Finally getting somewhere!

[MrsCMK]

Hey guys!

I recently posted in here regarding my lack of asthma diagnosis- I had been fobbed off for almost a year (for breathing issues linked to severe allergies) with doctors telling me that I must be anxious, stressed or depressed (because I don't wheeze), despite me pleading with them to believe me when I said my mental health is fine. Anyway, my persistence has paid off!

I am historically a very allergic person with many triggers and have been under immunology for several years. Last summer I was very poorly with breathlessness, which I knew was allergy related and 10 days ago, I had my first NHS respiratory consultant appointment, to which I was apprehensive after being fobbed off for so long.

All went well! The consultant applauded me for digging in my heels and refusing to take no for an answer. He was also very shocked at how poorly my condition had been managed and finally gave me my Allergic Asthma diagnosis...woohoo! In his words, my "IgE's say it all!"

Today I saw my immunologist for my quarterly appointment and things were very different (now that I have a diagnosis for the breathing issues). He discussed desensitisation therapy and also the possibility of initiating Omalizumab treatment- this is where it gets frustrating. Unfortunately, I don't currently qualify for the treatment because I have not been prescribed enough courses of steroids in the last year....arghhhh! He understood that I had been under-treated and said that he would discuss this further with "the board" and would get back to me.

I'm not hopeful but despite me dreading the thought of another summer being housebound and not being able to breathe properly, I'm also so grateful for my new respiratory consultant who has given me the diagnosis I have been waiting for and feel that this has been a breakthrough. From here, I guess it's just a waiting game to see how ill I become when the pollen count increase and then a case of what my consultant decides to do from there.

Sorry for the long message, I just wanted to share for those that are in my position to let you know that there is hope if you remain calm and persistent

[Mogget]

Oh my goodness, I know I've said it before, but this is me exactly! Very pleased to hear you've got your allergic asthma diagnosis. I'm worried about the upcoming summer too as I had an awful one last year. I saw my cons last week and he's going to see about making a case for me to a panel to get me Xolair (omalizumab) as I don't quite meet the criteria either. Am maxed out on all other treatment options but still having trouble.

That's interesting desensitisation therapy has been mentioned. I asked about it once and was told it wasn't really an option.

Fingers crossed you get onto one or the other treatment options relatively soon-ish!

[MrsCMK in reply to Mogget]

I remember, yes...our conditions are so very similar! When I say we discussed desensitisation, it was discussed but the outcome was a no because I’m highly allergic to too many factors- apparently desensitisation shouldn’t be used in those that are “multi-allergic.” He said he would put it to the panel for debate also but pre-warned me that he’s 99% sure that it’ll be a no.

I really hope that you do get granted the Omalizumab treatment! I’m not sure what my outcome will be.

Do you mind me asking what it is you’re allergic to and what it is that you currently take for it? I’m currently on Montelukast, Loratadine 10mg x 4 a day (huge dose), Seretide (due to be switched to Fostair) and Chlorphenamine PRN for when my symptoms get extreme. I also use a lot of salbutamol.

[Mogget in reply to MrsCMK]

Ahh yes - that was the reason I got too - that it's not / less effective when someone has multiple allergies. I'm allergic to grass pollen, tree pollen, house dust mites and animals like cats, dogs and rabbits. Might be allergic to other things too as it wasn't an exhaustive blood test. But those things are definitely the biggest triggers.

I'm on Flutiform (was previously on Seretide and then Fostair), Spiriva Respimat, montelukast, theophylline, fexofenadine and salbutamol. I've not heard of Chlorphenamine PRN before but just looked it up and can see it's an antihistamine - is it a very strong one and does it work for you (I guess only to a point)?

That's a shame you've been pre-warned it's likely a no! What are the next steps with your asthma consultant? Can that person put you forward for Xolair if the immunologist fails? Or does your asthma consultant want to try you on other meds first?

[Shellc]

Great news let’s hope they get the go ahead for biologics. Can ask what the desensitisation entails and who you saw for this ?