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Confusion - It should get better, but doesn't, so what's causing my asthma?

Hello there,

I am twenty years old and have been diagnosed with asthma about two and a half years ago. It started as "Well, a little bit annoying, but alright, I can do it!" and progressed to "I havn't had a day without symptoms since half a year now and needed Prednisolon about four times during that time", which - obviously - sucks. I use Enerzair, Montelukast and Salbutamol, last one on a daily basis. Since the beginning, my Peak Flow is crazy. It is between 200 and 450, right now between 150 and 330.

Last year in February, I was able to start Xolair. It was amazing, but only about six months. I started to get bad reactions to Xolair and it stopped doing something for me. As it got kind of dangerous, I had to stop taking it two months ago. My side effects were confusion, headache, nausea, loss of balance, shortness of breathe, elevated temperature, dizziness and unconciousness. This is very unusual, so we are looking for a reason for those adverse events.

We decided to put me on Dupixent, but I don't match the criteria to get that medication as I don't have the right blood counts, neurodermitis or polyps in my nose. Therefore, I am stuck with the sprays and Montelukast right now.

As I had elevated ANCAs, I was referred to a Rheumatologist, but I don' expect much from that, because my doctor - she is amazing - doesn't. That being said, I have like six familiy members with Hashimoto, so therefore there might be something going on with autoimmune. Also, my symptoms started right when I started taking birth control pills, but we could not find any real links between that and my asthma. Hormones can be a trigger to rheumatic disease, so maybe...?

I don't have Alpha-1, my lungs looked perfectly fine last time they checked, my lung capacity is slowly decreasing, but not worrying, we don't find any connection to stress or psychosomatic issues. As I have pets and do horseriding as a sport, I can't avoid my triggers, but my symptoms do not change if I am around there or not. No mold, no changes in weight (so far). I do have issues with headaches, but only once per month - yeah, that time of the month - and joint pain which can easily be caused by running which I do in my freetime.

I don't want a diagnosis, but everyone here has experience with asthma. Maybe there are some ideas about thinks worth checking out. I will tell my doctor if there is something, so we can discuss it.

Sorry for it being so long. I am just desperate.

Thanks for reading and maybe answering. I appreciate every hint.
Johanna

  1. Hi, Johanna. I'm sorry that no one ever responded to you with their thoughts. I am not an asthma expert, and we can't give medical advice for your own safety, but I am curious to hear how you are doing since you posted this and if you've heard anything from your doctor. Take good care of yourself and thanks for coming to the site! I hope the articles have been useful. -Melissa, asthma.net team

    1. Hi. Johanna. I see you received a response above by Melissa, and that is what brought your comment to my attention (somehow I missed it when you posted). No problem with the long post -- it's actually nice that you give us some information to get to know your situation. And asthma is one of those diseases that is unique from one person to another, and (as you well know), it can certainly be frustrating trying to figure it out and the best treatment for it. I say this as an asthmatic who has been dealing with this "confusion' my entire life. What I would say to you is that it seems you are doing all the right things by working with your doctor(s) and looking for solutions. As Melissa noted in her post, I am interested in knowing how you are dong today. John. Community Moderator. asthma.net

      1. Hey there,


        Thanks for your answers and the nice words. Things are pretty chaotic at the moment, so it is great to get to talk about it. Maybe it helps to g.et things sorted


        Honestly, I am still confused. We are ruling out rheumatic disease, even though we are kind of sure it isn't Morbus Wegener or Churg-Strauss at that point. I found out that my heart is mostly fine. I got a CT this week and hope for clarity about the autoimmune issues next week. The week after that one will be even more exciting as I get to speak to one of the leading asthma specialists in my country. My doctor at the local university clinic has high hopes and I trust her, but to be honest, I don't really know. Every time I thought we had the solution, everything went wrong. If this doesn't work, we will try to get Dupixent "off label" and hope it won't mess me up the way Xolair did. So that's that, we will see.


        Right now I am struggling. I got my second dose of the vaccine yesterday, but I felt miserable before and I will wait as long as I can, but I have to start the "P-medicine" in the next few days to get back on track. My peak-flow is about half of what it was a year ago. I think it will be exciting - even though I'd love to watch instead of participate. If someone is interested, I am happy to share anything new happening.



        1. Good to hear back from you, Johanna! I hate the process of trying to find a diagnosis -- there's so much waiting and wondering involved. I hope that you get some answers soon. We have some sister sites for auto-immune disorders, and so maybe they can be a help to you also, once you have a diagnosis.

          What country are you from? It seems like you have access to the latest medications for severe asthma, so that is good news. Hopefully things go well with Dupixent. When you mention a vaccine, did you mean for COVID? I'm glad you were able to get it! My heart aches for those in other places who are still waiting for the chance to get the vaccine.

          Yes, please keep us updated when you are able. We always like to know how our members are doing. 😀 -Melissa, asthma.net team

      2. Hello again,


        I am not sure whether I am happy or not - well, actually I have just stopped crying, so maybe not too happy, but no autoimmune disease. There are some blood counts which came back slightly positiv, but nothing serious or symptom-matching enough to think about a new diagnosis. They suspect false positives, but I kind of wonder about that since this happened twice. However, this isn't important anyways since they are very low.


        I mean, yay, it's not Lupus, but to be honest, I'd rather take an autoimmune disease with treatment options than having "just" asthma and nothing I can do about it. There will be a follow-up, but well... We'll see. I try to be positive about my appointment next week. I will travel about 350 kilometres to get to see one of the leading specialists for asthma, but I don't really think there is something new to discover. We will decide about Dupixent after that. I really wish for it to happen, but my experiences with Xolair were BAD, so I am scared as well. But you are right, I should be happy about our healthcare system which gives me all the opportunities and every chance to get better. I am German, by the way, and yes, it was the COVID vaccine. I really hope it will be available for everyone soon, because those who are able to get it right now are those who live in countries with functioning healthcare and so on. It is one of the most unfair things...


        My everyday life is impacted to a point where I struggle to get my stuff done between exhaustion, appointments and trying to breathe. I don't know what's next and it is scary. My amazind doctors are trying their best, but there is only so much they can do. I feel guilty, because I take that much ressources. I need a lot of medication which is expensive and bad for the environment, others have to worry for me and others have to help me out more often than a year ago. Maybe I am not that bad. In the end, I can do sports, I am active, I can study, I am very privileged. But I am only twenty now and my body is letting me down. Maybe I am just a big baby about everything and it isn't that bad. Those thoughts sneak into my mind every once in a while and it annoys me a lot, because I know it is not true, but aaargh, I don't even know.

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