have started Ansgrelide SCP 0.5mg has anyone tried this this is my fist day hope all are well
Windy51
in
MPN Voice
1 year ago
hydrea shortage in Ireland
Hi - just wondering if any Irish patients are having problems sourcing
hydrea
at the moment. There seems to be a shortage of it.
Hi - just wondering if any Irish patients are having problems sourcing
hydrea
at the moment. There seems to be a shortage of it.
Munster5
in
MPN Voice
1 year ago
ET-The mental aspect
She is generally against any treatment at this stage, especially with
Hydrea
, as she does not believe that controlling platelet counts has a huge impact on thrombosis and certainly none on progression. It could in fact increase chances for a more aggressive transformation.
She is generally against any treatment at this stage, especially with
Hydrea
, as she does not believe that controlling platelet counts has a huge impact on thrombosis and certainly none on progression. It could in fact increase chances for a more aggressive transformation.
Metronome
in
MPN Voice
1 year ago
Seeing an MPN Specialist tomorrow!
Going on 5 years with ET+CALR and currently taking aspirin and 2 pills of
Hydrea
daily AND 90mcg of Pegasys once a week. We are in a transitional period right now and I will eventually just be taking Pegasys and aspirin. Took my 4th dose of Pegasys yesterday.
Going on 5 years with ET+CALR and currently taking aspirin and 2 pills of
Hydrea
daily AND 90mcg of Pegasys once a week. We are in a transitional period right now and I will eventually just be taking Pegasys and aspirin. Took my 4th dose of Pegasys yesterday.
Zeppelin11
in
MPN Voice
1 year ago
LDH Levels
I'm going on three weeks with Pegasys (90mcg once per week) and still taking two pills of
Hydrea
as well as an aspirin per day. My platelets continue to go down and are at 780,000 as if yesterday. However my LDH level is at 359 which is concerning me.
I'm going on three weeks with Pegasys (90mcg once per week) and still taking two pills of
Hydrea
as well as an aspirin per day. My platelets continue to go down and are at 780,000 as if yesterday. However my LDH level is at 359 which is concerning me.
Zeppelin11
in
MPN Voice
1 year ago
Long Term Hydrea patients?
Hi, I'd like to hear from any long term
Hydrea
PV/ET patients out there? I'm 74. I was diagnosed about 7 years ago with Jak2 ET. Refused
Hydrea
and just stayed on daily aspirin. About 18 months ago my diagnosis was changed to PV.
Hi, I'd like to hear from any long term
Hydrea
PV/ET patients out there? I'm 74. I was diagnosed about 7 years ago with Jak2 ET. Refused
Hydrea
and just stayed on daily aspirin. About 18 months ago my diagnosis was changed to PV.
Jamesxyz
in
MPN Voice
2 years ago
Bomedemstat trials
Iām terrified of going back on
Hydrea
due to intolerable side effects and my very understanding MPN specialist nurse has been monitoring me. Sadly, my platelets are creeping up , lately to 845 and Iām now wakening during the night with tingling legs and palpitations .
Iām terrified of going back on
Hydrea
due to intolerable side effects and my very understanding MPN specialist nurse has been monitoring me. Sadly, my platelets are creeping up , lately to 845 and Iām now wakening during the night with tingling legs and palpitations .
myllo
in
MPN Voice
11 months ago
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