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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. So I decided to take daily 1 Hydrea (500mg), My counts are well controlled
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. So I decided to take daily 1 Hydrea (500mg), My counts are well controlled
Jamesxyz
in
MPN Voice
2 years ago
CAC Score of 477, what next?
Greetings, I always had borderline high cholesterol (190/200), In 2019 had a CT scan and was a bit shocked that it was 477 as I was very active with Crossfit..etc. That number, according to Dr. Google, is shockingly bad, and I stress every time I think about it. My cardiologist gave me a stress treadmill
Greetings, I always had borderline high cholesterol (190/200), In 2019 had a CT scan and was a bit shocked that it was 477 as I was very active with Crossfit..etc. That number, according to Dr. Google, is shockingly bad, and I stress every time I think about it. My cardiologist gave me a stress treadmill
SierraSix
in
British Heart Foundation
2 years ago
High Platelet count
Can anyone advise how to lower the platelet count and is Asprin advisable? What foods to avoid etc
Can anyone advise how to lower the platelet count and is Asprin advisable? What foods to avoid etc
Jaydie
in
MPN Voice
2 years ago
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thank you
thank you to every who supported me through my uncles bypass, valve and aneurysm surgery. you answered questions and gave me advice. He is finally home after 3 weeks, he ended up having a pacemaker also due to low heart rate after surgery. He’s had little falls, he had dizzy spells before but got bad
thank you to every who supported me through my uncles bypass, valve and aneurysm surgery. you answered questions and gave me advice. He is finally home after 3 weeks, he ended up having a pacemaker also due to low heart rate after surgery. He’s had little falls, he had dizzy spells before but got bad
Lydia_1
in
British Heart Foundation
2 years ago
raised potassium levels
I have just seen this post from FB for ET patients…. Anyone see an increase in their potassium level? Have ET Jak 2 positive for 9 years. Been on Hydrea 500 mg 3 times a week. The last 3 blood tests show my potassium levels creeping up above normal. No changes in my diet. I am on my third blood
I have just seen this post from FB for ET patients…. Anyone see an increase in their potassium level? Have ET Jak 2 positive for 9 years. Been on Hydrea 500 mg 3 times a week. The last 3 blood tests show my potassium levels creeping up above normal. No changes in my diet. I am on my third blood
Grendall
in
MPN Voice
2 years ago
myelofibrosis
well my et has progressed to mf,platelets normal ,wcc normal, hb slightly low spleen slightly enlarged, main symptom is fatigue. my score is low intermediate so just continue with aspirin and repeat bloods in 3 months.not sure how I feel about it all .
well my et has progressed to mf,platelets normal ,wcc normal, hb slightly low spleen slightly enlarged, main symptom is fatigue. my score is low intermediate so just continue with aspirin and repeat bloods in 3 months.not sure how I feel about it all .
glyndale
in
MPN Voice
2 years ago
Low VO2 Max - should I care?
I am 9 months post AVR surgery and remain on Low dose aspirin, bisoprolol and atorvastin. I have a smart watch and all my measures look good except my VO2 Max, which is consistently very low at 23. I am active and feel pretty fit, at target weight, so should I be concerned? Could this simply be a consequence
I am 9 months post AVR surgery and remain on Low dose aspirin, bisoprolol and atorvastin. I have a smart watch and all my measures look good except my VO2 Max, which is consistently very low at 23. I am active and feel pretty fit, at target weight, so should I be concerned? Could this simply be a consequence
Wizard_of_Oz
in
British Heart Foundation
2 years ago
ET and lumps?
hi, this is my first time posting and new to this site. I was diagnosed with ET in May 2020 after finding my platelets were high whilst pregnant with my second daughter. I was just put on aspirin daily until my platelets shot up to 1500 and stayed that high for a few week/a month in February/March of
hi, this is my first time posting and new to this site. I was diagnosed with ET in May 2020 after finding my platelets were high whilst pregnant with my second daughter. I was just put on aspirin daily until my platelets shot up to 1500 and stayed that high for a few week/a month in February/March of
Lena1992
in
MPN Voice
2 years ago
Am I at risk of having too much calcium in my blood?
diagnosed Sept. 21 now tapered to 2 mg. in the summer I was informed that I would require some dental treatment, possibly an implant. After speaking to my dentist about the risks involved, as I was taking Alandronic acid, which I have always disliked taking, I decided for better or worse (and especially
diagnosed Sept. 21 now tapered to 2 mg. in the summer I was informed that I would require some dental treatment, possibly an implant. After speaking to my dentist about the risks involved, as I was taking Alandronic acid, which I have always disliked taking, I decided for better or worse (and especially
Fetlar73
in
PMRGCAuk
2 years ago
Platelet Count Fluctuations with ET - what to expect, ways to lower them naturally?
Hi There, First post. Joined to club recently with a Jak2 / ET diagnosis. Took an elective men's health blood panel almost a year ago which identified platelets at 528. In September '22 I tested at 576, and in November '22, tested at 645. Had a bone marrow biopsy this fall and the diagnosis.
Hi There, First post. Joined to club recently with a Jak2 / ET diagnosis. Took an elective men's health blood panel almost a year ago which identified platelets at 528. In September '22 I tested at 576, and in November '22, tested at 645. Had a bone marrow biopsy this fall and the diagnosis.
Carini
in
MPN Voice
2 years ago
Enquiry ref Asprin
Background ,: Got an NHS thyroid blood test on 6th Dec so stopped Armour .Also Im getting psych consultant help ( private obv) with extreme anxiety so stopping Armour as experiment with him too. Currently 7 days without Armour . After about 3 days I felt unbelievably ill with aches and pains with
Background ,: Got an NHS thyroid blood test on 6th Dec so stopped Armour .Also Im getting psych consultant help ( private obv) with extreme anxiety so stopping Armour as experiment with him too. Currently 7 days without Armour . After about 3 days I felt unbelievably ill with aches and pains with
Tythrop
in
Thyroid UK
2 years ago
Did HU reduce your headaches?
There may be a post about this, but I could not find. I’m just beginning HU, 500 mg 1 a day. I have ET JAK2 +. Until this point I’ve been on aspirin only. Platelets continue to rise, so MPN specialist suggests I begin HU. I’m hopeful this protocol will help reduce amount of headaches and fatigue
There may be a post about this, but I could not find. I’m just beginning HU, 500 mg 1 a day. I have ET JAK2 +. Until this point I’ve been on aspirin only. Platelets continue to rise, so MPN specialist suggests I begin HU. I’m hopeful this protocol will help reduce amount of headaches and fatigue
EANgardengirl
in
MPN Voice
2 years ago
Has anyone else stopped taking a daily statin?
Hi everyone, I'm wondering if I'm alone in deciding that I no longer wish to continue taking statins? I'm into my ninth week of recovery following Bypass Surgery. I'm extremely aware that compared to a lot of people who have found themselves in my situation I'm blessed. The only fly in the ointment
Hi everyone, I'm wondering if I'm alone in deciding that I no longer wish to continue taking statins? I'm into my ninth week of recovery following Bypass Surgery. I'm extremely aware that compared to a lot of people who have found themselves in my situation I'm blessed. The only fly in the ointment
Hidden
in
British Heart Foundation
2 years ago
Lansoprazole and Omeprazole
Hi, I’m wondering if anyone else has has similar experiences with either Lansoprazole and Omeprazole. I was initially prescribed 30 mg daily of Lansoprazole because of having to take daily aspirin which can cause problems because of excess acid production. Even since I started taking Lansoprazole after
Hi, I’m wondering if anyone else has has similar experiences with either Lansoprazole and Omeprazole. I was initially prescribed 30 mg daily of Lansoprazole because of having to take daily aspirin which can cause problems because of excess acid production. Even since I started taking Lansoprazole after
Wilko110150
in
British Heart Foundation
2 years ago
Hydroxy Blood Numbers Experiences
Hi, I was diagnosed with PV in February this year. Started venesections and aspirin straight away. I have just started on HU and wondered if anyone can share their experiences of what to expect. I had bloods checked this week after being on HU for just over 3 weeks. My HCT is now 42, Hb 12.8
Hi, I was diagnosed with PV in February this year. Started venesections and aspirin straight away. I have just started on HU and wondered if anyone can share their experiences of what to expect. I had bloods checked this week after being on HU for just over 3 weeks. My HCT is now 42, Hb 12.8
Hocus58
in
MPN Voice
2 years ago
7dp5dt spotting, help !!
I'm 8dp5dt I started spotting yesterday, brwonich , pink and some tiny red discharge, I'm so worried, I did a progesterone blood test and it cames back 70 (it was 93 in 3dp5dt).I don't know what to do ? Is it normal to bleed with this level of progesterone? I'm also taking baby aspirin and prednisolone
I'm 8dp5dt I started spotting yesterday, brwonich , pink and some tiny red discharge, I'm so worried, I did a progesterone blood test and it cames back 70 (it was 93 in 3dp5dt).I don't know what to do ? Is it normal to bleed with this level of progesterone? I'm also taking baby aspirin and prednisolone
Titawine
in
Fertility Network UK
2 years ago
Spleen pain
I am waiting for an appointment for a scan of my spleen as I am getting a lot of pain from it, more so since my iron infusion. It seemed to settle down for a few days but I’ve got up this morning and the pain under my left ribs is quite significant, in fact it seems to go right round to my back. I started
I am waiting for an appointment for a scan of my spleen as I am getting a lot of pain from it, more so since my iron infusion. It seemed to settle down for a few days but I’ve got up this morning and the pain under my left ribs is quite significant, in fact it seems to go right round to my back. I started
lizzziep
in
MPN Voice
2 years ago
Living Nightmare! (At least I'm living!)
Just over a month ago I had a MI. The Heart Attack came on very suddenly, all the classic symptoms, band around chest, numb left arm, pain in my jaw. I was sitting down drinking a cup of tea at the time, so, finished my brew, popped aspirin and drove myself to hospital. - Why didn't I call 999? A week
Just over a month ago I had a MI. The Heart Attack came on very suddenly, all the classic symptoms, band around chest, numb left arm, pain in my jaw. I was sitting down drinking a cup of tea at the time, so, finished my brew, popped aspirin and drove myself to hospital. - Why didn't I call 999? A week
Gary221
in
British Heart Foundation
2 years ago
Numb leg
I was diagnosed with ET last May, I take an aspirin a day and get a telephone consultation from haematology every six months, my next one due in Dec, for the past few weeks one of my legs is feeling quite numb, with tingling, it is quite uncomfortable and wakes me up through the night, I hav found my
I was diagnosed with ET last May, I take an aspirin a day and get a telephone consultation from haematology every six months, my next one due in Dec, for the past few weeks one of my legs is feeling quite numb, with tingling, it is quite uncomfortable and wakes me up through the night, I hav found my
doglover49
in
MPN Voice
2 years ago
My Story
Hello everyone, I have been reading random posts on MPN voice but have not posted yet. So, this is my first post. Here goes. I always go for regular checkups with my Primary doctor. Starting in early 2021 my doctor told me that he was a little concerned about my platelet count. For about 9 months
Hello everyone, I have been reading random posts on MPN voice but have not posted yet. So, this is my first post. Here goes. I always go for regular checkups with my Primary doctor. Starting in early 2021 my doctor told me that he was a little concerned about my platelet count. For about 9 months
Director1157
in
MPN Voice
2 years ago
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