Tertiary Specialist Appointment - outcome

[floating_]

Well! The long-awaited appointment happened!

Out come was basically, need blood tests (done!) and waiting for ENT. He said he's not sure why I'm not responding enough to oral steroids and that I don't have the inflammation typically associated with asthma (eosinophils I'm guessing, probably spelt that wrong lol). Although he did say steroids would mask this anyway. He's also unsure why I tend to be worse in the evening whereas most asthmatics are worse in the morning. Of course I have to be different. He also wants to rule out some stuff to make sure it's asthma (not something else), so not sure what else there is to rule out to be fair, apart from maybe VCD, but I think that would be in addition to the asthma, not in place of it. Any ideas? He is in agreement that the mast cell issues I have aren't helping the situation either regardless of what it is.

Regarding the Xolair, if my "asthma" continues to improve with it he will keep me on it even if my IgE levels aren't what they expect for it, which is music to my ears to be perfectly honest, because for urticaria it's only (usually) for 6 month stints. Have to be weird, don't I?

Basically I'm a unicorn I think?

He also wasn't impressed with my local A&E with regards to my puking episodes and being steroid dependent, was very glad I have a medical alert bracelet though (was told to get it by my asthma nurse).

And! Told me to get my booster, even though he is aware of the autoimmunity issue I had with the Pfizer jab, says it's more important as COVID for me would be bad (for reasons outside of the asthma).

Hope you're all well.

[djbctla]

Hi Floating I was reading your post, very interesting and informative. My heart goes out to you. From what you have said being positive looking for solutions is your way. Good on you.

I know u have urticiaria, but it might help if u make sure to use non bio washing powder and also use non perfumed hand/shower soaps.

I know it’s not seborrhoea dermatitis

(my husband had this we changed to non bio washing powder and it helped enormously)

but it’s worth a try. Help one problem perhaps anyway.

Sorry for long post.

Best of luck Bernardine

[floating_ in reply to djbctla]

Thanks and my mum already does use non bio powder, anything else breaks me out in hives and swelling. I can't use perfumed soaps either because eczema and can trigger off my MCAS.

Thank you though!

[Poobah]

Sometimes patient's symptoms can be a puzzle to the experts, but at least this consultant is thinking outside the box. As for what ENT can look for, this article is very informative, if a bit technical, but the introduction lists conditions that exacerbate asthma: err.ersjournals.com/content...

Good luck!

[floating_ in reply to Poobah]

For sure, although I think I've already stumped him with my issues. I personally think there's more going on outside of the asthma (although I do think it is asthma), he specifically mentioned nasal polyps, not sure what they are though. Other doctors have mentioned VCD. Have already been evaluated for sleep apnoea and I don't think I have that or my sleep specialist would've said by now (they initially thought I had central sleep apnoea, not obstructive).

[Poobah in reply to floating_]

Urgh, polyps! I'm a polyp person and having them in your sinuses is a real pain as they can take over and grow, block and cause no end of breathing problems, plus you can lose your sense of smell. A polyp is a nodule or growth, soft and benign. They can be a sign of AERD (aspirin exacerbated respiratory disease) and if you do have this then the ENT specialist will be the one to diagnose it.

If AERD is diagnosed then changes to your meds and diet can deal with the condition and this will also be a benefit to your asthma - in AERD the asthma will also respond well to these changes.

But VCD can also be as problematic as AERD for an asthmatic and getting diagnosed is a challenge as most referrals end at the respiratory clinic. But I'm very happy to hear that you have an ENT referral as these conditions can at least be diagnosed or ruled out by the specialist and targeted treatment begun, if necessary.

Keep us posted.