Anyone using Dupixent for Hypereosinophilic syndrome (HES)?

Posted by jkupratis @jkupratis, May 13 9:22am

Is anyone using Dupixent for HES? Anyone having any side effects of using Dupixent?
I don’t have any symptoms with my HES, however, my doctor is suggesting starting Dupixent.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

There are several members using Dupixent for conditons such an asthma which can be brought on by eosinophil reaction. While it’s not the same condition you have, these members are sharing their experiences with the medication. Perhaps it will be helpful to read what they have to say about it.

Here are a couple of links for you:
Anyone using Dupixent for asthma/allergy treatment? https://connect.mayoclinic.org/discussion/asthma-and-dupixent/

~~~~~~
Is anyone using Dupixent for COPD?
https://connect.mayoclinic.org/discussion/is-anyone-using-dupixent/
~~~
Dupixent for polyps?
https://connect.mayoclinic.org/discussion/dupixant-for-polyps/
There are several other conversations with the mention of Dupixent as well. I found quite a few by typing in Dupixent in the search bar at the top. You’ll see a reference to all the discussions.

What are your reservations for taking the drug?

REPLY
@loribmt

There are several members using Dupixent for conditons such an asthma which can be brought on by eosinophil reaction. While it’s not the same condition you have, these members are sharing their experiences with the medication. Perhaps it will be helpful to read what they have to say about it.

Here are a couple of links for you:
Anyone using Dupixent for asthma/allergy treatment? https://connect.mayoclinic.org/discussion/asthma-and-dupixent/

~~~~~~
Is anyone using Dupixent for COPD?
https://connect.mayoclinic.org/discussion/is-anyone-using-dupixent/
~~~
Dupixent for polyps?
https://connect.mayoclinic.org/discussion/dupixant-for-polyps/
There are several other conversations with the mention of Dupixent as well. I found quite a few by typing in Dupixent in the search bar at the top. You’ll see a reference to all the discussions.

What are your reservations for taking the drug?

Jump to this post

Thank you for sending those comments to me Lori. I have been told I am a rare case. My Eosinophils are very high and have been for at least 7 years. However, I have no symptoms. That's a blessing! I'm told that HES may attack a good organ, so I am scanned annually. The recommendation for Dupixent was presented to me this year and it's a big decision. With no HES symptoms it's hard to say 'yes' to injecting a drug once a week. Therefore, trying to obtain as much information as possible.

REPLY
@jkupratis

Thank you for sending those comments to me Lori. I have been told I am a rare case. My Eosinophils are very high and have been for at least 7 years. However, I have no symptoms. That's a blessing! I'm told that HES may attack a good organ, so I am scanned annually. The recommendation for Dupixent was presented to me this year and it's a big decision. With no HES symptoms it's hard to say 'yes' to injecting a drug once a week. Therefore, trying to obtain as much information as possible.

Jump to this post

I can understand your hesitation taking a medication when you’re not having any symptoms. That’s a tough decision. But if you do have a condition going on in the background that is silently causing issues, it’s important to nip it in the bud. Similar to high blood pressure meds…no symptoms but underlying potential damage.

I haven’t had any experience with this Dupixent (dupilumab) but I have had infusions of another monoclonal antibody, rituximab. I wasn’t too keen on starting that one either but it worked incredibly well for the condition I had developed. My condition wasn’t subtle however, so that was incentive to start. ☺️ In spite of the potential list of side effects I had no issues and the infusions worked. Once the specific area of my immune system was quieted, the condition disappeared.
This may be the aim of your doctor, to get the eosinophils quieted and perhaps eventually you may no longer need the meds.

Hopefully you’ll be able to get some positive feedback from other members taking the drug and it will help you make the decision to move forward with the medication. I can’t give advice but I have a good ear to listen and strong shoulders to support…☺️ so please let me know what you decide to do and how it works out for you!

REPLY
@loribmt

I can understand your hesitation taking a medication when you’re not having any symptoms. That’s a tough decision. But if you do have a condition going on in the background that is silently causing issues, it’s important to nip it in the bud. Similar to high blood pressure meds…no symptoms but underlying potential damage.

I haven’t had any experience with this Dupixent (dupilumab) but I have had infusions of another monoclonal antibody, rituximab. I wasn’t too keen on starting that one either but it worked incredibly well for the condition I had developed. My condition wasn’t subtle however, so that was incentive to start. ☺️ In spite of the potential list of side effects I had no issues and the infusions worked. Once the specific area of my immune system was quieted, the condition disappeared.
This may be the aim of your doctor, to get the eosinophils quieted and perhaps eventually you may no longer need the meds.

Hopefully you’ll be able to get some positive feedback from other members taking the drug and it will help you make the decision to move forward with the medication. I can’t give advice but I have a good ear to listen and strong shoulders to support…☺️ so please let me know what you decide to do and how it works out for you!

Jump to this post

Thank you Lori. Those comments are very helpful and gives me a new perspective to consider.

REPLY
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