Late onset Asthma

[Munchkin53]

Hi. I'm hoping that this forum may be able to help. Sorry in advance if this ends up a long post. I started in January with a cough that was accompanied with a wheeze. I had no other symptoms other than a continuous cough which effected my sleep. 1st visit to the doctors its a virus and will clear up. Fast forward 2-3 months. I was then given a blue inhaler, shown how to use it and asked if it improved my breathing. I could breath perfectly well. It just made me shake, they told me to use it if i got short of breath. I never did so didnt use it. Next step as the cough was persistent and i was getting tired due to lack of sleep, i was given a preventer inhaler and told to use it religiously till told to stop. I was confused, as they were talking asthma. Id just walked up snowdon without a problem how was it asthma. Anyway i did as i was told and it did indeed ease the cough. Then the problems really started. Within 2-3 weeks id been given steriods and antibiotics as they thought id a chest infection. I felt better but not massively, i was getting progressivly worse coughing more and more again. I went to spain at the end of June and just couldn't stop coughing. I was still taking the inhaler religiously. I started struggling to breathe and couldn't even walk on flat ground. 1st July i was admitted into hospital put straight on steriods and nebulised which didnt seem to actually do anything, if anything i was worse 😞. I was allowed home after the steriods settled my breathing. The medication i was on was doubled and they said they were sure it was late onset asthma. After another few weeks i decided the inhaler was making me so ill and stopped taking it over night i felt better but the cough was still there and i was struggling with breathing but not as bad without the inhaler. I was given a different preventer, which i started taking and ended up pretty much on steriods till the end of October to control the symptoms. Having seen a consultant beginning of November i was given frostair, told i had to take it as prescribed. It was definitely late onset asthma and this would make me better. By the end of November i was back in hospital with serious breathing problems even steriods didnt work anymore. I was put on a nebulizer 4 x a day for 4 days before starting to feel better. I was let home after 5 days and felt better than i had in months. 3 weeks later im struggling again. Ive been off steriods all that time and really don't want them again if i can help it. I'm taking the Frostair still as ive been told i need it. Im also using the rescue inhaler more. I fear within a week ill be on my 3rd hospital visit :-(. Has anyone else been on a similar journey ? Is there any advise anyone can give as to how i help myself ? If a get my heart rate up with excercise will i make things worse ?? Thank you in advance. Tara.

[MoyB]

So sorry to hear what an awful time you've been having and no light at the end of the tunnel yet.I'm sorry, I have no helpful advice but wanted you to know that your post is live and has been seen.

I hope someone else will be along soon who can offer better support but, meanwhile, I wonder if you might like to also post on Asthma+lung as there are some pretty knowledgeable folk on that forum (of which I'm also a member) and between us, we have a great variety of lung conditions.

Perhaps someone there will share your symptoms.

Best wishes xx Moy

[Collienut]

It might be best to contact your consultant and explain that you're feeling worse again, after only three weeks, and worried you are heading for another hospital stay. xx

[Munchkin53 in reply to Collienut]

Thank you for your reply, i tried contacting the consultant pre last hospital visit with no luck. The hospital told me they are very busy and id have to wait and speak to the doctors, of course the doctors say talk to the consultant 😞. X

[tlatino1967 in reply to Munchkin53]

That’s unbelievable

[tlatino1967]

Hello that happens to me too

[houston8]

Is it possible ur misdiagnosed? Ask them to check for pulmonary hypertension.!Also if ur on any meds that can cause lung damage. Ine drug for example is amiodarone

[Munchkin53 in reply to houston8]

Thank you. I have paid for a full heart scan in the early days as the 1st xray showed and enlarged heart. All subsequent xrays have been clear and the scan was clear as well. All my sats have always been ok as well. My voice hasn't been right for months and been really bad now since 2nd November. Im under a private consultant now and have what could be fungus down my throat but he thinks its the result of inhalers rather than anything untoward. Im back on 9th Jan for another camera but feel ill be in hospital again for new year 😞.

[houston8]

pulmonary Hypertension Diagnosis - UCSF HealthHow do they test for pulmonary hypertension?The most common tests to measure the pressure in your pulmonary arteries are cardiac catheterization and echocardiography. Normal pressure in the pulmonary arteries is between 11 and 20 millimeters of mercury (mm Hg). If the pressure is too high, you may have pulmonary hypertension.Mar 24, 2022

[Munchkin53 in reply to houston8]

Thank you ill look on the report. X

[houston8]

if they haven’t done those tests asking them to mab good idea. Mainly u need a measure of ur pulmonary arterial pressure- this is the pressure in the pulmonary artery that moves blood to lung - usually on the right side.

Pulmonary hypertension is called “ right sided heart failure “

[Ortho10]

Hi Tara.

It sounds like you’re having a difficult time.

I’m a long term asthmatic.

Have you been offered an x-ray, or had your Sputum tested for bugs, or had bloods taken to look at your IGE levels?

PB

[Munchkin53 in reply to Ortho10]

Hi Thank you for your reply. yes had all the tests etc, chest is clear. Laid up on the sofa now with a hot water bottle feeling very sorry for myself x.

[Ortho10 in reply to Munchkin53]

When my Seretide stopped working for me, I was given Budesonide via a Neb, which for me works well.

The inhaled version is called Pulmicort.

A vitamin D supplement may also help.

Good luck!

[MommaMich]

I am so sorry for your struggles. My journey started with a misdiagnosis of lung cancer, turns out that was way off. My 1st suggestion would be to find a lung specialist or pulmonologist. Have them check your eosinophils, can be checked with a blood test. While I have also been diagnosed with COPD/Emphysema, they found that I have severe asthma due to high eosinophils. Currently I am on a daily regimen of nebulizer Albuterol . I also take Spiriva & Advair for the COPD. But the real savior is Nucala injection once a month. While it doesn’t “cure” the asthma, it helps to control it. I have not had to go to hospital for asthma attack in the 2 yrs I’ve been taking it. There are 2 other alternatives to Nucala, they are Faserna or Dupixent. I personally have not taken either, but I do have a friend on Faserna, and has the same result I’ve had with Nucala. Once you are properly diagnosed & treated, it is a good idea to look into respiratory therapy. Believe it or not, most of us do not breathe properly. There are times I have flares of the COPD & have to take antibiotics & steroids. I had severe cough from covid at which time I was put on prednisone for 3 months. More recently I was given gabapentin to control the cough. Gabapentin is a nerve blocker, and it is still very new to treating/controlling the cough, but my pulmonologist has had positive results with it. Once you recover, & hopefully get respiratory therapy, staying active & mobile is very important in maintaining good health living with lung disease. Some days are more difficult than others moving around. I try to walk a bit each day, some days I only get to my mailbox in the lobby of my building, some days I can actually go on outings. Sending positive energy & strength your way. Hope this helps you

[Chopper05]

Oh my I thought I was the only one that had a cough & then told me I have asthma now. I have been battling it all since 2020. Was sent to a specialist @ National Jewish Clinic in Colorado. They have tried everything to try & fix the coughing & being short of breath. I have been in everything & have had all sorts of procedures & test. Morphine drops is about all that helps the coughing. I have had to go in disability do to it. They say I have chronic Eosinophilic Asthma. I am on Fasendra & Dupixent biologics and several other prescriptions. I wish you the best & hopefully there will be a better outcome