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Thanks for your reply and understanding cmi. I feel like I am at the point where I am going to have to start pushing harder or make an appointment at the Mayo or JNH. My family is urging me to go somewhere else because my decline has been so fast despite the fact that I am trying so hard to go back to some sort of normalcy and at least stable state. I am also a member of a Facebook group and found a post yesterday regarding use of inhaled medications on a podcast that I am going to make time to listen to today. When I went for my breathing test at the first of October everything was good. I passed with flying colors and I felt like the tech was wondering why I was there.

I seemed to get worse after the two week mark of being on a Flovent inhaler. This was prescribed before my C/T scan and diagnosis. I should have questioned the need more when prescribed as the my breathing had been fine up until then and I was functioning normally as far as my exercise routine and daily routine it was just a feeling in my chest like I had been exercising in the cold. A cold burn/heaviness in the center of my chest. My two previous visits to the urgent care had been diagnosed as costochondritis and treated with tapering doses of Prednisone which seemed to clear things up for three or four weeks and then it would start up again and so I was referred to a Pulmonologist.

I am wondering if somehow that inhaler opened things up and whatever was in the right middle lobe escaped and is wreaking havoc in my body. I was taken off the inhaler because I told the pulmonologist I thought I might be having a reaction and he put me on the next (3rd) round of tapering Prednisone to be followed up with starting Singular and twice daily nebulizing Budesonide. In the middle of the round of prednisone I awoke with swollen throat to the point I could hardly keep my mouth closed on my CPAP because the air had nowhere to go. I had another trip to the ER and they gave me Hydroxyzine which I think was to calm me down but it is also an antihistamine and so it helped my throat although they did a CT of my throat and found a small growth on my thyroid which they say is not big enough to worry about and an inflamed area that I am going to go and see a ENT about.

I notice when I am off any medication I start to get achy behind my right shoulder blade and at the top of my chest and out to right below my should blades and armpits. This starts to happen and I want to take something and I think they are running out of things to give me. I'm not sure if I have developed an allergy to steroids or if something has been let loose in my body and when I start taking something new the lungs feel better but I am allergic to whatever is being coughed up or moving better through my body. This sounds totally crazy as I am typing it but that's how I would explain the scariest symptoms that I have….an allergic reaction and I'm just not sure if it is to the medications or something that is in my body. Despite the positive ANA the rheumatoid levels looked good, I was told so there was no referral to an immunologist.

I had another allergic reaction on Sunday night and was able to take an antihistamine at 4 a.m. and then again at 9 to calm things down enough that I didn't feel the need to go the ER but just barely. My throat was so closed off that I could hardly breath or swallow. I was able to make contact with my GP who spoke with the pulmonologist and they decided to have me stop taking the Singular pill but to keep nebulizing. I haven't taken a treatment since Sunday evening because I am terrified. My appointment with ENT is later this morning and I am going to see if he will prescribe and EPI pen before I nebulize again. Having said that though, I did take Mucinex yesterday and during the evening really went on a coughing jag that seemed more productive than usual and when I woke up this morning my throat was a little bit restricted but I am trying not to take anything until after my ENT visit. Can you become allergic to yourself. I have so many questions that have not been answered.

I really appreciate the support, input and encouragement that I am receiving from this group. I am hoping to one day be able to contribute something that might help someone else.

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Replies to "Thanks for your reply and understanding cmi. I feel like I am at the point where..."

Yea you e been through enough I think you should go to a another pulmonologist and see what he or she thinks as well are you here in New York I would say go to Manhattan the drs there are awesome as well it’s where I had my bronchoscopy done have you had one to see exactly what’s going on inside your body? Let me know coco please feel better let us know how you are doing and what dr says

I often have outsized allergic reactions to random things – as do my daughters. My husband worked for years as an EMT, and he gives us Benadryl and insists we chew the tablet and hold it under the tongue – it gets into the system faster than a swallowed antihistamine. I have been able to avoid Epi Pen injections by doing this many times. Also, if you are suddenly having these symptoms, has your doc prescribed an EpiPen for emergencies? If not, it sounds like it would be a good idea to ask for one.