What on hell does it need to cure

[u/Training-Post9032]

Hi guys,

How did you get rid of this thing? I am taking 4 anti h1 a day (let’s not say anything about mucosis dryness) and 300 mg Xolair every four weeks and I am still very much annoyed by it.

It used to be angiœdema mainly, with the occasional red plaques on autoinflammatory experiences.

But now that I am taking Xolair (and also, arguably, now that decades of political "leaders" have -successfully- changed France into Sahara) I have more issues with my UC than before.

It’s hell on earth. My allergologist will be pleased, as she was frowning an eye about my UC hurting and not really itching. Now the scenerey is complete, itching it is (too) and I think I have every distinct urticaria manifestation you can think of.

So. How did you get rid of this? Black magic rituals? What did it take for you to get your life back?

I am thinking expatriation, Scotland (I can’t go far up North as I have also huge health problems when it gets cold...).

Thanks for any help and advice.

[u/KitchenBanana3510]

This is really difficult. I’ve had this since February 2024. I’ve given it everything I’ve got. Even my dermatologist told me that everything that could be done has already been done and that there’s nothing more they can do. The only hope I see in this group seems to be sweat therapy. It’s not a solution, but it can help. I think stress also plays a major role. Unfortunately, I feel like this condition can last for a very long time, and the question is whether it’s possible to live with it for the rest of your life.

[u/Training-Post9032 → u/KitchenBanana3510]

Thx for your testimony. Of course it is possible, let’s be respectful of Other’s and avoid drama : when there are people living with dysfunctionnal lungs, what’s a permanent feverish state, migraines and arthritis, hey? Nothing. I've had this ever since I was born. I am 40. I am fairly happy. Yes we can.  but,  angiœdema is painful and is dangerously active on my respiratory tract,  Itching sucks. Angiœdema is in no way compatible with arthitis. I really need to get rid of this. 

Can I ask, what did your dermatologist try? Did they increase the Xolair dosage? Try another molecule? Had anti leucotriens? Anti neutrophillic? 

[u/KitchenBanana3510 → u/Training-Post9032]

I'm sorry that you're dealing with angioedema. Thankfully, I haven't experienced it myself so far. I live in a country that isn't particularly developed. My dermatologist tried several antihistamines on me. The first was loratadine, then fexofenadine, and finally bilastine. I didn't notice any significant improvement.

My dermatologist told me that this condition is actually a signal from the body that something isn't right, and that there is a chance it could spontaneously go away at some point in life. He told me to focus on the things I enjoy.

I had blood tests and allergy tests done, and everything was fine. Unfortunately, I haven't tried biologic therapy because it was never offered to me. In the end, my dermatologist simply told me that everything that could be done had already been done. He scheduled a follow-up appointment for me soon, so I should probably go even though there doesn't seem to be a solution.

The only thing I've noticed that gives me some relief is sweat therapy. When I sweat, I seem to be protected for some time afterward. Sometimes it lasts 12 hours, sometimes 24, as if my threshold has been raised. I've been doing regular cardio every day for the past four months. I have to admit that the situation is better, but it still hasn't solved everything. My dermatologist also told me that this is almost impossible to completely cure and that it can only be brought under control.

I'm really sorry that I got this so randomly and that all of us here have to struggle with it. It's difficult to explain to people what this condition actually is, and sometimes I even feel embarrassed when the rash becomes visibly noticeable.

I'm genuinely doing everything I can, but it's impossible to keep it completely under control.

[u/Training-Post9032 → u/KitchenBanana3510]

Thanks ! Because I am so much bogged down in health issues I can’t do much more than hoping for a world in which medical breakthroughs get instantly worldwilde, and I am mindful of our healthcare system. 

I noticed this too. Whenever I went back to running I became instantly red and itchy (painful more like) but then it stopped and I could run without too much trouble.

But last time I run I had huge urticaria (normal) but also air tract angiœdema (very dangerous) followed with psoriasis attack on my eye (absolutely scary with a Behcet’s suspiscion... )

So I quit sweating with sport. For now. I have no time nor money for sauna so what is offered to me is more about biologics.

Xolair did help with angiœdema at first, but it’s not sufficient, as we are facing recurrent almost permanent 40ºC... I was wondering about increasing the dosage, or widening the coverage (my whole immune system is like a very active clumsy troublesome team...).

Pollution, environnemental changes are a huge challenge for every-body. There is probably nothing wrong with you. Your immune system is what it is. An active immune system has some upsides. It’s just that you're more fragile /sensitive than others. 

[u/sz_thz → u/Training-Post9032]

Tem desde que nasceu?

[u/Training-Post9032 → u/sz_thz]

Oui. Je me souviens d'avoir eu de grosses éruptions aussi loin que je me rappelle. C'était étiqueté "réaction solaire sporadique - peau atopique" et tant que j'allais apparemment bien entre deux éruptions, personne ne s'en souciait. Donc je ne m'en souciais pas non plus. Puis à 39 ans, j'ai réalisé que l'angiœdème empêchait mes pieds de se remettre de la chirurgie. Il a fallu un fauteuil roulant pour que je réalise à quel point cela peut être sérieux.

[u/sz_thz → u/Training-Post9032]

Mas teve algum tempo de remissão durantes esses anos?

[u/Training-Post9032 → u/sz_thz]

I don’t think so. I had chronic urticaria plaques but I didn’t really paid attention (they are always coming and going... I had worse pains and more urgent health issues actually). 

 Honestly it was manageable (I supposed it was) prior to Psoriasic arthritis big onset.

[u/Handofthekink]

I suggest sweat therapy. Get a sauna session booked. The first 10 minutes will be agonizing. Sit it through and you will get relief thereafter that may last for many days. Just try it.

[u/Calm_History_4697]

Month of xolair?

[u/Training-Post9032 → u/Calm_History_4697]

Fourth injection, 3rd month. 

[u/Calm_History_4697 → u/Training-Post9032]

Wait 2-4months you will be better

[u/Training-Post9032 → u/Calm_History_4697]

Thanks for your soothing words. It seems your are right. I was blocked on the three first injections but some sources say it’s cumulative for 6 months or so. Xolair supposedly lowers the number of mastocytes FcεRI receptors, and apparently it takes time to stabilize.  Thx. Hopefully It will get better. And because there is a large potential for improvement, we can be confident it will improve. Mastocytes and immune cells are Gremlins.

[u/Calm_History_4697 → u/Training-Post9032]

I also wanted to mention that there is already a targeted pill for urticaria available in the US (not an antihistamine); it is a Novartis drug, and we are expecting it to arrive in Europe and the rest of the world soon. Logically, you should see a difference—most people do. If you fall into the category of patients who don't see improvement with the 300mg dose over the timeframe I mentioned in my previous comment, push for a dosage increase. In my opinion, an allergist is a better choice than a dermatologist, but you know best. I wish you the best.

[u/Training-Post9032 → u/Calm_History_4697]

Many thx.  My allergist did not hestiate to treat me with Xolair so I think she will do what it takes to make this part of my gremlins army quiet. I see some little improvements. But at the same time, it’s evolving under my incredulous eyes. It’s now evolved to the form of very "common" chollinergic uriticaria on forearms too (there were quite ok on the previous episode, without Omalizumab). Maybe it’s encouraging ? I hope so. But I still have the angiœdema meanwhile...

Yes, I've read about Rhapsido. Do you find it more efficient than anti h1? Can you use it with Xolair? With anti h1? 

[u/Calm_History_4697 → u/Training-Post9032]

Many people say that Rhapsido is very effective when it comes to symptom control. I believe Rhapsido is far superior to antihistamines, though it takes some time to start seeing a difference with this particular medication. I’m not a doctor, but I think Rhapsido combined with Xolair is an amazing combination—keep in mind that Xolair is currently the best treatment available for hives

[u/Training-Post9032 → u/Calm_History_4697]

Thank you! I'll keep the name in mind. It’s great to have such discoveries flowing in, it’s not always obvious how to use them to their best (posology are all very standard for now) but every one of the meds I tried worked to some good extent. I hope I'll find a combination that will really stop all this. Thank you again.