Advice Please

[garshe]

Is there anyone who has both COPD and PULMONARY HYPERTENSION my question is what medication have you been prescribed if any..

Thank you

Sheila xx

[Dottie11]

Sorry I don't suffer from these issues. Hope someone will be along to advise soon. xx

[garshe in reply to Dottie11]

So do I. Thank you xx

[Alberta56]

Hi Sheila, I have bronchiectasis, not COPD, and high blood pressure. I am prescribed Motens 2mg tablets for the BP. The medicine in the tablets is Lacidipine. My blood pressure is reasonable most of the time. but can shoot up like mad under any stress. I wonder how long it will be be before someone decides I need something stronger.

I hope you are keeping as well as poss and looking after yourself, staying nice and warm while the weather is so dreary. xxxx Chris

[garshe in reply to Alberta56]

I've been diagnosed with Pulmonary Hypertension as well as my copd. I'm on oxygen 24/7 for the rest of my life which you need for the Pulmonary hypertension..there's also other. Medication which I've not been prescribed not happy xxSheila

[AngieB72]

I have pulmonary fibrosis and pulmonary hypertension. For the pulmonary hypertension I take Macitentan and Sildenafil. Lots of other medications for other issues too. Also on ambulatory oxygen. Are you under a PH centre of excellence? The PH medications are very expensive and often only available from these centres. There are only 7 or eight in the UK.

[garshe in reply to AngieB72]

Thank you for replying. I have not been given any medication other than oxygen 24/7 . I am positive I should be given some other medication also .xxSheila

[Threecats]

Hi Garshe

I’m very sorry to hear of your additional diagnosis of pulmonary hypertension. I’ve been told I have mild PH along with my heart problems but not sufficiently bad enough to be referred to one of the specialist centres for PH yet. They’d rather wait until it’s severe before offering treatment even though I struggle with walking now🤷‍♀️

Anyway, enough of my moaning! There is a very helpful forum on Facebook, set up by the Pulmonary Hypertension Association where it would be worth you posting your question, I think. I don’t seem to be able to post a link to the Association’s website here but if you search for phauk. org it’ll come up and the link to their forum can be found on their “Support for PH” page.

I’m sorry it’s not much help. It seems one needs to push hard to get a referral to a specialist centre - not always easy when you’re feeling less than well, though.

I hope you manage to get some answers soon.

Best wishes to you, TC

[garshe in reply to Threecats]

Thank you for your reply you have been very helpfull I don't know what stage my Pulmonary Hypertension is. I'll try and find out today. Thanks again xx.Sheila

[PaulineHM]

Hi Sheila,

Ah it’s a double whammy isn’t it ? COPD and PH. Often PH is secondary to progressive COPD which isn’t very jolly I know.

My son has primary PH and it is well controlled with some medication however I haven’t ever seen secondary PH medicated.

Yes contact the PH association I am sure they will be able to help you find if there is anything to help you further.

Go well

Pauline

[Millyboo710]

I have interstitial lung disease and have been on oxygen 24/7 since September 2021. I also take a shedload of drugs for that. I was diagnosed with pulmonary hypertension at the same time and have been on 25g of Sildenafil three times a day since then. I have echocardiograms every six months.

Good luck.

[garshe in reply to Millyboo710]

Thank you so much I will look into this xxtake care xx.Sheila

[katieoxo60]

Hi Sheila, this is a difficult one as I have found over the years . Many BP tablets have cough as side effect and can effect your breathing . So if you feel OK with the treatment I would stick with it for now . If not then chase up your GP on it. Nice to see you back on site. Stay warm and as well as can be xx

[garshe in reply to katieoxo60]

I haven't been given any treatment for pulmonary hypertension. Except 24/7 oxygen.they say i don't need it as it won't help me because I'm 80..I'm furious my age should not have been mentioned. I was diagnosed February but they say I've had it 5 yrs no one told me or gave me an echocardiogramme I had that in February. Not making sense

.xxthank you so much lots of ❤️ xxSheila

[katieoxo60 in reply to garshe]

I agree Age should not come into it, thats strange five years without informing patient. Guess you are in the catch 22 they don't seem to want to treat it . Have to admit I feel happier without the fear of the tablets making my other illness worse. I have lost a stone in weight since July but its made very little difference to my BP. So not sure what is best for us. What do you think ?

[garshe in reply to katieoxo60]

Well I haven't got any symptoms other than breathlessness and that's my Copd. All the others listed I do not have. I haven't gained weight in fact I've lost half a stone. I have just phoned the lung helpline on here. They are lovely. Waiting for a senior nurse to ring ne back. I'll let you know xxtake care xx.Sheila

[garshe in reply to garshe]

Good news the lung nurse rang me and explained because my Pulmonary hypertension is secondary to my copd i only need oxygen as my copd medication treats my Pulmonary Hypertension It makes no difference how old you are..

Even if I was 60 I'd have same treatment.

If you don't have copd then you get other medication with oxygen

Thank goodness

Feel so much better .pity others didn't explain xx.Sheila

[HungryHufflepuff in reply to garshe]

I’m so glad the nurse rang you back and was able to explain things. It does feel like a burden has been lifted when someone explains what’s going on. Thank goodness for the helpline nurses.

[garshe in reply to HungryHufflepuff]

I know she was fantastic and explained it so I could understand. Taken a weight off my mind. Have a nice day xx8

[garshe in reply to katieoxo60]

I've spoken to lung nurse. My reply is further down page x xx.Sheila

[Loopylorre]

Sorry to hear your having this problem, I hope you manage to get some answers & help from the nurse, good to see you back here,take care 😊🌺💐🌺 xx

[garshe in reply to Loopylorre]

Thank you. Spoken to so many people and now waiting on 2 call backsBring back the good old days when the family doctor knew everyone by name and would make house calls. They've got it easy today..it all changed when Covid was around and it's never gone back to normal..xx take care xx.Sheila

[Will57]

I have both. I'm under Royal Papworth for my PH which i've been prescribed 2x20 mgs Tadalafil per day and I have a full check up every 6 month'month's. Because of this diagnosis I cannot have the LVR operation on my right lung.

Had my left lung operated on just before Covid

[garshe in reply to Will57]

Are you on oxygen?. Thanks xx.Sheila