Theophylline advice/alternatives

Hi everyone

So 2 weeks ago my resp consultant put me on uniphyllin 200mg after my 2nd life-threatening attack and hospitalisation in 3 weeks, and it seemed to really help (managed to maintain PF in my green zone for 3 days with very limited use of ventolin- a first for over 3 months!!!) however 3 days ago started to get really bad side effects (nausea/vomiting, dizziness, blurred vision, shakiness etc) and my GP took me off again. Since then my asthma's worsened again and I'm now back to maintaining PF in my yellow zone, with all the usual asthma symptoms. I'm taking all my meds (fostair 200/6, spiriva, montelukast, prednisolone 30mg [tailing off 5mg weekly], ventolin, fexofenadine, carbocisteine and adcal-d3), and I feel like it's worsening again with the vent lasting less/needing more puffs to resolve symptoms.

Has anyone else been in this situation, and if so what happened and do you have any advice? Did the hospital put you back on at a lower dose of theophylline, or did they change brands? I'm back at the hospital in 10 days with the asthma nurses there, so if anyone has any idea/advice that I could take with me it would be great ☺.

I have my university finals coming up in the next few weeks and I'm meant to graduate in 10 weeks, however with how bad things have been recently this is looking uncertain, so I'm currently very frustrated/stressed over everything going wrong right now and defo don't want another week in hospital! I am currently waiting for an appointment at Royal Brompton but I doubt that'll come through before my exams (and defo won't start the Xolair injections they're sending me for before they're over!!!) so any other advice for a severe asthmatic just trying to gain control back would be much appreciated too!!!

Thanks a lot everyone

17 Replies

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  • I had a dreadful reaction to aminophylln, (a different brand to uniphylln) a debilitating constant headache for the month I took it. I stopped taking it. And was reluctant to try another brand.

    However dosage is really important in taking Theophylline. Did they do blood tests to check the levels? Apparently different people have different uptake of the drug, and it may be that you would be able to tolerate a different brand at a lower dose. If you have finals coming up, I would go back to your GP and try a lower dose and different brand and get the blood tests done approximately 5 days after you start. A lot of gps are very reluctant to use Theophylline because it is an old fashioned drug and can have bad side effects but apparently the therapeutic level that you need in your blood to work is very narrow , too little and it has no effect too much and the side effects are dreadful, which makes it tricky to get right as people have a variable uptake. Also both alcohol and coffee can affect the levels and side effects. As can any caffeine based products. So using Theophylline and pro plus/ espressos to get revision done would be a no no 😊 You also should have regular blood tests .

    If you get no help from your GP I would ring up your hospital consultant's secretary explain the problem i.e. Needing to stay well for finals. and try and get a clinic appointment.

    There are lots of people here who use Theophylline so I hope you get some good advice. Good luck with your exams.

    R

  • Thank you for the reply! I had a blood test about 2/3 hours before I started to get symptoms πŸ™„, which was 9/10 days after I started on the uniphyllin (Easter got in the way of the 5 day thing!!!) however never got the results back and because I got taken off of the pills the next day I didn't think to ask! I do think I'm going to go back to see a different GP in the week (didn't see my usual as he was absent) and ask him because I'm now back to waking up twice in the night to take my pump - again not helpful for studying!

    Thanks for the warning about caffeine/alcohol (unluckily alcohol triggers my asthma anyway so usually avoid it, but it does mean I can't use the greatest study tool in the world - red bull!!! πŸ˜…). GP had warned me to avoid them and to report side effects asap (after the consultant gave me no info/warnings about the drug just asked for bloods πŸ™„) which did lead to a lot of research on my end.

    Will take your advice about ringing the hospital if the GP is no good tho

    X

  • hi I take aminophylline I have been taking it for 3 years and I only need to take one 225mg tablet twice daily for it to be effective which is quite a low dose.

    everyone's therapeutic levels are different and it might just be that you need a lower dose and if it seemed to be helping it's definitely worth speaking to your gp or hospital

    I find aminophylline very good and has helped loads with my symptoms

    lejaya

  • Thank you for the reply! Definitely think I will go back cause I did so well the 9/10 days I was on it and I'm now getting asthma symptoms in the night again 2 days after I came off it πŸ˜’. Fingerscrossed that a different brand/lower dose will stop the side effects!

    X

  • I take 450mg twice a day of phyllocontin and have done for about 30 years. I was told that it works on a toxic level so you do need testing to see how much you need to take. Good luck with your graduation

  • Thank you for the reply! I had a blood test about 2/3 hours before I started to get symptoms πŸ™„, but no results yet. May ask about a different brand and see what they say! Thank you πŸ€žπŸ‘©πŸ»β€πŸŽ“

  • I would also recommend asking for a blood test if you haven't already had it done. I have been on uniphyllin for years and am regularly tested as my cons likes it to be at a low therapeutic level. I also built up the dose initially. I do find some GPs don't like it but it has really helped to decrease admissions.

  • Thank you for the reply! I had a blood test about 2/3 hours before I started to get symptoms πŸ™„, which was 9/10 days after I started on the uniphyllin (Easter got in the way of the 5 day thing!!!) however never got the results back and because I got taken off of the pills the next day I didn't think to ask! Will go back to see a different GP this week and see what they say! 🀞

  • Hi I am sorry to hear you have been having such a stressful time. Is your university tutor aware of the situation and how it affects your ability to study?

  • Yes - I'm studying osteopathy so most of my tutors/lectures have some medical training/understanding and are really supportive (I've had them run me down to a&e and last week they walked with me to the docs when the side effects of the theophylline kicked in in the middle of lecture 😳) They've all told me that if I need help catching up on anything I've missed then they are happy to help me.

    Admin on the other hand are almost over the top and restrictive to the point where I haven't told them any over my issues since last November. I had a cold and consequently a minor attack (2-3hrs in a&e before release), and they responded by banning me from site (no clinic/lectures/library use) for 5(!) weeks whilst waiting for my resp consultant and my named GP (who I never see as she only does once a week) to write letters saying I am ok to study (this all kicked off after I got over my cold too... I was NOT impressed). Yes I had a bad year last year and had to repeat (spent more time at hospital/out sick when I did at uni) but I felt that this response was well out of line.

    I've also had to put up with them telling me to 'take my condition seriously' and that they 'didn't want me to die on site' because they know someone who knows someone who died from an asthma attack. I was fuming at this - yes I try and get on with life, and I take each day as it comes with a smile, but that does not mean I'm not taking it seriously it's just thats how I cope and I try not to focus my life around the fact that the local a&e department now know me by face/name/cough because I have been there so often. They wouldn't tell an cancer patient that they knew someone who died from the same cancer, so why is it acceptable with asthma?

    I'm now at the point where the tutors I trust are aware how bad I am/have been since November (4/5 a&e trips, 3 admissions, weekly nebulisers at the GP for 2/3 months and Prednisolone for just as long) whilst admin only know about the last admission cause I was in so long I couldn't hide it from them. I've had to fight to do an exam because 3 weeks prior to it they told me not to because they 'didn't want me to fail it' (told me the day before a different exam - great timing there πŸ˜’) without speak to any of my tutors who then backed me up - they 'let' me do it and I passed with 60% (a good score at my uni) having been in a&e 3 days prior!

    I'm sorry for the rant! I'm really frustrated with everything at the moment especially cause I'm getting bad again, and I'm stressing over finals and the fact I can't revise properly! I really want to graduate with my year group and I almost feel like admin wants me to fail and do my exams at the end of the summer - I have I tutors telling me I can do it and I'm good enough to graduate now and admin telling me I'll fail if I do my exams with everyone else (they don't seem to understand that stress is a trigger, which will be present no matter when I do my exams!)

    My friends (and most of my year group) know where I'm at, when I'm bad and that we are keeping it from certain members of staff which has lead to some amusing situations, but on a safety point of view all my friends know how I'm doing, where I keep my emergency meds and my go bag etc, although some of them don't understand how tiring it is most of them try, even though we are all as stressed as each other over finals!

    Ahhh!!!! πŸ˜€πŸ˜©πŸ˜“ (again apologies for the rant!!!) πŸ˜… X

  • Hi what a stressful time you are having. However it sounds like you have very supportive subject tutors and lecturers who also have confidence in you. While it is frustrating to be suffering with your health when you just want to be preparing for exams, all you can do is your best in the circumstances and try to de-stress too. All the very best with your exams and I hope you feel a lot better soon.

  • Thank you 😊

  • I am exactly like you and on the 200mg uniphyllin started coughing all day and have tried it twice with the same result so believe I'm allergic to it. So it's stopped, even tried spiriva respimat but again coughing but after a CT scan showed scarring and some patches of collapse.

    I was on xolair for 3 years and now regret stopping it but there is bronchial thermoplasty done in the US which I'm going to ask about.

    I am not getting much past 250 peak flow daily and feel I'm in a downward spiral with my breathing.

    Less than 2 years ago I was working as a psyche nurse for 30 yrs and now struggle to walk up and downstairs.

    Good luck hun, I hear Brompton is really good. I'm gonna ask for RVI Newcastle or James Cook Middlesbrough as larger hospitals maybe have better treatments 😊

  • Thank you 😊! πŸ˜• sounds like you've been through the wringer! I'm lucky enough to have a great best PF (630) so I have a long way to fall before I feel really bad, although I can understand how frustrating/depressing asthma flare ups can be (6 years ago was a national level trampolinist/tumbler [floor gymnast] and now I can't walk 300m uphill without needing my vent 😣)

    I hope that you find the right treatment for you (which you don't react too 😜) and get a hospital that has the treatment you want!

    As a matter of interest why did you come off Xolair? Bad reaction/no reaction or something else? I just want to be as prepared as possible before potential starting it. If you don't want to go into it though I completely understand! 😁 X

  • I only came off xolair as I was on the maximum dose of 600mg which was 4 injections every 2 weeks. I felt my asthma was not improving, still getting infections, needing still Prednisolone regularly after they had me on it for 2.5 years to try and lower my Ige.

    I was skeptical and one nurse kept saying it's better yet when I stopped it the senior asthma matron said she thought I'd made the right decision as people who it works for have been able to reduce inhalers etc and come off them.

    I regret it now purely as I didn't know it was controlling my urticaria which is back with a vengeance tbh so unknowingly it helped my skin condition.

    Apparent the guidance is you have to have tried every possible oral medication and inhalers to even be considered for it now.

    So yes I wish I hadn't stopped it and my asthma had become worse still.

  • Ah! Thanks for letting me know - it's now given as a 6 month trial and if your symptoms don't improve they take you off of it!

    I'm sorry you don't have the option to go back onto it now even if it didn't do too much for your breathing πŸ˜•

  • Hi guys thanks for all your support/advice on this matter

    Just come back from seeing my usual GP who discovered that the HCA that took my blood DIDN'T send it to be tested for theophylline levels 😑! Due to this, and the fact I showed several signs of theophylline toxicity he didn't feel comfortable re-prescribing it or trying an alternative (he said his knowledge of the drug wasn't good enough for him to know the best alternatives esp. as he doesn't have a baseline level of theophylline to go from) until I've been seen/got advice from the resp nurse at the hospital if not my consultant.

    He was fuming (and obs taking it out on the keyboard) because of this error and is going to have words with the person who took my blood.

    Because I also reduced my pred 5mg on the day I stopped the theophylline he said he can't completely rule out attributing my worsening symptoms to the reduction in pred, though he does think it's theophylline related.

    Currently sitting at home on a neb (he diagnosed a moderate attack - more worrying is that I'm not feeling like I'm that bad ATM and was defo worse than I am now over the weekend 😨) With the advice that if I drop into red zone PF (currently just above it) in the next 4 hrs to go to a&e.

    Not amused with my lungs πŸ˜’ but 🀞for staying out of hospital until my scheduled appt next week

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