Hi, my hubby has severe copd lung function 16% but was not allowed home oxygen because of retaining carbon dioxide. Last August, September, October, I had to call an ambulance as his SATs had gone so low.
Last December he saw his consultant, and he prescribed phyllocontin 225mg one tablet twice a day. Again we asked for an appointment for ambulatory oxygen assessment as it was getting ridiculous calling an ambulance each month.
Consultant agreed to refer him but said he was worried about hubby retaining carbon dioxide.
In February, 2015 he went for the oxygen assessment and it was discovered he was not retaining carbon dioxide. So now hubby has oxygen at home to use as and when necessary and has helped so much. So far, not had to phone for an ambulance as SATS are ok most of the time (drop a bit at times but a bit of oxygen sorts that out.
Might be a coincidence but we wondered if the phyllocontin stopped him retaining carbon dioxide. Anyone experienced this.
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A very interesting qiestion GoCat. As far as I know, Phylocontin is a slo-release broncho-dilator and is prescribed to help keep the airways open. I took ityselg for many years, 2tabs, twice daily, but gave it up eventually as it was thought to be contributing to headaches, I was having, difficulty sleeping and general trembliness. It's not so commonly prescribed these days.
I really am most interested in hearing hpw your husband stopped being a CO2 retainer. Hopefully someone can help.
Hi
I retain c02 but it can go up and down so maybe its just ok for the moment but keep an eye on him and look out for the symptoms. As for the phyllocontin ive been on it for a year and didnt change my c02.
Mandy
I'm a retainer but was still prescribed ambulant oxygen and a concentrator for home...
I'm also a retainer, but was already on oxygen when it was diagnosed - so they didn't take me off it. I was given a Bipap and that brought my CO2 levels down to manageable levels.
It seems to me that if your sats are very low you need the extra oxygen, though obviously if you're a retainer it needs careful monitoring. I hope your husband continues to improve Gocat.
Well a mix max of replies there lol. Still none the wiser. But thanks for your replies.
Argana, hubby was doing so well on one tablet twice a day
he asked the doctor if he could increase it to 2 tabs twice a day to see if it would improve things further. After a blood test, the doctor gave the go ahead for 2 tabs twice a day. Blimey the side effects got really bad. Couldn't sleep, terribly restless. Went down to one tab twice a day again and things settled down.
Yes, those were the side effects that I had too Gocat. I think it could be a case of doctors differing in the case of the retaining/ not retaining saga. Some doctors are very cautious and others more inclined to weigh up the pros and cons and then come to a decision.
But whatever the reason, it's great that he's got the oxygen now and that it's helping him. Good thing you were there to fight his case for him. I hope he continues to do well.
I too am a co2 retainer. I am on I/2 litre oxygen 15 hours daily. My consultant prescribed phyllycontin but it disagreed with me. I was nauseous for three days and unable to eat so I came off them. It is interesting that you say that your husband is no longer a co2 retainer. I did ask for another blood test but nothing came of it. By the way I too have severe COPD.
I am a co2 retainer Iv'e had oxygen 24x7 for 10 years and for the last 5 years a bi-pap this has made a big difference to me.It has stopped the severe headaches ,I also had abscences when I didn't know who or where I was and swollen ankles constantly this has all stopped. My hospital admissions are very few now.
Copd seems to change a lot often for no apparent reason.I was put on aminophyline at first diagnosis.It did,nt seem to have any effect so stopped it.2 years later a different consultant put me back on it and it was like a miracle ,my breathing got a lot easier and I felt much better.That effect soon wore off but I,m still on them.We need to be vigilant with this illness,keep our eye on the ball.D.
I`m on oxygen and have had numerous arterial (ouch!) blood tests whilst in hospital presumably to check that I`m not a CO2 retainer. Being a curious bod I would like to know what symptoms being aCO2 retainer cause and if it`s possible to stop being one like gocats husband, can I become one in the future ? Honestly, wherever would we be without this site ? I`ve been helped so many times especially when i first went onto oxygen. Keep well all, Sheila
I don't think you will ever have that problem. Your CO2 may become higher with exasperation and when you are struggling. But,honestly I don't think you have to worry about that. Take care, Nadine
I have been on phyllocontin for 2 years and have just had it increased to help keep my airways open.
I had several blood tests to make sure that the dose was not toxic to my system these are all having to be carried out again due to the increase and statins that have been added, my GP and consultant both work closely together to monitor my asthma, bronchicectasis and COPD, and together with high blood pressure a whole cocktail of meds are taken, to keep me going.
My O2 only drops when I have a chest infection causing my peak flow to drop well below the 180 mark which is never optimum.Prednisolone really messes with my eyesight so I don't drive or ride my bike when I'm on them
Hi,this is Nadine, anyway the only way to know if you are a Co2 retainer is with an Abg, since I started working as a Respiratory Therapist, most nurses are taught that anyone with COPD should never be put on more than 2L of O2. They always say that they are CO2 retainers. I can't even tell you how many times I had to explain that to them, and they still didn't believe me.
No,not necessarily, it depends upon the person. That is why an ABG is so important, and if a person is struggling due to an exasperation they can have what makes them comfortable, but the pt. will need to be monitored. And usually they are not on higher levels of O2 for long periods of time. That's when the Dr will try BiPap because that will in respiratory language, blow off CO2. Every person is different and should be treated as such! I hope that I have explained this to you and if not, just ask. Take care, Nadine ☺
Also as you know BiPap is only 1 of the treatments that the Dr. may choose. I was just using that as an example. I don't want to mislead anyone. Where I worked that is usually what we used with pt's struggling from high levels of CO2. Hope this helps you out. Nadine 😊
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