Seeing these high platelet counts makes me wonder if I was put on HU prematurely--2 years ago. I am 79, diagnosed via bone marrow test, ESJAK2 but my platelets have never been above 500. I wondering what the counts are on this site.
@kat260 if you have any autoimmune conditions, proceed with caution with interferons. It can make those worse. Patients who have suffered from that effect advise to start with a low dose and increase slowly. Some people may take both HU and Interferon because the HU usually reduces the platelets quickly. I take HU at a low dose and it has been sufficiently effective to reduce my ET symptoms. I cannot say I have any side effects so I don’t think the drug is something to be afraid of. People have been safely taking it for many years. On the other hand, people with MPNs experience different symptoms, severity and reactions to drugs. I don’t think there are always clear reasons why so ultimately you just have to try the drugs and see how you fare. There is some research that suggests JAK2 patients may be able to reduce mutation level with the treatment. If you want to hear from patients on interferon, there are quite a few on the Health Unlocked platform.
@eloise999 Thanks for the info. I'm happy to hear the HU treatment is successful for you with no side affects. Yes, I am wary about the autoimmune part. I have hives and have recently had a suspected drug reaction to the Omalizumab (Xolair) monthly injection that I receive as treatment. My dermatologist has also advised Interferon may induce psoriasis. I agree I will have to just try the drugs and see what happens as we are all different. When you say you take HU at a low dose, may I ask what that dose is? Thanks
@kat260 Hello, I am 60 years as well and diagnosed with Et Jak 2 in November 2025 and since then on HU. No sideeffects yet and the platelets have significantly dropped. However I am thinking about taking interferon instead because of the chance to influence the mutation itself . I am gonna have and appointment with an Mpn specialist soon who has recently proven that it will work for et similarly to pv even for older patients . I will keep you up in the loop about his recommendations particularly regarding the sideeffects.
@birgitr Hi. Glad to hear you have no side affects yet and your platelets have significantly lowered. That's good to know. I will be interested to hear what the MPN specialist has to say. Thanks for keeping me in the loop.
I was recently on Interferon (Besremi) for 5 months. I was anxious to try it mainly for the possibility of mutation reduction. However, it didn’t work for me due to the side effects. My lab results were wonderful …my numbers returned to normal,after one month on a low dose. But as time went on I had increasingly severe GI symptoms and depression with negative thinking. My hematologist and I agreed to stop the Besremi and go back on HU..I had been on HU for several years with minimal side effects, . That said, everyone responds differently and you may have a totally different experience. Best of luck
@eloise999 Thanks for the info. I'm happy to hear the HU treatment is successful for you with no side affects. Yes, I am wary about the autoimmune part. I have hives and have recently had a suspected drug reaction to the Omalizumab (Xolair) monthly injection that I receive as treatment. My dermatologist has also advised Interferon may induce psoriasis. I agree I will have to just try the drugs and see what happens as we are all different. When you say you take HU at a low dose, may I ask what that dose is? Thanks
Seeing these high platelet counts makes me wonder if I was put on HU prematurely--2 years ago. I am 79, diagnosed via bone marrow test, ESJAK2 but my platelets have never been above 500. I wondering what the counts are on this site.
@jodyjazz my highest was around 750,000. I had a number of symptoms at that level so I went on HU. I was 69. Your count seems on the low side. Did you have symptoms or blood clots?
Seeing these high platelet counts makes me wonder if I was put on HU prematurely--2 years ago. I am 79, diagnosed via bone marrow test, ESJAK2 but my platelets have never been above 500. I wondering what the counts are on this site.
@jodyjazz I've noticed most people on this site have started treatment earlier. I'm in Australia and was diagnosed with ET Jak2 in August 2025. Here is what my haematologist advised me. Starting treatment differs by country, Australia is more "conservative", starting around 1000, the US are more "aggressive" starting around 500. It's all about the risk factor and how it's determined, ie. stroke risk increasing from age 60 and then factoring in other contributors like high blood pressure and/or heart issues. I am 60, on medication for high blood pressure and am in the medium risk for heart disease. Both are being managed. I haven't had any previous blood clots. My platelets are at 920. Assuming it's standard everywhere but normal range in Australia is between 150-450. He also said the 100mg aspirin renders half of the platelets "helplesss" so my count is more like 460. I did not have a bone marrow test so not sure if that shows other information to factor in when to start treatment. I have blood tests every 8-12 weeks. I'm really on the cusp of starting treatment and was given the choice to start now or wait to see my blood results later this month.
I was recently on Interferon (Besremi) for 5 months. I was anxious to try it mainly for the possibility of mutation reduction. However, it didn’t work for me due to the side effects. My lab results were wonderful …my numbers returned to normal,after one month on a low dose. But as time went on I had increasingly severe GI symptoms and depression with negative thinking. My hematologist and I agreed to stop the Besremi and go back on HU..I had been on HU for several years with minimal side effects, . That said, everyone responds differently and you may have a totally different experience. Best of luck
@holbrop Sorry to hear it didn't work for you long term especially with such good results initially. Thanks for the info. I'm thinking I will probably give it a go and see what happens.
@birgitr Hi. Glad to hear you have no side affects yet and your platelets have significantly lowered. That's good to know. I will be interested to hear what the MPN specialist has to say. Thanks for keeping me in the loop.
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Seeing these high platelet counts makes me wonder if I was put on HU prematurely--2 years ago. I am 79, diagnosed via bone marrow test, ESJAK2 but my platelets have never been above 500. I wondering what the counts are on this site.
@eloise999 Thanks for the info. I'm happy to hear the HU treatment is successful for you with no side affects. Yes, I am wary about the autoimmune part. I have hives and have recently had a suspected drug reaction to the Omalizumab (Xolair) monthly injection that I receive as treatment. My dermatologist has also advised Interferon may induce psoriasis. I agree I will have to just try the drugs and see what happens as we are all different. When you say you take HU at a low dose, may I ask what that dose is? Thanks
@birgitr Hi. Glad to hear you have no side affects yet and your platelets have significantly lowered. That's good to know. I will be interested to hear what the MPN specialist has to say. Thanks for keeping me in the loop.
I was recently on Interferon (Besremi) for 5 months. I was anxious to try it mainly for the possibility of mutation reduction. However, it didn’t work for me due to the side effects. My lab results were wonderful …my numbers returned to normal,after one month on a low dose. But as time went on I had increasingly severe GI symptoms and depression with negative thinking. My hematologist and I agreed to stop the Besremi and go back on HU..I had been on HU for several years with minimal side effects, . That said, everyone responds differently and you may have a totally different experience. Best of luck
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2 Reactions@kat260 I take 500 mg/day.
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2 Reactions@jodyjazz my highest was around 750,000. I had a number of symptoms at that level so I went on HU. I was 69. Your count seems on the low side. Did you have symptoms or blood clots?
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1 Reaction@jodyjazz I've noticed most people on this site have started treatment earlier. I'm in Australia and was diagnosed with ET Jak2 in August 2025. Here is what my haematologist advised me. Starting treatment differs by country, Australia is more "conservative", starting around 1000, the US are more "aggressive" starting around 500. It's all about the risk factor and how it's determined, ie. stroke risk increasing from age 60 and then factoring in other contributors like high blood pressure and/or heart issues. I am 60, on medication for high blood pressure and am in the medium risk for heart disease. Both are being managed. I haven't had any previous blood clots. My platelets are at 920. Assuming it's standard everywhere but normal range in Australia is between 150-450. He also said the 100mg aspirin renders half of the platelets "helplesss" so my count is more like 460. I did not have a bone marrow test so not sure if that shows other information to factor in when to start treatment. I have blood tests every 8-12 weeks. I'm really on the cusp of starting treatment and was given the choice to start now or wait to see my blood results later this month.
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4 Reactions@eloise999 Ok, thanks.
@holbrop Sorry to hear it didn't work for you long term especially with such good results initially. Thanks for the info. I'm thinking I will probably give it a go and see what happens.
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1 Reaction@kat260 Hopefully the appointment will be arranged pretty soon, because he is the wellknown specialist in Germany. I ‚ll keep you updated, for sure 👍.
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