Difficult to diagnose and treat asthma, not VCD... 3rd asthma doctor needed

[Shadowcat04]

My current asthma doctor has recently decided that most of my coughing and SOB symptoms are attributed to VCD. During my latest URI and flare she told me it was my VCD and to rest and use cough medicine. That didn’t work, I called in two more times- my cough and SOB was constant and she still wouldn’t help me. Urgent care a week later prescribed prednisone, finally and my symptoms began improving the next day. I also told this asthma doctor how I’d had an asthma breathing issue while dancing and it was quickly reversible with albuterol, thank goodness. She doesn’t seem to believe that either of these things happened.

I went for the VCD assessment and they did the full assessment and said I do not have VCD. Given my symptoms, history and descriptions- I clearly have asthmatic symptoms. My other doctor was talking about doing the methacholine challenge. The ENT said she saw no reason to put me through that given the two examples of asthma symptoms s that were clearly reversed by prednisone and albuterol. She suggested that I get a new doctor.

This asthma Journey began June 18, that’s 5 months of doctors, medicines, tests, diagnoses and still nothing definitive. My primary care most recently wrote his assessment as “severe persistent reactive airway disease”. He didn’t even say asthma.

Aren’t there more medicines and procedures to try for treatment? I’ve tried Flovent, QVar, Symbicort, Breo 100 and I am now on Breo 200. I am allergic to dust mites and mold and ragweed. Do they do allergy shots for that? What else do they do for hard to treat asthma?

Thanks for any ideas or thoughts on this. I feel frustrated and lost and wanting to give up- I am so tired of it all.

[Tugun]

Hi,

I have to agree - it is worrying the number of doctors who want to attribute symptoms to VCD without any real reasons other than it is the latest "fad". I agree with the person who said ,"Get another doctor." You are not going to change that doctor's mind and the more you try to, the more obstinate the doctor will become as it then becomes a matter of ego. (strong sarcasm here) - "After all the doctor IS a medical professional and surely you don't know anything about your own body." Change doctors and don't give up. Ask around or just take a chance on the next doctor. You will find one who will help you. All I can say is keep looking. I have done that and eventually you do find the answer. See an allergy specialist and also try to build up your immune system. Try as many different things as you can and eventually you will find what works for you. We are all different and what works for one, may not work for another but is often worth a go. I have tried many things and when I finally found what worked, I could look back at the failures and realize that I was glad that I never gave up looking. Each failure moved me in a different direction and often led to information that helped me find the right answer. Wishing you all the best.

[soniaackerman]

Hello,

Goodness sounds like you’ve been through a lot. I would agree, get another dr or push to see a asthma consultant.

My asthma is easily triggered by URI, weather, strong smells of cleaning products or paint, candles etc. I have been attending a consultant for a few years now, who initially mentioned during a very bad flare I could also have VCD. Thankfully I did not. But he sent me to chest physio, and they said I also have a breathing dysfunction whereby my diaphragm isn’t doing it’s job properly and was pushed in to that state with my asthma attacks. Attending physio helped. For my asthma The consultant put me on symbicort, a tablet called singulair, and a steroid nasal spray called avymis. The tablet and spray really help if you react with allergens. I’ve been a year now with less flares and symptoms.

Hopefully you get sorted soon.

[ChrissieMons]

I think I'd bypass the GP and see the consultant. You've had a rough time with all the different treatments but I wonder if you've given each one time to work properly. I have found that I need to trial a new medication for a couple of months to see if things calm down and/or there are side effects which stay or go. Asthma is a rotten thing and hard to pin down as we all seem to have different reactions to things. Most of all, the condition itself is tiring. Have you spoken to the nurse at asthmauk? you might find that very helpful.

Best of luck with it all.

[Lysistrata Administrator Community Ambassador]

Huge sympathy as I have been in similar situations and had similar issues with doctors. I agree with others who have said find a new consultant. Although you do have to give them a chance, there is also a point where you have to cut your losses because they will not change their minds and will drive you nuts while being unhelpful.

Is your asthma doctor.really an asthma doctor? Or.a general respiratory consultant? While I have had some bad times with asthma specialists too, I more often find that general resp ones are not up on the latest in asthma but will not admit it - they often consider they know it all even when their main interest.is.eg lung cancer, and realistically they do not have time to keep up with all areas of respiratory. I saw one like that who insisted there was no such thing as asthma that couldn't be controlled, and didn't know about the latest inhaler options.

Could you see if there is a centre near you which specialises in asthma and ask for a referral?

I also agree with ChrissieMons on ringing the Asthma UK nurses. They are very knowledgeable and helpful ans csn talk it all through with you, offering suggestions on what your options are.

[Hidden in reply to Lysistrata]

Yes, I second this about resp doctors. Chest clinics are great and all but if you’re not a typical patient, then a specialist asthma clinic is better!

[Violetta25]

Hi,

I've had a cough since January and was eventually given a Respiratory appointment this month. The registrar I saw said I had some raised white blood cells and that I might have Eosinophilic asthma. I'm going to have some lung function tests to help rule out anything else.

I'm wondering if that's what you have?

[Shadowcat04]

Thanks for all the feedback! I really appreciate it. I agree, my first trial with Flovent and Symbicort probably wasn’t long enough. The QVar was working, but the asthma doctor wanted to put me on something stronger- thus the switch to Breo Ellipta 200. Things have improved, but I still use the inhaler or nebulizer at least once a day and up to 3 times a day.

I’d really like a doctor that will do some new testing - like CT or bloodwork something to see if there is anything else going on in the lungs. Sometimes I have a bit of pain on the right side, too. My GP is trying to help me find a new lung specialist. I’ve been stumped by insurance, location of doctors, not going back to the same clinics, yikes! But, today, my wonderful GP sent me a message asking if I had found a new Specialist yet, how I was feeling and if I had a follow up scheduled anywhere. He later messaged me a name of someone he’s heard positive things about. Ironically, I’d been reading about her last night. So, maybe it’s a sign! I hope it’s not a month until I can get in! It feels like a flare is just a step away. I don’t really feel settled at all.