Phyllocontin

[sunshineday]

Is anyone else having problems obtaining Phyllocontin? Hubby has been on this for years and years for his lung problems and it's really helped, but this month and last month very difficult to get. I rang 6 pharmacies before I could obtain them yesterday. Seems the manufacturer has made a 'commercial decision' to discontinue production. As this was originally prescribed by a consultant (long since retired) I thought I'll contact current consultant (who's usually really good) and check what should be prescribed instead. The advice I was passed was that it's up to the GP but one option is Theophylline. Is anyone else struggling to source Phyllocontin and had a replacement med. Thanks for any comments or thoughts on this, I'll perhaps contact the Lung advice line. Joy

[madonbrew]

Hi, I think that they have discontinued the production of it, but have moved people to a tablet called uniphyllin. I have been swapped over for at least 6 months now and haven't had any problems with the change. I hope it gets sorted for your husband soon!!

[sunshineday in reply to madonbrew]

Thanks madonbrew, hopefully the surgery will get back to me this week.

[AsthmaandLung Administrator in reply to sunshineday]

Hello sunshineday

Give us a call if you would like to have a chat with our Clinical Team. They may have some information to share or can talk to you about alternative treatments.

0300 222 5800 Mon-Frid 9.15 -5pm

Best wishes

[sunshineday in reply to AsthmaandLung]

Thank you, I think I will probably give you a call. Joy

[Patk1]

It stopped production 2or3 yrs ago.ive b on uniphyllin since then

[sunshineday in reply to Patk1]

Thanks Patk1, that's the same as madonbrew. It's really helpful to know what lungies are being prescribed. Joy

[Toria2]

Hi I was same devestated when it was discontinue but they put me on uniphyllin took a couple of month to feel better but now I’m great starts at 200 ml to 400ml hope that helps cause I couldn’t of managed on nothing

[sunshineday in reply to Toria2]

Thanks Toria2, that's another tick for uniphyllin so I guess that's most likely what our surgery will prescribe. So pleased that it's helping you now. Joy

[montgomery72]

Hello there.. This 'commercial decision' seems to have a long time in the making. My mother was no longer supplied with Phyllocontin over 28 months ago.having successfully used it for many years. . Tragically it had devastating consequences for her as the proper/decent process of support/movement to a sustainable drug was not there for her. I tried to draw attention to the issue shortly after.. but not too many people listening because of Covid climate. From her and our family's experience I would strongly advise you if anything to ensure that a proper proactive up to date active care plan is in in place to manage your husband's care. Very best wishes.. Adrian

[sunshineday]

Thanks Adrian, so sorry to hear of your mother's terrible experiences when her Phyllocontin was stopped. I hope our surgery is more on the ball as this med is really important to my husband. He has enough to last until the end of October and I sent a Klinik form to the practice over the weekend. They are usually pretty good and get back to you within 4 days maximum. (Last week on a separate issue they got back to us within an hour and Clifford saw his GP within 3 hours). If I don't hear by Thursday I'll chase. Other than this Phyllocontin blip all his other meds are always available as well as rescue packs and his consultant had told us to phone him if needed before his next booked appt so fingers crossed there's no complications with this. Best wishes to you, Joy

[kslack]

I had been told it lost its licence in 2021!, I was perscribed uniphyllin although I had to adjust the dose as it’s not quite the same thing . I have been fine on them. I was perscribed the others since I was 10 and was dreading not getting them. But as I say once you get the dose right they are exactly the same

[sunshineday in reply to kslack]

Thank you kslack, that's very reassuring as the others who have responded have been prescribed the same as you. Glad it suits you. Joy

[Corinne-Amy]

Same here. I was on Phyllocontin for over 40 years and was moved over to Uniphyllin about four years ago. The dosage isn’t like for like, so I needed a couple of blood tests to get my levels within the right parameters but other than that, I haven’t noticed any difference at all.

[sunshineday in reply to Corinne-Amy]

Thanks Corinne-Amy, looks like uniphyllin is the go-to med to replace Phyllocontin. Seems as well that we'll have to monitor hubby's reactions and bloods but once the dosage is at the right level it works ok. Joy