Wondering if Taylor has tried taking a daily antihistamine? I take generic loratadine (the active ingredient in Claritin) every day. ET's weird platelets can set off our immune reaction, causing itching and stuffiness. Loratadine helps me a lot.
Our daily low-dose aspirin reduces clotting activity -- for those of us with too many platelets, that's a good thing! But reduced clotting means even a teensy paper cut will bleed (always pack Band Aids!). And bruises are just unclotted bleeding under the skin.
Maybe instead of thinking bruises are scary, you could think of them as proof the aspirin and Plavix are working well, maintaining the fluidity of his blood?
@janemc he does take Zyrtec daily, a low dose aspirin and Plavix ( clopidogrel) daily. Thank you for the last paragraph, that's an excellent point!! We do also keep lots of bandaids and bandages handy!
My husband has Jak2 and was a poor responder to Hydroxyurea and Jakifi. His hematologist suggested bloodletting but that costs too much for our income. We are hitting brick walls with every turn. He was diagnosed in 2020 after having a heart attack. We have insurance with my employer but copays are unreal and he hasn't been able to work since his heart attack. Just looking for encouragement.
@dwilson072516
Hi, I also have the same diagnosis and through my doctor at Stanford give blood monthly which helps my platelets and red and white numbers go down. This is called rather an ugly word to me; blood dumping. I do this monthly. This is no cost to me. I sure hope you will injure about this. It is helping me along with the daily 81mg of aspirin and 1000mg of hydrea. Denise
@dwilson072516
Hi, I also have the same diagnosis and through my doctor at Stanford give blood monthly which helps my platelets and red and white numbers go down. This is called rather an ugly word to me; blood dumping. I do this monthly. This is no cost to me. I sure hope you will injure about this. It is helping me along with the daily 81mg of aspirin and 1000mg of hydrea. Denise
@djlom15 we are actively looking for a way my husband can "dump" but it's rather expensive through the medical facility. He is currently just on the blood thinners, he has not responded well to specific medications. Hydroxyurea put him in the hospital with sepsis and Jakifi caused him to forget every day things and he became aggressive and moody. So we take it a day at a time now and wait to see if something better comes along.
@kat260 interestingly I haven’t done a bone marrow biopsy yet. This MPN specialist who recommended peg has strongly advised me to do one, however, my normal hematologist is OK with a clinical diagnosis. Honestly, at the moment, I am absolutely thankful because it would impact my mood significantly. So I’m happy that I’m on peg even without a biopsy. Needless to say I’m not sure if my insurance is OK with that as well, we will see. Additionally, I am aware that the most common approach is to do a biopsy. By the way my vaf is 26.
@birgitr If you do need to do a biopsy demand that it be done in interventional radiology with sedation. My oncologist tried to talk me into no sedation but NO WAY would I agree to that. It was not a bad experience at all.
@birgitr Excuse my ignorance, but what is peg? I have ET with Jak2 mutation but hemo did not think bone biopsy was necessary. My platelets were in 600 range when put on hydroxyurea so I dont understand someone being at a 1000 with no treatment to reduce platelets.
@princess86 the medication is named Pegasys, a specific kind of interferon. Similar to HU it can reduce platelets and additionally it can in same cases stabilize the Klon or in best cases reduce the vaf. The substance itself is a more biological substance.
@birgitr If you do need to do a biopsy demand that it be done in interventional radiology with sedation. My oncologist tried to talk me into no sedation but NO WAY would I agree to that. It was not a bad experience at all.
@kat260 Hello my dear, honestly I am truly happy that you have been able to schedule this appointment pretty soon. Regardless of the outcome it will be so much relieving for you. To get professional advice is key and the fundament for an informed decision 💪👍👯♀️.
@kat260 Hello my dear, honestly I am truly happy that you have been able to schedule this appointment pretty soon. Regardless of the outcome it will be so much relieving for you. To get professional advice is key and the fundament for an informed decision 💪👍👯♀️.
@birgitr I was very grateful she squeezed me in as she is booked out for the next 6 weeks. It is definitely a relief. You kinda motivated me to keep looking for someone and then I was encouraged by your result, so thank you 🙏
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@janemc he does take Zyrtec daily, a low dose aspirin and Plavix ( clopidogrel) daily. Thank you for the last paragraph, that's an excellent point!! We do also keep lots of bandaids and bandages handy!
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1 Reaction@dwilson072516
Hi, I also have the same diagnosis and through my doctor at Stanford give blood monthly which helps my platelets and red and white numbers go down. This is called rather an ugly word to me; blood dumping. I do this monthly. This is no cost to me. I sure hope you will injure about this. It is helping me along with the daily 81mg of aspirin and 1000mg of hydrea. Denise
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2 Reactions@djlom15 we are actively looking for a way my husband can "dump" but it's rather expensive through the medical facility. He is currently just on the blood thinners, he has not responded well to specific medications. Hydroxyurea put him in the hospital with sepsis and Jakifi caused him to forget every day things and he became aggressive and moody. So we take it a day at a time now and wait to see if something better comes along.
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1 Reaction@birgitr If you do need to do a biopsy demand that it be done in interventional radiology with sedation. My oncologist tried to talk me into no sedation but NO WAY would I agree to that. It was not a bad experience at all.
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2 Reactions@princess86 the medication is named Pegasys, a specific kind of interferon. Similar to HU it can reduce platelets and additionally it can in same cases stabilize the Klon or in best cases reduce the vaf. The substance itself is a more biological substance.
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1 Reaction@scienceteacher thank you so much for your precious advice when a biopsy is recommended I will follow your advice definitely 👍
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1 Reaction@birgitr My specialist appointment is set for 25th May. I'll let you know how it goes🤞
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1 Reaction@kat260 Hello my dear, honestly I am truly happy that you have been able to schedule this appointment pretty soon. Regardless of the outcome it will be so much relieving for you. To get professional advice is key and the fundament for an informed decision 💪👍👯♀️.
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4 Reactions@birgitr I was very grateful she squeezed me in as she is booked out for the next 6 weeks. It is definitely a relief. You kinda motivated me to keep looking for someone and then I was encouraged by your result, so thank you 🙏
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