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Pulmonary hypertention

Pammic1457 profile image
8 Replies

Hi everyone

Is anyone taking sildenafil for pulmonary hypertension Mick was prescribed it beginning of year 25mg three times a day with a review after few months still waiting for review !!! Can his dose be increased ? His quality of life atm not good 😦

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Pammic1457
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8 Replies
mrsmummy profile image
mrsmummy

Hi Pam. This is not something I have taken but I am sure that any members who have will share their experiences with you.

You could also try ringing the BLF Helpline on 03000 030 555 during office hours Monday to Friday.

SquirrelsHolt profile image
SquirrelsHolt

Hi there, sorry I've had problems trying to use your name at the top of my message. I'm still waiting/trying to speed up my appt with Prof Wells at the Royal BROMPTON Hospital to be put on these tablets for my PH. 6 months later,I'm still waiting!! So I'm interested to read your husband really hasn't seen any progress breathing wise,after being on them for several weeks. Do you mind telling me how easy the whole procedure was to get the medication? Plus,what benefits or non-benefits has your husband noticed?

I thank you in advance for taking time out to answer my shopping list of questions. Obviously, this is just for my own information so I can be brought up to date with Amy side effects etc with the so called wonder drug!

Pammic1457 profile image
Pammic1457 in reply to SquirrelsHolt

Hello SquirrelsHolt

It seems like most things nowdays getting diagnosis and treatment takes time after trips to Sheffield for tests my husband was prescribed this medication on compassionate grounds which meant that if he showed no improvement the meds would be withdrawn when he first started to take it he did feel some benefit getting upstairs was a bit easier as time as gone on he is struggling again were waiting for Sheffield to assess him again he has been taking it for three months now.The most troublesome side effect for my husband is nosebleeds hope that answers some of your questions.

SquirrelsHolt profile image
SquirrelsHolt in reply to Pammic1457

Thank you so very much for your reply and I can see now,how each individual deals differently with each medication. Wishing your husband all the best and praise to you for being behind him 101%. Excellent. Take care.

AngieB72 profile image
AngieB72

I started in 25mg three times a day and was then increased to 50mg three times a day and now have had macitentan added. My pressures are now at the top end of normal so the combination is definitely doing something. If only there was something to help the pulmonary fibrosis I have too!!

Pammic1457 profile image
Pammic1457 in reply to AngieB72

Yes my husband has that too thanks for your reply maybe we should try and get appointment through quicker and discuss an increase . Thanks once again AngieB52

sarcoid1234 profile image
sarcoid1234

I have pulmonary hypertension, and after having a right heart catheterisation to determine the level of my PH (it didn't hurt at all) in September 2015 I was given 25mg Sildenafil three times a day. About six months later I was prescried 50g sildenafil three times a day. I have had no side effects.

Pammic1457 profile image
Pammic1457 in reply to sarcoid1234

Thanks for your reply finding out that my husband could possibly have an increase of Sildenafil strength is encouraging as his quality of life ATM is not good . Its great that you have no side effects on this medication I think a combination of oxygen and Sildenafil increases my husbands nosebleeds but he can put up with that side effect as his exercise tolerance is improving slowly!!!

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