Besremi may not be a normal ET med, 2 docs (both mpn specialists at research institutions) have suggested it will be my next course of action. HU worked for a few years, now on Jakafi. Sometimes need to dig deep in the toolbox.
@drbart86
My hematologist gave me the choice of HU or Besremi and after we discussed it we agreed I should go for the Besremi.
I have been on it for almost 9 months, still at the 'starter' dose of 100mcg. My blood tests are 100% normal and I have minimal side effects (dry mouth, occasional fatigue a day or two after my injection and some sleeplessness).
Anybody been on a clinical trial with Bomedemstat? If so any feedback. They are staring Phase 3 trials, so must be at least promising to get to this point.
May I ask how old you were when you were diagnosed? Did you have a +JAX2 mutation. Any side affects with HU? I'm new to all of this and am gathering info. Thank you in advance.
@colleenyoung
Yes, I just got diagnosed with +jax2 and doctor wants me to take HU and I am freaked out by using gloves to touch the pill to swallow it ! Sounds very toxic! What do you think?
Hi @dragonflylynda. For clarification, you actually have PV (polycythemia vera) caused by a defect in the JAK2 gene. There isn’t a condition called jax2.
While HU is toxic, so are thousands of other medications we take on a daily basis. There’s some caution suggested for handling this medication in case there is any of the powder on the outside of the capsule or tablet so there’s no contamination of surfaces or anyone else being exposed to the drug.
You don’t need to wear gloves but you’re encouraged to not hold this in your hand. Often people take the medication by putting the pill in little plastic dosage cup or even a little Dixie bathroom cup and tip it into their mouths without touching with their hands.
You can swish your mouth first with water, then tip the pill in, swallow with more water. You may want to follow with a swishing of water in your mouth.
If you do touch the pill, simply wash your hands well. Many people take the pill with water, milk, or follow with applesauce.
Since you’re new to the PV diagnosis, I’m going to post a reply I wrote just a couple hours ago to another new member @lindakay55 who was recently diagnosed with PV. Here is the reply…read through it because there’s a link to an informational page on Polycythemia Vera so you have a better understanding of this blood condition: https://connect.mayoclinic.org/comment/1464122/
The reply is one of many in the discussion for newly diagnosed people with PV that you might want to read through; Here is that discussion
Polycythemia Vera: Just diagnosed. https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
Millions of people all over the US and the world take HU for their PV. It is a first line treatment for PV and can be quite helpful in keeping the condition under control. I hope you’ll relax a little and trust the process. These medications can work to keep you healthy and enjoying life.
How were you diagnosed with PV? Were you having symptoms or was this found through routine blood work?
@colleenyoung
Yes, I just got diagnosed with +jax2 and doctor wants me to take HU and I am freaked out by using gloves to touch the pill to swallow it ! Sounds very toxic! What do you think?
@dragonflylynda I shake my 2 capsules into jar top, I take a sip of water before, throw caps into my mouth, and drink 8-10 oz of water......and take a few spoonfuls of yogurt......It's been 5+ years, no problem.......I think if you were a nurse/pharmacist handling these caps you might need gloves.....I take both at once, and don't let them sit on my tongue, down the hatch with lots of water.......scarier than it sounds......
Hi @dragonflylynda. For clarification, you actually have PV (polycythemia vera) caused by a defect in the JAK2 gene. There isn’t a condition called jax2.
While HU is toxic, so are thousands of other medications we take on a daily basis. There’s some caution suggested for handling this medication in case there is any of the powder on the outside of the capsule or tablet so there’s no contamination of surfaces or anyone else being exposed to the drug.
You don’t need to wear gloves but you’re encouraged to not hold this in your hand. Often people take the medication by putting the pill in little plastic dosage cup or even a little Dixie bathroom cup and tip it into their mouths without touching with their hands.
You can swish your mouth first with water, then tip the pill in, swallow with more water. You may want to follow with a swishing of water in your mouth.
If you do touch the pill, simply wash your hands well. Many people take the pill with water, milk, or follow with applesauce.
Since you’re new to the PV diagnosis, I’m going to post a reply I wrote just a couple hours ago to another new member @lindakay55 who was recently diagnosed with PV. Here is the reply…read through it because there’s a link to an informational page on Polycythemia Vera so you have a better understanding of this blood condition: https://connect.mayoclinic.org/comment/1464122/
The reply is one of many in the discussion for newly diagnosed people with PV that you might want to read through; Here is that discussion
Polycythemia Vera: Just diagnosed. https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
Millions of people all over the US and the world take HU for their PV. It is a first line treatment for PV and can be quite helpful in keeping the condition under control. I hope you’ll relax a little and trust the process. These medications can work to keep you healthy and enjoying life.
How were you diagnosed with PV? Were you having symptoms or was this found through routine blood work?
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@drbart86
My hematologist gave me the choice of HU or Besremi and after we discussed it we agreed I should go for the Besremi.
I have been on it for almost 9 months, still at the 'starter' dose of 100mcg. My blood tests are 100% normal and I have minimal side effects (dry mouth, occasional fatigue a day or two after my injection and some sleeplessness).
I am very grateful it is available to me.
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3 Reactions@jeanette1954, welcome. Do you have essential thrombocythemia? Are you on treatment?
Anybody been on a clinical trial with Bomedemstat? If so any feedback. They are staring Phase 3 trials, so must be at least promising to get to this point.
Hi Colleen. I was diagnosed with Polycytemia vera. Currently being treated with hydroxyurea and aspirin since October .
@panamsandy I have +jax2 and really scared to take the pill HU , why do you have to be careful handling the pills? Sounds very toxic!
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1 Reaction@colleenyoung
Yes, I just got diagnosed with +jax2 and doctor wants me to take HU and I am freaked out by using gloves to touch the pill to swallow it ! Sounds very toxic! What do you think?
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Like -
Helpful -
Hug
1 ReactionHi @dragonflylynda. For clarification, you actually have PV (polycythemia vera) caused by a defect in the JAK2 gene. There isn’t a condition called jax2.
While HU is toxic, so are thousands of other medications we take on a daily basis. There’s some caution suggested for handling this medication in case there is any of the powder on the outside of the capsule or tablet so there’s no contamination of surfaces or anyone else being exposed to the drug.
You don’t need to wear gloves but you’re encouraged to not hold this in your hand. Often people take the medication by putting the pill in little plastic dosage cup or even a little Dixie bathroom cup and tip it into their mouths without touching with their hands.
You can swish your mouth first with water, then tip the pill in, swallow with more water. You may want to follow with a swishing of water in your mouth.
If you do touch the pill, simply wash your hands well. Many people take the pill with water, milk, or follow with applesauce.
Since you’re new to the PV diagnosis, I’m going to post a reply I wrote just a couple hours ago to another new member @lindakay55 who was recently diagnosed with PV. Here is the reply…read through it because there’s a link to an informational page on Polycythemia Vera so you have a better understanding of this blood condition:
https://connect.mayoclinic.org/comment/1464122/
The reply is one of many in the discussion for newly diagnosed people with PV that you might want to read through; Here is that discussion
Polycythemia Vera: Just diagnosed. https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
Millions of people all over the US and the world take HU for their PV. It is a first line treatment for PV and can be quite helpful in keeping the condition under control. I hope you’ll relax a little and trust the process. These medications can work to keep you healthy and enjoying life.
How were you diagnosed with PV? Were you having symptoms or was this found through routine blood work?
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Like -
Helpful -
Hug
4 Reactions@dragonflylynda I shake my 2 capsules into jar top, I take a sip of water before, throw caps into my mouth, and drink 8-10 oz of water......and take a few spoonfuls of yogurt......It's been 5+ years, no problem.......I think if you were a nurse/pharmacist handling these caps you might need gloves.....I take both at once, and don't let them sit on my tongue, down the hatch with lots of water.......scarier than it sounds......
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Helpful -
Hug
1 Reaction@loribmt
No I have essential Thrombocytosis jak2+