Hi I'm new here, I've had ra for 5yrs. Started coughing, I've been dx with emphysema, ILD, ra lung, nodules, drs now think I've PH scared.

[Amandaprice63]

My sats started to drop to 82% at rest, sleep apnea test showed sats were between 82-94% heart rate peaked 150. Was put on 4lt O2. Then found I was vacant and would feel drunk, this was when sats are low. Went back to Hos, they redid ct, walk test, dr said he was watching sat thing and at rest says we're still dropping, backing up what I'd said. He explained during 3 day tests in April, one test came back inconclusive. Ultra scan of heart. He had latest lung function done in dec 2013, lung capacity was either 29-27% can't remember which. But they feel I've got pulmonary hypertension. I go this month to PH clinic. This is new to me and I'm scared. My ra is flaring, I take so many meds. Very high steroids, I've also got high cholesterol with xanthelasmata. Very worried any advice would be great fully received.

[teaky-19]

i suggest you contact mattcass on this site he has same condition as you I think he has had it for 14 years

[normaallsop]

I'm sorry you are not well. Just be carefull of high steroids I was on 60mg a day for 4mnths, had lots of probs. also they appear to have made my muscles around the neck and back start to waste away. Take care but please be carefull

[peege]

You have a great deal to contend with Amanda and I greatly sympathise - although that's not much help to you.

There are others here with similar to you, in the meantime I strongly suggest you call the BLF helpline on 03000 030 555, it's the cost of a local call from landlines. They are marvelous, trained people with nurses, counsellors on hand to offer advice. Call now, the work to office hours. Good luck, my very best wishes to you. Peeg

[Hidden]

Hi Amanda,welcome to the site,I do hope you will find some comfort here.

I Realy can't add,to what others have said,all good advice.

Do please get some help with things,& don't feel alone,take care,love Wendells xxx

[bayleyray-uk]

Hi Amanda,

Welcome to the site, can't offer any useful advice but you will find us a very friendly bunch. Take care

Sue