When did you see improvements? Tracleer for pulmonary hypertension

[edingSDAP7mos.]

Hi!

It's been a while since I visited the website.  This is a nice revised format.

For those who have been blessed & is on complete remission when did you see signs of improvements? And what were the signs that you think the AB is finally working?

I am now going on my 7th mo. by may 9th on mino 100 mg. x2 M-F only, & 3rd mo. on clinda 300mg. M-Sun. Never went on IV clinda. There  was a choice to take it by mouth or IV & of course I chose the capsule. Haven't seen any improvements yet. It's a little frustrating.  Needs  a lot of encouragement from you guys.

The symptoms have worsen.  Hands are more swollen than before & the tightness of the skin had reached my lower abdomen. The pulmonologist says I got a mild pulmonary hypertension which accounted for my shortness of breathing on exertion.  Stress echo showed  RV as 43 which he considered high; also desaturated to 82% on the 6 min. walk test. The RT has to administer  6 li. of oxygen to raise my oxygen level to the 90's. I now use oxygen. Bummer!

Pulmy wants  to start this new drug Bosantan ( tracleer) . Anyone on this? Viagra is out of the question because I already had bleeding in my retina last year. I'm afraid to test the limit of my eyes.

AB is my hope & of course devine intervention. Hearing all your testimonials are godsend.

God bless.

Eding

 

[Goodwife]

Hi,

My hubby has SD.  For the first 4-5 months on mino daily, things did worsen.  Very frustrating and scary.  By month six, my hubby decided to try the IV clindy.  Once he started the IVs, he dropped his m ino to MWF to give himself a break of sorts.  I truly believe the IVs gave him a jumpstart on the road to recovery.  Although his symptoms were not the same as yours – he didn't have the lung involvement, and skin involvement was very minimal, but his hands were swollen, raynauds, fatigue, weight issues, etc.  From then on, it was a gradual, slow improvement of all symptoms.  He is on AP 17 months now – the mino MWF, and occasional IVs, which he is due for – I do not believe he is at the state of “remission” yet, that is why I would like him to continue the IVs.  It seems from what others have said that the oral clindy does not have the same effect as the IVs.  Maybe someone else w/knowledge of this will post.  I don't know anything about the Tracleer, but when hubby started getting bad ulcers on his hands that wouldn't heal, the rheumy suggested maybe to try the Tracleer for the ulcers.  He also mentioned the Viagra, but neither were necessary, as a combination of the mino and antiinflammatory diet, supplements, etc. healed his hands remarkably.  Maybe look into doing the IVs.  Good luck to you –

[Author]

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