Unstable, uncontrolled asthma and been on every possible inhaler, I'm on xolair also. ANY ONE ON THEOPHYLLINE??

Hello

Just a statement above but I'm 54 and under the respiratory team at hospital as I get my xolair injections there every two weeks.

Not much improvement imo but I asked about uniphyllin or theophylline and consultant declined. I've been on every inhaler on the market, added into this was spiriva - stopped as pressure behind my eyes and they added Seebri which I don't really take as it makes me cough continually. I'm on Montelukast night and wanted Ventolin tablets as I'm taking my Ventolin inhaler about 8 times day and still get breathless.

I then asked about Ventolin tablets which I was on years ago and told they don't use them now.

I wondered if anyone was on uniphyllin and saw an improvement of they like me have chronic unstable asthma.

Thank you

14 Replies

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  • Hi Matti

    I have severe asthma and I have been taking aminophylline for a few years now and I find it very good my asthma cough is much better. It is an old fashioned medicine but some people inculding myself find it very helpful for asthma control.

    Lejaya

  • Hi I've been on this for 35 odd years I take 4 a day along with the montelukast. I also take flixotide serevent and ventolin. I'm 64 and have brittle asthma and have multiable allergies. I hope you get control of your asthma soon. Best wishes. xx

  • e2dye What dose and what type are you on ie theophylline slow release and the dose?? Are they prescribing you this for any COPD or just asthma.? I'm like you all my life, now 54 and its getting worse.

    Are you under a respiratory team or GP prescribing this. I have even bought Ventolin tablets from the Internet and the breathlessness is still there and I now end up with a Tremor which the consultant says is sensitive to Ventolin. I don't think he's the best person, in fact far from it and wish I could take an inhaler 3 times a day and have some level of control back.

    Thank you for responding x

  • Hi I take 225mg slow release 2in morning 2 at night. I took 5 a day for 20yrs until I found out I was taking toxic dose !! They work well for me. I have brittle asthma ,fibro, arthritis ,type 2 and a piturity gland tumour ( benign ). I have a lot of allergies and I have to be careful. Only see my GP. Don't have COPD. xx

  • I forgot to say I can get a tremor when I'm using a lot of ventolin. I would not take any drug off the Internet because it could be anything. xx

  • e2dye, just a quick question from my post on theophylline last week.

    Did you feel your breathing was easier quite quickly, or did it take some time to work. I feel so breathless and no one is doing anything. Saw the respiratory nurse Monday for xolair injections and you sit for 10minutes prior so your rested. She said your breathing is fine when I can't walk up the stairs. GP appnt 29/11.

  • I know what that feels like I've been told so many times that my lungs are ok when I can't walk 10yds !!! It was so long ago that I started them I can't remember how long they took to work. But if I forget to take them I get really wheezy. xx

  • I take the slow realease 225 theophylline to, I take 1 tablet twice a day. Everyones theraputic dose is different mine is quite low.

  • Hi there,

    I'm 23 and have Brittle asthma. I've been in ITU countless times and have been intubated twice. My first intubation was while I was on holiday in America and the doctors were baffled as to why I was only on a ventolin inhaler when I was back in England. Once I got home it all started to fit into place and I was passed from pillar to post, consultant to consultant. No one could help me and actually most doctors were scared to because I was so young and my condition was so rare. Eventually a specialist in London took me under her wing and started me on xolair and it's really helping. But my asthma is so hard to control that I'm on:

    Phylacontin (theophylline) 450mg

    Montelukast 20mg

    Fostair inhaler

    Ipitropium inhaler

    Spiriva respirat inhaler

    prednisolone (usually 45mg)

    3 different types of anti hystomine

    So I'm on quite a lot but the theophylline was a game changer for me at the time. It was actually my local GP that started me on it because he was getting sick of the consultants inaction while I was in ITU nearly every week so he said it was rare to be given the tablets, especially at my age, and actually a lot of specialists don't like giving them unless the situation is crucial. But for him this situation was crucial. I was literally in and out of ITU for a year and I was starting to take its toll on me, especially as I was at university at the time.

    Ironically theophylline can be your best friend but also your worst enemy. I've had two chronic seizures since I've been on them, one almost resulting in death so this is why the medical professionals are sometimes weary to offer them. You have to be very careful and often have your bloods checked to see what your levels are. I personally see the huge difference they have on my health but they do carry risks as I've mentioned above. They are also very expensive for the NHS so they only give them to the worst cases they have.

    Good luck with everything and if you have any more questions please ask me as although I'm only 23 and been through more with my asthma than I think most people have in a lifetime! That comes with being one of the worst cases in the country...I'm famous apparently! Wish I was famous for something else though I must admit...

    Fern

  • Do you need to take Ventolin inhaler with the steroids and 2 bronchodilators.

    Do you take 20mg Montelukast at night as I'm on 10mg and antihistamines too..

    I was on and off steroids all my life and 2 years permanent 2014. I have skin that's seethrough so be careful. I can't understand the ipratropium and spiriva as they are pretty much the same so together??

    I'm desperate and have drawers full of drugs for osteoarthritis, unstable asthma, anxiety and depression AND older people's issues.

    I feel for you at such a young age I was never as bad but do seem to be getting worse.

    Big hugs xxxx 😊

  • Hi!

    I have quite uncontrolled severe asthma that my consultant describes as brittle with 5 hospital admissions in the last few months, most of these through resus to the respiratory ward.

    Currently I'm waiting for Xolair funding to be approved but I take:

    50mg pred

    Relvar 182

    Spiriva respimat

    Montelukast

    20mg cetirizine (he feels my asthma is the allergic sort)

    Uniphylline 400mg twice a day - this is an increasing dose I started on 200 and is likely to go up again? Also been on the aminophylline IV during hospital admissions. It does make me vomit through so finding the level is quite hard.

    Salbutamol - I take 4 puffs through a spacer 5 times a day whether I need it or not to try and prevent dips which my consultant says isn't his usual advice but needs must.

    Touch wood it's been almost 2 weeks since my last hospital admission so I'm hoping to stay out and make it to the OUT patients instead of being stuck as an in patient again.

    I think the uniphyllin definitely has helped! My asthma isn't controlled yet and I'm still wheezy and tight chested a lot BUT compared to before it's far better especially as the dose has gone up :)

  • Thankyou to all your replies, I'm on xolair 2.5 yrs due to lots of allergies and it's not helping imo. I get told think how you'd be without it, like a fear tactic. My consultant said to move to Mars to avoid everything - be is a complete idiot.

    I have been on the serevent and flixotide and flutiform and seretide at max dose. I was on 40mg Prednisolone for 2.3 years.

    He says I'm much better when I told them I was coughing up blood told by respiratory nurse not to worry. GP did xray and consultant saw it and said I had pneumonia. I'm a nurse myself and have done everything to control it to stop going into hospital. I was given aminophylline as a child years ago and think why can he try me on this. It's like he is set in the belief is all allergy related when it's bothy allergy and brittle, unstable. Thankyou for telling me what you are all prescribed. I see the nurse on Monday for xolair injections and I'm going to mention it again but they don't listen to me.

    The only other option is every time I'm breathless coughing blood or brown phlegm get an ambulance. They also found I had Aspergillus but now it's just sensitive.

    Thank you all so very much and hope your breathing and symptoms are livable with so to say xxxxxx❤️💞 only the people that have this understand. I too have severe arthritis and depression. Xxx

  • Thankyou to each of you and to those starting on Xolair I'm on 600mg maximum dose and Ige was 1,845. I really hope that it works for you. I'm thinking of stopping it but then I'm afraid if I get worse than I am now.

    If xolair works before I started it I read some people came off steroids and I was so excited but sadly not for me. I take several antihistamines and big hugs to all of you xxx

  • Ah, you've really been through it, so sorry. I've taken Theophylline for about 35 years and it does help. It's old fashioned but works for me. My 19 yr old son also takes it daily and finds it very effective. Hope things improve for you.