I am looking for anyone that is similar or who can offer any advice

Hi All , Looking for some advice please . After 7 ICU admissions and 2 hospital admissions in the last 12 months Im at my wits end .

Currently taking uniphyllin , montelukast , azithromycin , symbicort 400 12 , spiriva , pulmicort or in fact all nebs when hitting bad patches plus xyzal , periactin and dymista . On top of that I am barely off deltacortil for longer then 2 weeks .

Peak flows checked at least twice a day , iGe elevated to house dust mite , pollen , mixed dander . I feel very fobbed off by consultant not doing more . Sick of having no life and brittle asthma. Only diagnosed asthmatic and rhinitis 3 years. Am I over reacting or should I be seeking a second opinion ?

17 Replies

  • You poor thing, I'm not surprised that you must be feeling so fed up.

    It might be a good idea to get a second opinion.

    Good luck and I hope you start to feel better soon.

  • I would ask for a second opinion... talk to your consultant again and tell him how you feel... then tell him that you want to see a different consultant if he fobs you off again....I have seen 3 consultants and all have their own way of dealing with asthma, so maybe you just need a new perspective...have you had a Spirometry test lately? if not ask for one.. can give more information about how your asthma is... good luck x

  • Hi to you both and thank you for your messages .

    The last pulmonary testing was 10 months so I presume their will be more by Christmas .

    I will ask my GP for a referal as I feel the cons fobs me off no end

  • Awful that ur asthma is not properly controlled. I wud definately look for second opinion from different consultant. Do u hav care plans and energency steriods at home. Demand better care. Speak to your gp or write a letter to them. In n ireland i heard there was an asthma clinic in city hospital for poor controlled asthma. I wrote to my consultant and asked him to refer me to this clinic since medications doesnt stop flare ups. He agreed and has referred me. I wasnt aware of this clinic just heard about it from a friend. Also had to ask cud i get referred to pulmonary rehabilitation class which i found very good. Message here i had to find about all these things myself and had to ask to get to them ..i wish gp and consultantsvwud justgive us all the help and referrals to improve our asthma. I hope u get proper help from the experts. Wishing u good health.

  • Heya , i have a very good emergency home care plan created by resp nurses and steroids and antibiotics for flare . Steroids are deltacortril 40mg x3 days and then reduce by 5 mg every 3 days .

    However the hospital one is changeable depending on my condition . Just last week i had rib pain so was placed on a bed which was suspected pleurisy at first but feeling absolutely fine then about 6 hours later I was so tight ,wheeze no sentences and pulse / resp very high to start with so they whisked me to resus , tried to stabilise and then ICU.

    So yeah I am not sure but my GP has the letter written so will ring either tomorow or wednesday to see will I be accepted . No quality of life at the moment

  • So sorry yo hear u suffer this much.

  • Sorry just another question what is pulmonary rehabilitation classes ?

  • Pulmonary rehab is where a group of nurses and a group of peoplecwith breathing problems meet in the hospital. We meet for a few hours twice a week for a few months. We fill in health questionnaire and are assessed before being accepted on the course. Course involves patient education, exercise training, teach breathing techniques , psychologist talk on how we feel and how to think about our illness., to encourage positive thinking.nurses monitor our pulse and oxygen saturations before and after exercises (which are very light exercises). Great help and being with people who hav similar health problems meant we cud talk about problems and they understood. Gp has to make a referral for pulmonary rehab. Hope this answers yr question. They also demonstrate inhaler technique and talk about medication.

  • I had been fobbed off by same consultant at my local hospital for years and have always had very difficult to control asthma. It has got worse over last few years and cannot get off steroid tablets, nebs etc. Got referred back to local hosptial but saw different consultant and she immediately referred me to the Royal Brompton who have been great. Not sure where you live but they seem to see patients from all over the Uk and I have recently started Xolair injections as, like you, have allergic asthma. No guarantee they will work but anything is worth trying. Definately ask to be referred.

  • I an in Ireland so hoping for Tallaght or Belfast at this stage . GP referal is for private consultant in Dublin .

    Just need to stand up for myself a bit more now

  • suzdil: Hello, well, probably you are not over reacting, just sick of the same thing and/or not knowing what to do next. I can tell you about my experience. I am a martial artist and one afternoon, while jogging, I suffered THE serious cough attack that made me think this was something else, I felt as if my teeth were pulled by some kind of pliers from their very root. I went to my doctor and she prescribed me the usual ventolin "solution".

    That was four years ago. After that first year I had to see a private allergist -I have my revision this Wednesday, by the way- and he prescribed me lots of medicines, some of them were substituted by others in consecutive visits since they did no good to me. I am taking montelukast, spiriva and others, just like you, with the same name -I am writing from Spain, taking my treatment in Spain-. Thing is I was desperate -I recall 2014-2015 as the worst years in my life, especially THAT Winter- because I simply couldn't sleep at night; yes, all those years because caughing didn't allow me. The allergist told me coughing actually was good because that meant phlegm was thrown out; although that was a real pain in the a... err lung it was right. Actually some elite Spanish athletes -cyclist, footballer- suffered from asthma as well and they followed their treatment and competed when the season was alright with them. After three years of real treatment I am much better now, I can run and jump. A second or tenth opinion won't hurt anybody, by the way.

    I hope you didn't bore much after this but the moral is never surrender and of course if you need to go to a private/pay profesional don't hesitate to do it. We are not rich at all in my family but remember health goes first. At least, me myself am very strict regarding that. And, oh, I am also taking a monthly jab, is a vaccination against pollen and another one against mites, which I am attending this very afternoon. You could ask for information regarding these vaccinations. I wish you well. Patience. :-)

    PS: Did you know that going to the beach is good for our lungs? Iodine in that environment does good to us. If you live inland you could take a weekend escape. Regards.

  • I think a trip to the beach is defo in order when I am stable . Good for the body and the mind :-)

    Do u find your asthma is weather dependent ?

  • Professionals tell us that weather conditions us regarding asthma. Obviously, whether it is someone smoking around or a dusty environment we suffer, while the air is clean we are OK. Not everybody is the same, though, but depending on the season we are supposed to be better or worse. Theoretically, Autumn and Spring are "our" worst ones. I particularly am better during Summer since there are not so many flowers blooming while in Winter rain cleans the athmosphere. I mentioned the sea because of the iodine that enviornment contains which does us good. At least is in the letter the allergist gave me, and I have to say it's true, I have carried out "the experiment". Definitely is good for the body and the mind. I wish you have a good night.

  • Last year i was put on uniphyllin and two days after taking it i woke up from my sleep with my heart beating very fast. I wentvto a and e and they said it was a side effect of this tablet so i had to stop taking it. I am not saying this cud happen to u but just making u aware about it.

  • My doctor tells me the tachycardia is alright - usually can sleep through the palpitations and rapid heart rate when not in episode so will plow on for now . Heart usually beats around 110-120 per minute :-) thank you though

  • Thank you all for the advice . I got my second opinion this morning and I will be a candidate for both zolair and anti IL5 (when release) as I have both elevated IgE and eosinophil.

    Defo worth the second set of eyes and paying private today

  • Have you tried giving up dairy products? I had moderate to severe asthma for 50 years, worked for me

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