Losing hope now

[Madbiker1]

I have been on Xolair since May. I had previously been given mepo and benra - neither had the hoped for results.The Benra worked initially when I was loaded up on it but when it went to two monthly intervals it just fell away.

The xolair appears to have no effect - for the last two weeks I have had a cough (not something I normally have) and a lot of wheezing. I get breathless very easily.I have steroids in the house but I will not take them any more - the relief they offer is short lived and the side effects much longer lasting.

I have had eosinophillic asthma for seven years now - I work full time ( police) and grit my teeth but sadly I think the time is coming where I may be too ill to work. Things seem to be getting worse. I was 50 last month - I am mindful I am entering the final third of my life and things are getting increasingly difficult.

[CraftyLego]

I'm sorry to hear that. I have been using Buteyko breathing exercises since March and have gotten considerable relief from them. I used a Buteyko clinic practitioner called Jo Brierley. You could Google "Buteyko clinic many small breath holds" for the exercise that i do the most. I'm almost 49 so I hear you! Also, if possible, breath only through your nose.

[Sparkimoore]

Hi! I also have Eucinophillic asthma & it’s is associated with EPGA, or Churg STRAUSS Vasculitis, the old name. I’m wondering if you have this too. I’m wondering if the doctors have thought of it as it’s very rare. Severe uncontrolled asthma is often the first sign. I’ve been round the houses on high dose steroids, MYCOFENALATE MOFETIL before the MEPOLIZUMAB became available. I was initially improved on this but started deteriorsting badly after 18months.My consultant had seen a report about a drugs trial of Mep TRIPLE DOSE & as I’m in Jersey, not in NHS we were able to get this even tho it wasn’t yet approved by NICE at this dose, in 2019. I THINK it’s available now for you.

The triple dose has completely stabilized me & asthma attacks are RARE. Absolutely Unbelieveable!

I still have to be careful & am limited with what I can do, but that’s the EPGA disease.

Please mention this to your drs. It might be the drug dose you need now. NEVER GIVE UP HOPE!!

Rose

[ChrissieMons]

I have no medical suggestions, I'm afraid, but I wonder if, given your condition, you might be able to work part time? I imagine that your job can be both satisfying and stressful and clearly you don't want to give it up. Have a think about how part time might work then talk to whatever you have that is HR about options. You want to enjoy life and with a bit less stress you might feel a bit better, who knows? Good luck!

[Madbiker1]

I had tests for nerve damage last year as I was getting numbness in my feet. The tests showed nothing abnormal. I have also had nasal polyps prior to my diagnosis. I will be reviewed in September to see if xolair has worked but I already know the answer.

[hilary39]

I'm so sorry, this sounds very dispiriting and frustrating. I just wanted to say it took me about six months to notice a change with the Xolair. I am still extremely asthmatic to cats and dogs but I've been on prednisone far less--I'm down to 1-2 courses a year from 4-5+.

I hope you find some relief and can keep experimenting with different therapies! I hear you on looking forward (hopefully) several decades and wondering / worrying about what's in store.

[Caroline_ALUK Partner Asthma Nurse]

Hi Madbiker1. I am really sorry to hear that you're struggling at the moment. Why not give our helpline a call on 0300 222 5800 and you can have a chat with one of our Respiratory Nurse Specialist's.

[Josephone]

Hi, I sympathise with you fully, but don’t despair and try hard to address the issues that will improve your condition. I went through the same circumstances as you. I also suffer from eosinophilic asthma. I was a police officer at the time when I was ready to give up my job due to horrific episodes of asthma attacks. To cut a long story short I persevered and now much much better. I’m on a monthly mepolizumbab injection and practically live a normal life. Thankfully I retired after 35 years of service. Hope this is helpful.

[Karenjaninaz]

I’ve also used many Buteyko suggestions: breathe only through nose; mouth breathing allows no filtering of pollens, dust, etc. Avoid sleeping on back, exercise every day and avoid hyperventilation. When feeling breathless it feels counterintuitive to reduce breathing but it works- use slow abdominal breathing.I did get help from a practitioner in the US.

Retired US nurse anesthetist here.

[Madbiker1 in reply to Karenjaninaz]

Thank you everybody. Prior to covid my specialist was considering the possibility that I may have vocal cord dysfunction as well as the asthma - I had noticed that my voice changes sometimes. Unfortunately it seems to have gone quiet.

I have started a course of pred which has dampened the fire. I have even gone on a bit of a diet to shift some of the excess I am carrying as this will not be helping.

[Karenjaninaz in reply to Madbiker1]

Inhalers relax the vocal cords causing hoarseness. I find it varies in my case. Very annoying..