Joining the dots......

[Madbiker1]

I was diagnosed with eosinophilic asthma in 2017. I had rhinitis and nasal polyps prior to being diagnosed - I was 45 when I was diagnosed.

Unfortunately despite having mepolizumab, benralizumab and omalizumab I have had little relief - eosinophils and FeNo remain high.

To have a normal (ish) life I need 50 mg of steroids a day - out of the question.

After finishing on omalizumab I was uncertain what the hospital could do. I had a call from them yestrday - they want to me to attend a clinic as they are now considering vasculitis as a possibility.

This has been in the back of mind for some time now - I had previously told my consultant I was having pins and needles in my feet - they did conductivity tests but my nerves were deemed to be ok. However recently blisters - large ones - appeared on my feet ( I spent two days walking on the ball of my feet). I have also had joint pain and my neck clicks when I turn my head to the left - I have never had anything like this before. I have headaches - in particular sinus - and my ears always feel like they need cleaning out.

I mentioned to the nurses that after getting a GP appointments ( a story in itself) I had been referred for a colonoscopy and CT scan due to change in bowel habits and weight loss.

The colonoscopy showed no further issues other than diverticulitis which I knew about anyway. I am waiting for the CT results.

I always feel unwell - not just the asthma symptoms. Pred gives me temporary relief. I had done research on vasculitis - my symptoms are similar to EGPA.

It would be nice just to find out what is wrong.

The NHS is not in a good place by the ream that have looked after me have been wonderful.

[livornese]

So sorry to hear about your predicament. It must be hard and frustrating, to say the least. I can't offer any enlightenment, unfortunately - I hope someone else on the forum has more helpful insights and advice. I just wanted to empathise with you with a virtual pat on the back.

[Riff1954]

Hi, might be a good idea to contact the helpful people at Vasculitis UK vasculitis.org.uk/helpline. If you do have Vasculitis it is really important that you are seen by consultants with extensive experience of the condition. The helpline will be able to advise you

[eh66]

Before my diagnosis I ended among other things with blood blisters all over my hands and feet plus what appeared to be conjunctivitis. I would speak to the Vasculitis helpline, and if you do get a diagnosis try to make sure you get an experienced consultant team. It is a bit of postcode lottery.

[MIK65]

I can emphasise entirely with you, as I suffered from all of the symptoms you’ve have outlined for many years before being diagnosed with EGPA in December 2020. The best way I can describe how I felt before diagnosis was wretched. Immediately prior to diagnosis the peripheral neuropathy and joint pain were the main issues but the other symptoms had plagued me for years before the diagnosis joined the dots. The diagnosis was followed by intensive treatments of antibiotics and steroids (I was hospitalised for two weeks). Thereafter followed the cyclophosphamide infusions and the ever decreasing course of steroids. Two years on I’m in remission and on the usual range of medications including Azathioprine. Hopefully you will get this sorted one way or another to a successful outcome.

[Madbiker1]

Thank you for your replies. Asthma alone doesn't make you feel as poorly as I feel. I am thankful I am already under a consultant- I cannot imagine getting a diagnosis nowadays when it is nigh on impossible to see a GP.