Good morning, Pam. If I remember correctly, you’ve had PV for a number of years. This blood condition can progress over time and those changes can present different symptoms. Have you mentioned these worsening bone pains to your hematologist?
Good morning, Pam. If I remember correctly, you’ve had PV for a number of years. This blood condition can progress over time and those changes can present different symptoms. Have you mentioned these worsening bone pains to your hematologist?
Wow, that’s not very helpful! That’s the old “Take 2 aspirin and call me in the morning” line…
A more natural option which can help reduce inflammation and reduce pain is bioavailable curcumin (from turmeric), such as Qunol brand. It’s always best to get approval from your physician before taking supplements in case there are any drug interactions with other meds.
This is a good article for people with PV on what supplements to take and what to avoid… https://www.mympnteam.com/resources/supplements-for-polycythemia-vera-to-take-and-to-avoid
If I have any body aches, I drink Golden Milk which is a nice soothing blend of turmeric, black pepper, ginger and honey.
I also have a supply of Republic of Tea Turmeric tea blend. That’s another product that reduces any aches for me without having to resort to Advil or Tylenol.
This article from Healthline.com talks about Golden Tea and provides the recipe at the end. It’s similar to my recipe. But I make a dry blend in a larger jar to have on hand then all I need to do is add a couple teaspoons to my cup and pour in warm milk. https://www.healthline.com/nutrition/golden-milk-turmeric
Some people also have success using CBD oil or gummies so you could check with a health food or CBD store.
Again, check with your doctor before starting any supplements but these are some ideas beyond taking Tylenol so frequently.
When’s the last time your doctor re-evaluated your condition?
Wow, that’s not very helpful! That’s the old “Take 2 aspirin and call me in the morning” line…
A more natural option which can help reduce inflammation and reduce pain is bioavailable curcumin (from turmeric), such as Qunol brand. It’s always best to get approval from your physician before taking supplements in case there are any drug interactions with other meds.
This is a good article for people with PV on what supplements to take and what to avoid… https://www.mympnteam.com/resources/supplements-for-polycythemia-vera-to-take-and-to-avoid
If I have any body aches, I drink Golden Milk which is a nice soothing blend of turmeric, black pepper, ginger and honey.
I also have a supply of Republic of Tea Turmeric tea blend. That’s another product that reduces any aches for me without having to resort to Advil or Tylenol.
This article from Healthline.com talks about Golden Tea and provides the recipe at the end. It’s similar to my recipe. But I make a dry blend in a larger jar to have on hand then all I need to do is add a couple teaspoons to my cup and pour in warm milk. https://www.healthline.com/nutrition/golden-milk-turmeric
Some people also have success using CBD oil or gummies so you could check with a health food or CBD store.
Again, check with your doctor before starting any supplements but these are some ideas beyond taking Tylenol so frequently.
When’s the last time your doctor re-evaluated your condition?
Good morning, Pam. If I remember correctly, you’ve had PV for a number of years. This blood condition can progress over time and those changes can present different symptoms. Have you mentioned these worsening bone pains to your hematologist?
Ok....I have polycethemia...finally am being tested PLATELET RICH AGGREGATION STUDIES (R89.9 and R79.1) I've been told Mayo is involved with these tests. Do you think I could have a telehealth? I had to jump up and down to get this! I have to go back to be tested.
Ok....I have polycethemia...finally am being tested PLATELET RICH AGGREGATION STUDIES (R89.9 and R79.1) I've been told Mayo is involved with these tests. Do you think I could have a telehealth? I had to jump up and down to get this! I have to go back to be tested.
Hi @etb2 I’m having a little trouble understanding what you mean. Can you tell me how Mayo Clinic is involved in your tests? Did you recently have platelet testing done at a local lab and they were forwarded to Mayo Clinic for further testing?
Ok from what I’m understanding is that you’ve been diagnosed with polycythemia vera. This is a condition where your bone marrow makes too many red blood cells. One of the more serious side effects would be the potential for blood clots.
It sounds as though your doctor may have followed up with a Prothrombin Time test in order to check your risk level for developing blood clots. From what I’m understanding, your blood took twice as long to clot than expected. Your doctor may wish to do testing to make sure your bone marrow is able to produce healthy blood cells.
When you had your PV diagnosis, did your doctor determine the underlying cause such as a mutation in the JAK2 gene?
I’m still trying to understand what you mean by having a Tele-health with Mayo Clinic in relation to your blood test results. Did you see the clinic listed on the test results? Quite often some complex blood work is sent to Mayo from a local hosptial for testing because Mayo has more sophisticated testing equipment. If that’s the case, then there wouldn’t be any way for you to tele-visit with a lab tech at Mayo.
Are you being treated locally at home by a hematologist oncologist? Did you want a second opinion from Mayo Clinic?
Jak2 is negative...they keep telling me it's from smoking but I don't fit the profile and a pulmonologist told me years ago that "they have not yet found the cause of ur polycethemia." I've had lots of opinions but when I heard they got Mayo involved, I just thought I would ask, that's all.
Jak2 is negative...they keep telling me it's from smoking but I don't fit the profile and a pulmonologist told me years ago that "they have not yet found the cause of ur polycethemia." I've had lots of opinions but when I heard they got Mayo involved, I just thought I would ask, that's all.
I think if Mayo was involved, it may have been as I mentioned, that some tests are sent to Mayo because they have the ability to preform more complicated testing beyond what some local labs are able to do.
If there is no mutation causing the excess production of red blood cells then doctors look to potential other causes. Any condition which reduces the amount of oxygen available in the cells can cause your body to call for the production of more red blood cells (they carry oxygen) to supply more oxygen to the body. Conditions such as:
Congenital heart disease in adults,
COPD (chronic obstructive pulmonary disease) — the blanket term for a group of diseases that block airflow from the lungs — including emphysema.
Heart failure
Living at high altitudes.
Pulmonary fibrosis — a disease that happens when lung tissue becomes damaged and scarred.
Sleep apnea — a condition in which breathing stops and starts many times during sleep.
Nicotine dependence (smoking)
So your doctor may be on the right track with the consideration that your excess blood production is from smoking.
Have you talked with your doctor about your slow clotting time? Are they treating your PV with phlebotomies?
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Good morning, Pam. If I remember correctly, you’ve had PV for a number of years. This blood condition can progress over time and those changes can present different symptoms. Have you mentioned these worsening bone pains to your hematologist?
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1 ReactionYes he told me to take Tylenol.
Not very helpful!
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Hug
4 ReactionsWow, that’s not very helpful! That’s the old “Take 2 aspirin and call me in the morning” line…
A more natural option which can help reduce inflammation and reduce pain is bioavailable curcumin (from turmeric), such as Qunol brand. It’s always best to get approval from your physician before taking supplements in case there are any drug interactions with other meds.
This is a good article for people with PV on what supplements to take and what to avoid…
https://www.mympnteam.com/resources/supplements-for-polycythemia-vera-to-take-and-to-avoid
If I have any body aches, I drink Golden Milk which is a nice soothing blend of turmeric, black pepper, ginger and honey.
I also have a supply of Republic of Tea Turmeric tea blend. That’s another product that reduces any aches for me without having to resort to Advil or Tylenol.
This article from Healthline.com talks about Golden Tea and provides the recipe at the end. It’s similar to my recipe. But I make a dry blend in a larger jar to have on hand then all I need to do is add a couple teaspoons to my cup and pour in warm milk.
https://www.healthline.com/nutrition/golden-milk-turmeric
Some people also have success using CBD oil or gummies so you could check with a health food or CBD store.
Again, check with your doctor before starting any supplements but these are some ideas beyond taking Tylenol so frequently.
When’s the last time your doctor re-evaluated your condition?
Thank you 😘
If re-evaluation you mean a BMB the answer is never.
Ok....I have polycethemia...finally am being tested PLATELET RICH AGGREGATION STUDIES (R89.9 and R79.1) I've been told Mayo is involved with these tests. Do you think I could have a telehealth? I had to jump up and down to get this! I have to go back to be tested.
Hi @etb2 I’m having a little trouble understanding what you mean. Can you tell me how Mayo Clinic is involved in your tests? Did you recently have platelet testing done at a local lab and they were forwarded to Mayo Clinic for further testing?
-
Like -
Helpful -
Hug
1 ReactionI don't know any more than what I've said...I have polycethemia but bleeding time test was twice the highest limit.
Ok from what I’m understanding is that you’ve been diagnosed with polycythemia vera. This is a condition where your bone marrow makes too many red blood cells. One of the more serious side effects would be the potential for blood clots.
It sounds as though your doctor may have followed up with a Prothrombin Time test in order to check your risk level for developing blood clots. From what I’m understanding, your blood took twice as long to clot than expected. Your doctor may wish to do testing to make sure your bone marrow is able to produce healthy blood cells.
When you had your PV diagnosis, did your doctor determine the underlying cause such as a mutation in the JAK2 gene?
I’m still trying to understand what you mean by having a Tele-health with Mayo Clinic in relation to your blood test results. Did you see the clinic listed on the test results? Quite often some complex blood work is sent to Mayo from a local hosptial for testing because Mayo has more sophisticated testing equipment. If that’s the case, then there wouldn’t be any way for you to tele-visit with a lab tech at Mayo.
Are you being treated locally at home by a hematologist oncologist? Did you want a second opinion from Mayo Clinic?
-
Like -
Helpful -
Hug
1 ReactionJak2 is negative...they keep telling me it's from smoking but I don't fit the profile and a pulmonologist told me years ago that "they have not yet found the cause of ur polycethemia." I've had lots of opinions but when I heard they got Mayo involved, I just thought I would ask, that's all.
I think if Mayo was involved, it may have been as I mentioned, that some tests are sent to Mayo because they have the ability to preform more complicated testing beyond what some local labs are able to do.
If there is no mutation causing the excess production of red blood cells then doctors look to potential other causes. Any condition which reduces the amount of oxygen available in the cells can cause your body to call for the production of more red blood cells (they carry oxygen) to supply more oxygen to the body. Conditions such as:
Congenital heart disease in adults,
COPD (chronic obstructive pulmonary disease) — the blanket term for a group of diseases that block airflow from the lungs — including emphysema.
Heart failure
Living at high altitudes.
Pulmonary fibrosis — a disease that happens when lung tissue becomes damaged and scarred.
Sleep apnea — a condition in which breathing stops and starts many times during sleep.
Nicotine dependence (smoking)
So your doctor may be on the right track with the consideration that your excess blood production is from smoking.
Have you talked with your doctor about your slow clotting time? Are they treating your PV with phlebotomies?