Macidentan

[Inamoment]

I've just had a call from the Brompton and they have prescribed this for me. Anyone else take it?

I have scleroderma related PAH and currently take warfarin, sildenafil and a ppi.

I found this england.nhs.uk/commissionin.... Page 12 says the annual cost is £27k, quite expensive really.

[JayneO]

I have been taking Macetentan since February, and have found it very beneficial it has lowered my lung pressures by half!!!! I have the same diagnosis as you, good luck!

[Inamoment in reply to JayneO]

Oh that is really good, just what I need too. Trust I respond as well as you have

[AngieB72]

I'm about to start it, I have to go to the Brompton on 1st Nov to be monitored for the day when I start it. Also on sildenafil for PAH amongst other medication. I have heard good things about it so fingers crossed for both of us.

[Inamoment in reply to AngieB72]

How is it going?

[AngieB72 in reply to Inamoment]

Thanks for asking.

No problems at all. Had a lung function test on Monday which showed some improvement however not sure if that is the macitentan as it was less than a week!!!!!

Have you started yours yet?

[Inamoment in reply to AngieB72]

yep. I felt better the same day which is unusual I think. I am certainly better than I was, it varies but I can often walk upstairs without getting out of puff. That is a big plus. I don't know if the effect builds up or varies from person to person. I feel brighter than I have for a year or more. Still can't walk very far mind.

This forum software doesn't tell me if someone replies to a sub-reply to a topic I have commented on but only if someone replies to the main topic. I wonder if that can be fixed? I've just seen your reply because I didn't get a notification

[sarcoid123]

Hello. I am a patient with Pulmonary Hypertension at The Royal Brompton Hospital, and have been taking Sildenafil since January. Can each of you, if you see this, let me know what dose you are on please.

Also why were you prescribed with Macidentan and do you stop the Sildenafil when on Macidentan?

Thank you. Christine

[Inamoment in reply to sarcoid123]

I was on 25mg? (one tablet) Sildenafil three times a day until a couple of weeks ago. It has just been doubled. My pulmonary pressure has not dropped, I do feel better and get a little less out of breath. My last 6 min walk (I hate those) was up by 10% @ 300m. I suppose they think I should be improving hence the new medication. I will be taking Sildenafil as well.

[sarcoid123 in reply to Inamoment]

Thank you Peter for your quick reply. Christine

[AngieB72 in reply to sarcoid123]

Sorry Christine only just seen this. I've been on sildenafil since September last year. I started on 3 x 25mg per day and then was increased to 50mg in about April as it was having no effect. After another RHC in October this year there was not much difference and I still wasn't feeling any effects so it was decided to add 10mg of macitentan per day.

The PH nurse said it was usual to have a combination and rare to just have the sildenafil on it's own.

Been on it since 1st Nov and so far so good - no bad side effects.

Feel free to ask anything else you think I can help with.

Angela

[JayneO]

I had been on sildenafil 50gr x 3 daily when I had a RHC in December at the Royal Free and it showed no improvement hence they added in Mactentan, I can honestly say I feel so much better and everybody has commented how much better I look, for me it has been a wonder drug, taking my PH from severe to mild and giving me some of my life back, I hope that both of you will benefit as I have it's just so good to feel more normal again. Take care Jayne

[Bagpuss1972]

Hi I have the same conditions and take sildenafil and ambrisentan. I'm treated by the Royal Hallamshire in Sheffield.

[Inamoment in reply to Bagpuss1972]

Have the new tablets helped you at all?

[Bagpuss1972 in reply to Inamoment]

I'm now on 50mg sildenafil and 10mg ambrisentan which is double the dosage from original prescribed level and hoping my pressures will have reduced further. Due for my next review shortly. Hope the Mactentan will improve things for you.

[Inamoment in reply to Bagpuss1972]

Oh it has. I have just gone upstairs without getting out of breath, haven't done that for a long time. Have to see what happens, I don't know if the improvement I have now is as good as it gets or if I will improve more in the short term. It's a gradual downward path I know.

[Inamoment]

3 boxes of pills arrived today, I have to be in hospital to be monitored for the first pill, I'll ring them tomorrow.

I found a report on American research. The average result was 22m further on the dreaded 6 min walk test. I hope it is better than that, that seems a very small improvement.

Fingers crossed

[vlarryj77]

The condition you have is curable or at the very least can be managed. There is different stages of PH!! You do not according to the report have PH!!!!!

I do not know why they put classifications on it. Every lung disease has a underlying condition. That is the part they can treat and cure for the most part. I can not tell you what the cost is out there as I don't live in the UK.

[mrsmummy in reply to vlarryj77]

No cure is available for pulmonary arterial hypertension (PAH). Although there is no cure, there are treatments available. PAH is a progressive disease and the treatment focuses on relieving symptoms and slowing the progression of the disease.

[vlarryj77]

Sorry all but it seems that this is the wrong Community for PH. I have my place where I started talking about PH. That is where I will be from now on. Myself I do not have PAH which is different.

[Inamoment]

Finally got started on this. I was very pleased that I didn't have to go to the Brompton but St Richards in Chichester handled it. I started feeling perkier straightaway and feel much better this morning. Very pleased.

[sarcoid123]

Thank you petermeachem for starting this thread, and to AngieB72 for private messaging me which prompted me to look again at the thread and to everyone who has replied - very useful information. I increased my sildenafil from 25mg 3 times a day to 50mg 3 times a day last week. Not sure if I feel any better but I have appointment at the Royal Brompton towards the end of December and discuss whether I need Macidentan as well. I suspect not, as my pulmonary hypertension (not sure if it is pulmonary arterial hypertension!) is caused by the extensive sarcoidosis granuloma scarring in my lungs.

[AngieB72 in reply to sarcoid123]

Mine is caused by scarring in the lungs too!

[sarcoid123 in reply to AngieB72]

Thank you AngieB72. That is very useful information to know.

[SquirrelsHolt in reply to sarcoid123]

Hi there I was reading the posts about Pulmonary Hypertension and Pulmonary Artieral Hypertension, PH & PAH. I'm interested as I'm hoping that the Royal Brompton Hosp will put me onto the same tablets you are all talking about. Waiting for an appointment just seems to take forever but due to all your comments,I'm very hopeful that I will benefit also. Please keep telling us how things are going sarcoid123 ,@petermeachem and Bagpuss1972 JayneO JayneOJayneOJayneJayneOJayneOJayneOJaynJayneOJayneOJayneOJayneJayneOJayneOJayneOJayJayneOJayneOJayneOJayneJayneOJayneOJayneOJaynJayneOJayneOJayneOJayneJayneOJayneOJayneOJ

[Inamoment in reply to SquirrelsHolt]

I don't think I had to wait too long. My local consultant referred me to to the Brompton and sent them a pile of scans etc. They delivered the pills within a few weeks. They wanted me to go there to be monitored for the first pill. I wasn't at all keen, I travel badly and felt very ill after the trip I made up there. After a bit of discussion Chichester did the monitoring, it was just a matter of doing obs for a few hours but apparently could take up to two days, I'm not sure why.

Hope your wait is not too long, let us know what happens.

[SquirrelsHolt in reply to Inamoment]

Thanks for your reply and I will let you know how I'm getting on, although only at the referral back to the BROMPTON at the present time!