I've just had a follow up appointment with my consultant and was wondering if anyone can share some experiences - He's asked me to start Theopylline tablets then have some bloods done whilst trying to reduce on Prednisolone (currently been on 40mg a day for three months - every time i've tried to taper my peak flow has dropped and got incredibly wheezy so GP tells me to go back to 40mg). Has anyone got any experiences of Theopylline - did it make a difference or at least help get them off of Pred??
He's mentioned also he'd like to begin Xolair treatment once I've had the blood test done for Theophylline. Has anyone else been on Xolair and can share some experiences of it? Has it been beneficial in gaining control of your asthma? Also are they painful? I've got a phobia of needles so i'm really not looking forward to starting this but if it helps me breathe I will try anything!
Many thanks!!
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AlannahK
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I started on theophylline tablets last year, and once I learnt to avoid caffeine they really helped me stay out of hospital a bit more (though it kept me on pred, I was able to lower to a maintenance dose of 10mg rather than swinging from 40-20 every few weeks. Unfortunately my body likes to play the absorption races, sometimes is really absorbs and other times it doesn’t so my levels are all over the place from untherapuetic to near toxic on the same dose! 😅
So my advice for theophylline is; know the signs to look for in case of toxicity (nobody want to have a seizure 😅), avoid caffeine (as in creases absorption of the drug) (there are other things to avoid but that is the one that effects me the most), make sure to get blood checks to check your levels (esp if your control starts to worsen after a good improvement) and never let anyone change your brand! (I went from untherapuetic on uniphyllin 200, to toxic on slo-Phyllis 250 in under 2 days and had lots of different side effects!)
Xolair worked well for me (Jan-July this year) however I started to get an allergic response to it so got switched to mepo. The injection feels similar to the flu shot in my opinion, it’s a very small needle which you don’t even see. Dose wise depends on BMI I think, and I always had 3 injections each time. Not that painful - sometimes a bit of a burning sensation, other times pain free!
It was very helpful in getting me through the last few months of uni, and I definitely noticed when I came off of it (went from 1 overnight amission in 6 months, to I think 9 overnighters (in 3 trips) since July/August.
They might scare you with the epipen they’ll give you at the beginning, however anaphylaxis is very rare - I walked away with headaches, tiredness and general muscle aches from the first few injections, which slowly improved as the time went on. Even my allergic reaction to it was just hives and angioedema, and treated by a double dose of antihistamine so...
The hardest part for me was the wait before starting as my local consultant suggested it over a year before I got the xolair as had my care had to be transferred to a resp specialist hosp and they then had to approve it 🙄
Hope that helps, good luck and any other questions fire away x
Thank you so much for the response - you've been so helpful in what felt like a giant brain blur! Thanks so much for the tip re the caffeine also - I have about 6 coffee's a day so that may need to change!
I’d definitely advise being careful on the caffeine like Emma says, but once you’re used to it you might be able to introduce it again - I’m on the max dose of my brand of oral theophylline and have crazy high infusion rates of it if I end up on the IV version but am still able to drink coffee! (Phew!🎉)
I’m just coming towards the end of my 16 week trial on xolair and have noticed a big difference day to day! I’m still getting admitted but I’m responding much faster to treatments and have spent a lot less time in hospital (think I’ve gone from spending nearly a whole month in a four month period in hospital to about 12 days total in the trial period!!) like Emma the biggest issue for me was the wait to get on it!
In terms of the actual injections I’ve had no issues at all. I think I had a slightly sore arm the first couple? But that was it. They’re not very painful either 😁 also not all centres give an epipen - I already have one for allergies but my centre said they don’t normally bother giving them out for xolair patients because they’ve only actually had a couple of allergic type reactions in the 10 years or so they’ve been giving it (and none have been anaphylactic)
That's amazing news! I'm so pleased that Xolair is working for you!
I'd never even heard of Theophylline up until a few days ago but if it's working for people I will try absolutely anything - even if it does mean giving up the coffee!
Thanks for the heads up re the Epi Pen too - saves another reason to panic about something else haha!
Hi. I have been on Theophyline now since January following been on IV form when in hospital. This is the second time on it.... And tbh without I really doubt I would have managed. Like yourself I had to kive on pred.
I am starting Xolair tomorrow so cant comment on that yet, and tbh havent been ficen too much detail.
Our daughter was on it - can’t remember dose - from when she was about six, I think for a couple of years, when it seemed to work less well, and she was changed to a spinhaler. It stopped the endless coughing at night. She is now 35 so it was a while ago.
Iv been on xolair for a long time now I get full nights sleep and my hives have gone. I get two injections each time and they are not to sore at all and Iv had no side affects from this drug so all in all for me it’s been good I’d not like to go back to sleepless nights every night and the constant itching . Hope it works out well for you 🙂
Some peopke think I am mad not worrying about the side effects. But to be honest...better than rasping good bye to your family as the rush you of to ITU.... As a family we have still not recovered from it. So will try anything and out up with anything if i get my life and family back. 😊
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