Hi finally had my Consultant review after having the obligatory lung function tests again.. though this time it was more thorough....apparently he couldn't determine much from the tests (big shocker there... they never have had much info from the results)... but they did pick up on the Bronchiectasis which they got from the MRI I had months ago... its quite mild but it covers a big area mostly the bottom half of my lungs...he said since I have had asthma for a long time, it is affecting the tubes so it is harder to get rid of infections and in fact I have been getting a lot of infections over the past few months...he said this was expected... I was on 5mg of Prednisolone a couple of years ago.. but when I changed consultants about a year ago, he took me off them... my previous Consultant was going to put me on Xolair, but this one wasn't sure it would work for me.. now he is thinking about whether to put me on it after all... basically I am on the highest dose of all I can take medicine wise, so there isn't a lot else he can do for me... nothing seems to be working anymore....has anyone else come to this point?.. I am so sick of getting chest infection after chest infection.. I try to avoid going into hospital as I am my daughters carer and there isn't really anyone else to take care of her... so I am a bit scared....I am going to be going to physio about coughing up phlegm more (which I hate doing anyway)...sorry for the long post....had asthma for over 40 years now... and it has gotten a lot worse since I had my kids...my boyfriend has been amazing and been very supportive..and I am struggling going to work every day as I cough and wheeze practically the whole time (I am an early morning cleaner) I have now applied for PIP.. which I hummed and Hahed about doing.. but so many people said to go for it, so I did... probably won't get anything.. has anyone else applied for this? (I also have Osteoarthritis in my hips, knees, neck and hands)....sorry just moaning to myself...just good to get it out I spose lol.... sorry for the novel....
Asthma Consultant review: Hi finally... - Asthma Community ...
Asthma Consultant review
Poor you. Sometimes a good moan helps! I sympathize. I do daily PHYSIO and whilst I hate coughing junk up by going at it first thing I find I'm less likely to need to cough when out and about
Get them to check your immune levels - I have asthma for a long time on max meds too and because of long term Steriods use it has destroyed my immune system so I now have treatment for this too which helps stave off the infections
I was given jabs not too long ago to help my immune system.. MENB and another one they give to children lol..... I try to stay away from people with colds and flu.. but its near enough impossible.... I keep having to explain to people why I can't go near people with colds etc, but don't think people understand how it affects more me than them..."Oh you'll be fine I won't cough on you!" etc...so then I don't go out as often... its especially bad in winter...ughhh asthma sucks!
It certainly does , I have to have artificial immnuoglobulin treatment which is organised by a specialist hospital so it might be with you asking you chest consultant / GP about IT ! I am now registered disabled because of my asthma and it puts severe limitations on my daily life - but hey ho - asthma does suck !!!!!
I have applied for PIP as recommended by my Dr and a few friends...didn't want to before as I didn't think it was that bad... but as you say it does affect my daily life.. so no harm in trying...if I could just get a blue badge would make my life a lot easier, as it means I can park closer to places in the city at night... instead of having to walk for a bit all uphill when my asthma is bad so I dont even bother going...
I've had asthma for over 40 years too. Mine has got worse over the past 5 or 6 years. More infections which are more difficult to shift each time and taking more/higher meds to do so. It's scary isn't it? 😦
I haven't seen a consultant or been offered a referral in 5 years!!! So I have now insisted on seeing a respiratory specialist.
wow! never seen an asthma consultant in 5 years?....I have seen a few... they keep changing their minds about me... my asthma is a bit weird and changeable lol...a lot can change in 5 years....I can't go any higher with meds apparently but next stage I am not there yet, so am kinda on the border with changing meds again.... we will see how I am when I see him again in about 2 months.... hope you get referred soon.. here it takes a while for a referral to go through unless you were in hospital and need an urgent referral.... good luck!
Hi Alliecat
Yes...the last referral was following a hospital admission. Consultant I saw was pretty useless! Basically just advised me at what stage to start the rescue packs of antibiotics and steroids they started providing after being admitted. Have been to hospital several times since but never re-referrex so this time, as my husband and I are fed up of the same old cycle, I asked to be referred to a specialist out of city. GP did agree abd have had appt for Oct which I am trying to bring forward.
Never had lung function tests.....never been told what type of asthma I have. So you can understand our frustration!! Apart from being on preventers and nasal spray, treatment is a always reactive to an infection never really listened to apart from the lovely nurse at our GP surgery.....so something has to change!
I had that for a long time...not being referred no action plan etc... but after talking to my GP asking for a referral.. think they finally listened after a few hospital admissions...and gave me a nebuliser for home.. which helped a LOT!.... had one Consultant... then changed to another, and now I have another lol... they have all changed my meds and every time I had to have a lung function test... and every time it didn't give much information about my asthma.. so it was a waste of time really... MRI gave some indication when they found Bronchostaxis or however you spell it...which meant I am prone to infection (BIG shocker there lol).... hope they get you sorted quickly... think you definitely need to be seen.. can't believe you have never had a lung function test before... that is bad on them!....though it might not tell them much as with me...
My GP did arrange a nebuliser for home after my first hospital admission, which has def helped an awful lot.
Hopefully this coming appointment will give us some much needed answers.
Thanks for listening ☺
If you are feeling uncomfortable with the consultant and the care you are receiving, you are entitled to ask for a second opinion.
I hope you get sorted
I have had asthma since childhood and now COPD. This year has not been great and wonder if this is the same for others as well. Maybe more pollution or just getting older :/. I heard Xolair was a new treatment still feeling its way I think. My consultant mentioned it as well. Good luck with the PIP !!!
Thanks.. funnily enough when I spoke to my GP before waiting to see the Consultant (he had cancelled the last appointment to illness on his part).. and the Dr mentioned a letter he got from the consultant which mentioned COPD, yet the consultant didn't say anything about it...I forgot to ask him about it while I was there...
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