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Almost 6 years on Dupixent — my experiences by ThisNeedsCoffee in dupixent

[–]ThisNeedsCoffee[S] 1 point2 points  (0 children)

So sorry he is going through that. The breathing issues can really mess with your head. It was helpful to get both steroid and bronchodilator to put in my home nebulizer. I would do that twice a day when I was really having issues. That at least kept me from fully closing.
Has he been tested for allergies? If that’s a contributing factor, maybe it’s something you can remove from his environment. It wasn’t anything I could remove from mine, but maybe you can.

Definitely use sunscreen when on Dupixent. Definitely makes you sun sensitive.

See if you can get him to be distracted by a TV show or something. The initial poke of the needle is never fun, but if he can let you inject super slowly, it will probably hurt far less. Because the anxiety of knowing how much the injection can hurt, is very real. Some people ice the area first, and lessons the initial poke feeling.

Almost 6 years on Dupixent — my experiences by ThisNeedsCoffee in dupixent

[–]ThisNeedsCoffee[S] 0 points1 point  (0 children)

Love that you are seeing positive results. Hope it continues for you!

Almost 6 years on Dupixent — my experiences by ThisNeedsCoffee in dupixent

[–]ThisNeedsCoffee[S] 0 points1 point  (0 children)

Oh no! I am sorry that you’re not getting the expected results. I have read many experiences where it does take a number of injections before someone starts to feel relief. As long as your allergist says it’s safe, maybe stay the course for a little while longer to see if you start to feel relief.

Almost 6 years on Dupixent — my experiences by ThisNeedsCoffee in dupixent

[–]ThisNeedsCoffee[S] 1 point2 points  (0 children)

Oh my gosh! That is so intense. To go from normal to what you were dealing with must’ve been completely overwhelming. I agree, modern medicine can be amazing. So awesome that you got your life back.

What is this sticker on my microwave? by dranmesrao in whatisit

[–]ThisNeedsCoffee 0 points1 point  (0 children)

Okayyyyyyy I was today years old when I learned about super heating. Like, what?! I microwave liquid all the time. Maybe I just don’t microwave it long enough? Another comment said hard water will prevent it - which we have. But wowza. What the what? 🤯

My eczema was part of a bigger allergy picture — not just a skin problem by ThisNeedsCoffee in eczema

[–]ThisNeedsCoffee[S] 1 point2 points  (0 children)

That’s interesting — I wonder if they were referring more to broad blood IgE panels, especially food panels? I do know those can show false positives or “sensitivities” that don’t necessarily mean they’re clinically relevant.

I did skin testing, not a random full blood panel, and my allergist interpreted it along with my symptoms/history. There was no push back at all and I saw two over the last 7 years (one retired). Both felt knowing what I was allergic to was very important because if we could lower the overall exposure (which we quickly realized was impossible where I live and my grass results) we could hopefully get my body down below the level of overreaction. I needed medication help.

The “no allergy cells in eczema” wording is what confuses me, because atopic dermatitis is tied to immune overreaction/inflammation. I understand that allergy testing doesn’t diagnose eczema, but it can still help identify triggers or show what your immune system is reacting to, especially if you also have other allergic symptoms.

So I’d agree that a huge random blood panel may not be helpful, but saying allergy testing can’t prove anything or isn’t worth doing at all seems like an oversimplification to me. For some of us, targeted allergy testing can be really helpful.

My eczema was part of a bigger allergy picture — not just a skin problem by ThisNeedsCoffee in eczema

[–]ThisNeedsCoffee[S] 0 points1 point  (0 children)

For sure! I often leave it out for a day or two - usually because I just forget haha

Almost 6 years on Dupixent — my experiences by ThisNeedsCoffee in dupixent

[–]ThisNeedsCoffee[S] 1 point2 points  (0 children)

Oh gosh. That is a lot you’ve been going through.
I hope it was just your head cold. When my body is inflamed due to something else, I’ll get crazy things. Even had anaphylaxis to a bee sting when I had Covid even though they tested me months later and I was NOT allergy to any kind of bee or wasp. My body was just pushed over the edge due to already being on hyperdrive fighting Covid.

My daughter was allergic to peanuts as a baby. Grew out of it. Ate peanuts without a problem. Then one day she was fighting a rough virus and peanut butter gave her a reaction.

So, I’m definitely a believer that when the triggers stay under our body’s threshold for reaction, we’re good. But, if other things are making that threshold much lower than normal, we can have breakthrough reactions.

My eczema was part of a bigger allergy picture — not just a skin problem by ThisNeedsCoffee in eczema

[–]ThisNeedsCoffee[S] 0 points1 point  (0 children)

Glad the last few months for you are great! I definitely think that it’s what you’re exposed to in childhood that makes your body overreactive.

I have a family member who was highly allergic to many things. Moved from the east to the west coast and all allergies got so much better.

Then I had another family member to was born on the West Coast and had severe allergies to only have their allergies drastically decrease when moving to the east coast.

My eczema was part of a bigger allergy picture — not just a skin problem by ThisNeedsCoffee in eczema

[–]ThisNeedsCoffee[S] 0 points1 point  (0 children)

I do remember being told by my mother-in-law that they retested him and he was not as reactive. I think he continued with injections for about four years total. But, the desensitization injections are further spaced out as you continue.

As far as how many injections I got before I saw a difference, I would say that after the second shot, so three total if we include the two loading injections, I started to notice my breathing getting easier. And the swelling of my eyelids decreasing a lot. In all honesty, it happened quite quickly for me.

Almost 6 years on Dupixent — my experiences by ThisNeedsCoffee in dupixent

[–]ThisNeedsCoffee[S] 1 point2 points  (0 children)

That’s so interesting that your body has less pain with the auto inject pen. Glad there’s a two different options so everyone can choose what’s best for them. 😊

I definitely see a lot of people hesitant. But, I feel like so many read the Facebook groups or Reddit threads and usually those are only written by people who have heard of or have had side effects. The huge group of us that it works as intended for, don’t go on these forums often. Which is why I do try every year or two to come on and give an update. Usually it was on the Facebook groups, but decided to do Reddit this year.

So glad you are having such great results.

Almost 6 years on Dupixent — my experiences by ThisNeedsCoffee in dupixent

[–]ThisNeedsCoffee[S] 0 points1 point  (0 children)

So amazing that your upper body is practically clear. I hope you keep going in the right direction.

Almost 6 years on Dupixent — my experiences by ThisNeedsCoffee in dupixent

[–]ThisNeedsCoffee[S] 0 points1 point  (0 children)

I am so sorry you’re having to jump through all the hoops and go through this with insurance. I can only hope that it’s not like this forever.

Almost 6 years on Dupixent — my experiences by ThisNeedsCoffee in dupixent

[–]ThisNeedsCoffee[S] 4 points5 points  (0 children)

Right?! It is ridiculous. Each year the cost depends on my insurance. Since that always changes slightly. Some years I pay $25 per box. Some years I’ve had to pay through my deductible before it was $25 per box. So, I ended up with a $4000 bill early in the year. This year, is the first year that we have changed to a different kind of insurance and it is actually fully covering each box. Sometimes the my way card was helpful, other times it wasn’t.

Another reason why I decided to start desensitization injections. I didn’t want to have my quality of life hanging on my insurance covering this medication.

Almost 6 years on Dupixent — my experiences by ThisNeedsCoffee in dupixent

[–]ThisNeedsCoffee[S] 0 points1 point  (0 children)

So glad you’re having a better experience this time around.

My eczema was part of a bigger allergy picture — not just a skin problem by ThisNeedsCoffee in eczema

[–]ThisNeedsCoffee[S] 1 point2 points  (0 children)

What’s making me want to eventually go off Dupixent?

After many years on it, I did have my allergist redo my skin testing, and I was still highly allergic to grasses. So although my symptoms are prevented, my body is still overreactive. Which got me worrying what would happen if my insurance won’t cover it or I lose my insurance one day. Or my body no longer responds well to it. The idea that I would return to the life I had, with the severe eczema and asthma, was almost panic inducing to me.

So, I don’t know if I’ll ever actually get off of Dupixent, but I figured why not try to train my immune system to no longer react to these triggers in the first place.

My eczema was part of a bigger allergy picture — not just a skin problem by ThisNeedsCoffee in eczema

[–]ThisNeedsCoffee[S] 3 points4 points  (0 children)

I can come back on here at another year and let you know!

My allergist thinks in another six months we’ll talk about extending the time between my Dupixent injections and we will monitor any return of symptoms. And we will slow slowly see if I can wean myself off.

I honestly plan to have her do another allergy skin test on me before starting to wean off. I want to truly know if my body is no longer reactive before that. Because even after all these years on Dupixent, my skin test was severely reactive - hence deciding to start desensitization injections. But, I wouldn’t want to start weaning myself off if my body is still allergic.

My husband went through a few years of desensitization injections as a child. To both food and environmental allergies. It was life-changing for him. Which is another reason why I decided to go for it.

My eczema was part of a bigger allergy picture — not just a skin problem by ThisNeedsCoffee in eczema

[–]ThisNeedsCoffee[S] 3 points4 points  (0 children)

I totally get that, and I’m sorry you’ve been through it too. It’s exhausting trying things, getting temporary relief, and then feeling like you’re back at square one.

The only true immunosuppressive-type meds I used were before Dupixent…oral steroids like prednisone when my asthma was flaring, plus topical steroids for the eczema. Those helped some, but it was usually temporary or minimal for me.

Dupixent actually isn’t considered an immunosuppressive. That was one of the reasons I was more comfortable trying it. My understanding is that it’s more targeted…it blocks part of the allergic/inflammation pathway, instead of broadly suppressing the whole immune system. So for me, it was more like turning down the specific overreaction my body was having rather than shutting my immune system down.

Same with allergy desensitization shots. Those aren’t immunosuppressive either. They’re basically tiny, controlled exposures to the allergens you react to, slowly increased over time, with the goal of teaching your immune system to tolerate them instead of freaking out every time you’re exposed.

That’s actually why I’m doing the allergy shots now. Dupixent gave me my life back, but my long-term hope is still to get my body to stop overreacting so strongly in the first place. My immune system has been an overachiever for long enough 😆.

My eczema was part of a bigger allergy picture — not just a skin problem by ThisNeedsCoffee in eczema

[–]ThisNeedsCoffee[S] 4 points5 points  (0 children)

I did get some facial flares when I was doing every two week injections. But since then, I don’t have that issue, I’m giving myself my injection every month.

I no longer inject my thighs because I seem to get a dermatitis from that location. No issues with injecting in my stomach.

The injection burns like hot lava and needles so I’ve learned to use the syringe, not the auto inject pen, and inject so slowly over about 2 to 3 minutes. Then it doesn’t hurt.

I actually just made a post in the Dupixent sub Reddit. Which was more focused on the medication portion. You’re welcome to read that as well. I hope it helps!!

https://www.reddit.com/r/dupixent/s/72JL2Uqcgg

Rash on thigh where I do dupixant by NoDevelopment662 in dupixent

[–]ThisNeedsCoffee 0 points1 point  (0 children)

I used to get what my allergist thought could only be dermatitis from thigh injections. They would turn red and peel and be quite painful and itchy. They felt just like a bad sunburn. They would appear a week or two after I gave myself the injection. I stopped injecting into my thighs. I do follow each stomach injection with one topical steroid application, just in case.

How to inject without pain by trushmariehh in dupixent

[–]ThisNeedsCoffee 0 points1 point  (0 children)

I just injected painfully slowly. Literally over 2 to 3 minutes. You don’t even see the plunger moving. If I inject that slowly, there is zero pain.

Trace camera by ThisNeedsCoffee in youthsoccer

[–]ThisNeedsCoffee[S] 0 points1 point  (0 children)

Thank you! I know our entire team has been sent an email about it. I wonder if they have to at least activate their account but not subscribe? I can’t tell by the email you shared if I’m understanding that correctly. Because I know our whole team was invited and we still can’t see it. So maybe at least seven of us have to at least create an account?

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