Phyllocontin my story

[Brandi_pilot]

Hi Jim here,

Basically I’m 50 and was on Phyllocontin from about 10 years old and my asthma was completely controlled. About 10 years ago I was told it couldn’t be prescribed this anymore, and got the ‘there are better inhalers lecture’ ‘you shalt see asthma nurse’ thing. Ever since then my asthma has been terrible for 8-10 years. Whilst cleaning my office found a strip of yup Phyllocontin which expired in 2014. Thought I’ll try one. Asthma revolution over night!

So told surgery that I’ve taken out of date meds and peek flow has gone from 285 to 480 after taking said meds. Doc called me within 20 minutes and gave me Uniphyllin. Now they are saying I don’t need it heeeeeeeellllllllo! It’s brilliant. Am furious at doctors as have never offered anything apart from junk inhalers.

I have found a supplier of Uniphyllin online as guessed I would end up at war with useless asthma nurses! Within 24hrs it’s in the post.

This isn’t just one surgery as moved about 5 years ago.

I don’t want to sound conspiracy oriented but check this out…

Stuff I’m putting myself back on:

Uniphyllin 200 mg x 56 £20

Ventolin £9

Result basically completely controls asthma just need a ventolin in morning’s.

Stuff asthma nurse has me on:

Spiriva £49.99

Sereflo £30.49

Montelukast £13 ish

Ventolin £9

Result very bad asthma mornings hell going through ventolin having to go through a drilling from asthma nurse for using too much to the point I have been buying ventolin online.

long and short of it I believe it’s all about the money. Feel free look it up! Approximately 1/5 of a Gp salery is from pharmaceutical companies.

GP’s mainly asthma nurses have basically screwed up 10 years for me. Also gps get paid a considerable amount to have an asthma nurse!

An asthma nurse has never helped me ever without question. I am really open to comments on this!!!

soz for rant!

[Hidden]

It is a disgrace that these so called 'respiratory nurses' don't get the right training and also that patients aren't followed up properly. Phillocontin was replaced with theophylin for a certain type of asthma millions of moons ago and you should have been swapped over then. The inhalers and drugs you name have a completely different action. You should be able to have theophylin on the NHS. You really need to put in a formal complaint about these years of neglect. I hope that you will continue to feel better now thst you finally have the right drug.

[Brandi_pilot in reply to Hidden]

Thanks Littlepom,

At last someone believes in what I’m saying. I have emailed my doctor and they are obviously concerned with my sudden ‘return to life’ scenario as they are having a meeting tomorrow, I kid you not.

This is simply off the wall crazy. They should have prescribed a Phyllocontin replacement 10 years ago.

I’m not an ambulance leagal claim person. I just want an honest explanation as to how they have screwed up 10 years of life.

Don’t want to complain too much re cqc etc as I need a gp….

Ideas welcome

Jim

[Ern007]

I can remember I was on an inhaler called DUOVENT for COPD - It worked, it had two medicines in one inhaler, not I have Ventolin, (Not much use) Atrovent works for COPD and Asthma but with my Angina spray I now have pockets full , where used to be just 2 , 1 before angina. Every COPD review there would be another red or brown inhaler they try and get you to change to.

[PaulineHM]

Yes, discontinuing theophylline based meds can leave us with issues.

Have you requested a review with your surgery based pharmacist to discuss this issue ?

My experience is that they very helpful, wishing for the best outcomes for patients.

Wishing you well,

Pauline

[Brandi_pilot in reply to PaulineHM]

Hi, just had phone appointment with doctor. Point blank said Uniphyllin is a broncaldialator and the job of the asthma nurse is to treat the underlying symptoms. I pointed out maybe they should have done that over the last 15 years. It’s all about money!! Am looking forward to my next asthma review as am going to point out that they have made my life uncomfortable (understatement) for years. Can’t change gp as I’m not in the catchment area for another surgery!

[PaulineHM in reply to Brandi_pilot]

What a pain in the proverbial!! Have you requested an appointment with the Primary Care Network Pharmacist to discuss.

Does this help ? Let us know how you get on.

NICE guidelines August 2023

cks.nice.org.uk/topics/asth....

Good luck,

Go well.

Pauline

[Patk1]

Terrible treatment.You've been v unfortunate - I would change gp practise

I'm glad u have an inexpensive solution

[Likesdogs77]

That view is not being a conspiracy theorist, that is being a realist, if anyone were to call you one they would be displaying their ignorance. It seems more and more often that yesterday's conspiracy theory is tomorrow's self evident truth.Without going into specifics as I don't have asthma but am in early stages of being diagnosed with COPD, causes uncertain, I have had similar experience, and was even told things that were not true about the availability of what I wanted, whether knowingly or not, I don't know. In my case the respiratory nurse helped a lot, and by that I just mean was an honest person who listened to what my experience was , what I wanted to try, and clearly wanted the best for me and recomended prescribing/trialing the (relatively cheap) medication I had originally been told was not available as a monotherapy. Stick to believing yourself and your experiences and good luck to you, you have my empathy and best wishes.

[Alberta56]

Your post really does give food for thought. i hope you can get the correct medication on the NHS.

[Bardear]

I HAVE BEEN ON VENTOLIN FOR ABOUT 30 ODD YEARS - SOMETIMES WORKD SOMETIMES DOESN'T. I FIND USING IT THROUGH A SPACER IS SO MUCH BETTER - GETS INTO LUNGS QUICKER.

I HAVE COPD/ASTHMA AND WAS ON VENTOLIN/RELVAR/INCRUSE INHALERS (THE LAST TWO ARE 24 HOUR RELIEF ONES AND THEY DO WORK) AND HAVE BEEN ON THESE FOR ABOUT 4 YEARS. HOWEVER INCRUUSE AND RELVAR HAVE CHANGED MY VOCAL CORDS WHICH IS ONE OF THE SIODE EFFECTS NO MATTER HOW MUCH I RINSE OR GARGLE.

I HAVE JUST BEEN PRESCRIBED - OVER THE LAST 6 MONTHS A NEW IN HALER CALLED TRELEGY WHICH CONTAINS INCRUSE/RELVAR AND VENTOLIN ALL IN THE ONE INHALER. LOVELY AS THIS IS 24 HOUR RELIEF - SOMETIMES I NEED TO TAKE VENTOLIN ON ITS OWN ADDITIONALLY. VOCAL CORDS STILL CHANGED.

I HAVE ALSO JUST DONE A SPUTUM TEST - SPUTUM GREEN FOR AGES IF NOT YEARS - "IT'S PROBABLY THE RIGHT COLOUR FOR YOU!!!!!!!" PLUS VARIOUS OTHER "ER OK" OR "DON'T WORRY ABOUT IT" ETC ETC. ANYHOW THIS TEST WAS REQUESTED BY A YOUNG PRE-ASSESSMENT NURSE AND THE TEAM AND IT TURNED OUT TO BE PNEUMO MONAS - WONDER HOW LONG I'VE HAD IT. WEEKS OR ANTUIBIOTIC - UNFIT FOR OP.

IF YOU FEEL SOMETHING IS NOT RIGHT IT TAKES THE MIGHT OF HERCULES TO GET IT SORTED DOESN'T IT.

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[Normc]

Well I had success as my doc has given me one Ventolin to try. Also gave me a spacer to take the salumol with to see if it helped. Don’t think you have a conspiracy theory but I too am aware that those working in NHS & at pharmacies have a duty to use the lowest cost medication & so they should. The doc also showed me a graph on his pc which showed the greenhouse gases produced by various inhalers & Ventolin was worse than others but I hadn’t heard of most of them. I had a bad time the last few months but am improving now unrelated to Ventolin mostly due to the fact I did too much exercise I think so am taking things easier now. I got loads of replies to my original post & several agreed with me & had also persuaded their docs to put them back on Ventolin. So that’s what the forum is about I guess. All you can do is ask your doc so best of luck. Don’t criticise nurses the ones I have seen seem clued up.

[Normc]

2nd reply. Yes I have been taking Ventolin since it came out & I always described it as a miracle. So if your breathless it will sort it. However in the last 4 years I have had 2 debilitating asthma attacks when cycling. In both cases I had to be recovered by car & only after recovery & a long pause did I get my breathing back to normal levels when home. Was ok next day though. I also have bronch & copd since about 2012, diagnosed early 2014. In summary yes it’s good but there is a limit. Try a pre emptive strike & use it before exercise that’s what I do sometimes. These diseases are progressive so will get worse but things can be helped if your on the right meds for you. Best of luck