So finally got my specialist appointment for a consultant that I was with previously waiting since last August. I was waiting so long I went to see him private and because I have involved in a study he said he wouldn't change anything with my inhalers until he was seeing as a public patient in the hospital. Went today, seen by one of the trainee doctors, and said that the consultant wasn't changing anything but going to do bloods and arrange another breathing test (which I already had, and have very good lung function) and will follow up in 3 months. I was just after explaining to her that I am always breathless, and sick. Gave her my peak flow readings and notes that i made. I got very upset and my consultant came in from the next room, and kinda gave out to me. Said he can't change me to anything as my lung function is good and I don't quality for certain treatment. Eventually he said I can change you from the Steride if that's what you want and put me on Revlar and Incruse Ellipta inhaler one puff of each a day. ( I think can't read the doctors writing )..
I had been waiting impatiently for this appointment pining all my hopes on him coming up with a solution, but it was like I was invisible, she barely listened to my symptoms when I was trying to explain. Again I'm left for another 3 months to look after myself. I feel like giving up all my inhalers, and if I'm sick they will have to do something.
I do wonder why we have specialists because when your symptoms don't match their book, they almost don't want to know you. Very very frustrated at this stage.
Written by
Mellypad
To view profiles and participate in discussions please or .
There are a number of things you have sort of skipped over that makes it hard to figure out what might be actions you can take.
So first, can you clarify some things? Pardon the nosiness, but these things can have an impact:
1. how old are you? Where do you live - in a city, small town, on a farm? Is there much pollution where you live? Do you routinely exercise - if so, what kind/how much/how often/where? Do you ever have problems during or after exercising? has your routine changed much over the padt few months in response?
2. When did your lung problems first start, and what was happening/where at the time? Who diagnosed you as having asthma? Based on what criteria? Is that the same physician you have just seen?
What are the medications you have been given that seemed to help (when, for how long, did it stop), and what has been tried that didn’t help at all? Please give us the exact names.
3. Are you in school? Do you work? Are your symptoms better or worse at any particular time of the day/night? Place? Weather? Certain people around - sometimes certain colognes, laundry detergents, cleaning supplies, even brands of some office supplies (like a copier sharing your office space) can produce pollution that can be a massive trigger.
4. Now please tell us specifically about the trial you are in — what is the drug being investigated? Do you know if you are getting the actual medicine or a placebo? How long have you been in it? Are your symptoms better/worse/about the same as when you started? Have you discussed your problems with the physicians running the trial? Talked to your regular GP about the problems/issues? What does your primary doctor say?
I do understand how frustrating and terribly frightening this can be. I went through something similar for almost 20 years — took 9 years to get a partial explanation, but omitted what turned out to be the most important parts of the story. Much of the rest of the time, in my case, we were waiting for research science to catchup — we knew it was tied to eosinophilia, but not how bad or how it responds differently o the problems. In my case, it took a brilliant and determined physician, and me — talking about the problems all the time, with all my different doctors, and tracking all the different problems UNRELATED to my lungs that eventually helped tie it all together.
The hardest part for patients in our circumstances is that medicine is only partly science — a good part is art. So yes, doctors are trained to recognize that the vast majority of the time a collection of Symptoms equals X diagnosis, and Y treatment will “fix.” Many doctors have trouble seeing what else might fit those symptoms because they may have never encountered it before.
So I’d recommend caution before suddenly stopping steroid inhalers or oral steroid medications — doing so can trigger an extremely dangerous reaction in your body. If you really want off of them, get a doctor to tell you how to safely wean your body off its dependence on them.
And also consider that perhaps your current lung symptoms are not evidence of a worsening problem with your asthma, but possibly something else. It could be anything from (sorry — I know this sounds ridiculous and mean) having gained weight and the weight causing pressure on your lungs or perhaps it’s environmental, and caused by something like toxic mold hidden in the wall cavities of your home, school or office.
Good luck and let us know more. Maybe someone will have another idea.
I can definitely relate to your experience. There is also a lot to be said about the connection between anxiety, mood and asthma so I'm sure what you're going through is exacerbating the symptoms you're already dealing with.
You may have heard about this before, but have you considered incorporating CBD into your regimen? It has anti-inflammatory properties to fight asthma symptoms as well as powerful anti-anxiety effects. It's like a double-whammy and won't counteract with any medication you're currently on. You might want to think about it. Here's a decent overview: treatasthmaathome.com/cbd-f...
I'm trying CBD now and it's an education. What I've had so far is the "Hemp" version, which I understand is "Entry Level". It worked once as I intended, the other times it just made me sleepy. I ordered more and we'll see what happens after more exposure.
Hey there. Glad to see more asthmatics taking the CBD plunge. You will definitely see results if you find the right dosage and choose the right product. The CBD market is like the wild west right now so it's buyer beware.
But I can tell you, Pure Spectrum is an awesome, pure, USA-grown CBD brand. It's not the only good brand but it's one that I can personally vouch for. They do rigorous 3rd party testing and post it on their website as well. You can use the code "treatasthma" when you purchase for a 10% discount... the code doesn't expire. Good luck and happy breathing!
Hi Mellypad. If you are still on the trial you really need to tell them about your breatlessness and sickness. It could be someting to do with that.
After 5 yrs of athsma and many different inhalers I be sick regularly, become exhausted from coughing increased sticky mucus, little sleep I have to go on steroids. Always improve by day 4 on 25 mg prednisone then half tab 5 days a s quarter tab 5 days however 2/3 weeks later the cycle comes back. I am now pinning all my hope on getting a good pulmonoligist as my breathing tests are good but I suffer S.O.B a lot
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
