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Rheumy Update

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Just a quick update from my latest rheumatologist visit, last Thursday.

 

He is referring me to the Cardiologist as my last chest x-ray "suggests" some Pulmonary Hypertension. That kind of freaked me out a little, as I have had a prominent pulmonary artery for the last 16 years (that I know about) and no doctor has ever mentioned Pulmonary Hypertension before, but I guess now is as good a time as any to check it out!

He gave me cortisone injections in my carpal tunnel as it has been very bad, so far no improvement, but he said wait ten days.

 

I am almost off my Prednisone, but the lower I go, the itchier I get, so I have had to start taking the antihistamine tablets again as it is the only thing that helps me.

 

So thats pretty much it, he gave me the same old labs to do DsDna, ANA, ENA, Liver etc.......hopefully something new will show up soon to help in the diagnosis.

 

hugs to you all,

Irene

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Hi Irene,

 

The only two tests that I know about for testing for PH is Echo/Stress test (on a treadmill) and a Right Heart Catheter.

 

Hopefully someone can set you up with a link soon. If you type in Pulmonary Hypertension or Echo Stress Test in the box in the right hand column, near the search button, you will see that their has been alot of posts in the past about this.

 

Take care

Celia

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Thanks Celia and Pam,

 

I will do a bit more researching later today once I have rested my hands a bit, we have very wet stormy weather at the moment and it doesn't do my carpal tunnel any good.

 

Pam, he didn't mention treatment yet, he wants to wait and see what comes back, I hope it doesn't take me too long to see the Cardiologist, I am slowly learning patience!

 

thanks again for your support :)

 

Hugs,

Irene

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Hi Irene,

It sounds like we may be in the same boat. My rheumatologist sent me to a cardiologist just a couple of weeks ago to be checked for PH and the cardiologist did a stress test on a treadmill and also some sort of test that involved a camera circling by body and taking pictures. It wasn't an MRI) I wish I remembered what the two tests were called, but I don't. Anyway, the cardiologist said I do have "mild to moderate" PH, which upset me a lot. I reported this to my rheumatologist and she said we would talk about it when I next came in, which was only a week away at the time. She had previously said there are some great new drugs for PH and it's good to find out early that you have it, before it gets worse, I suppose.

Last week, I did go in and she wants me to go see a Dr. Torres in Dallas, which is the same name I'd been given by a friend of the family who happens to be a sclero expert and heart and lung doctor in California. So I feel good about the choice of doctors, and, once again, am reassured that I have a top-notch rheumatologist who knows her stuff! She checks in with Dr. Mayes from time to time regarding her sclero patients, and Dr. Mayes is a real expert in Houston.

Right now, I am still waiting to hear back from Dr. Torres regarding an appointment, after having all my medical records faxed over to him. Yes, I am learning patience, too.

Let me know how it all goes with you!

Mary in Texas

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Thanks for your reply Mary, I am very sorry to hear that you have PH, but it sounds like you have good doctors surrounding you.

 

If you don't mind me asking did you have any certainly symptoms of PH?

 

I will definitely keep you updated on how it goes.

 

Big hugs,

Irene

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Hi

 

I did an echo and a respiratory pulmonary function test. It was a tube that I had to insert in my mouth to blow into (a mouth piece similar to when you snorkel so that you can breath but your mouth seals the outside of it). I was blowing from that tube into a special balloon of some kind that was attached somehow to a machine at the other end of the tube (this measured some kind of waves, ultrasound waves I think?) on his monitor which determined how strong/weak my lungs were......so I had to inhale as deep as I could to get the deepest breath I could possibly get and then I had to blow it out through that tube until I had no air left to blow....several times...


Sending good wishes your way!

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Thanks for the hugs and thoughts Susie!

 

Snowbird thank you for sharing with me the tests you had done, it gave me a good insight.

I do vaguely remember the rheumatologist saying something about an Echo and a catheter, I wasn't really absorbing it all at the time, but my husband who came with me reminded me of it.......it pays to take someone sometimes as my mind is mush.

 

I have now been off the Prednisone for 3 days, feeling okay, just quite emotional, but that could be because I have just got my period for the 3rd time this month! I am begining to think that the tapering of prednisone has something to do with that??

 

hugs,

Irene

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Thanks for the update.

 

I sure hope your able to get in the the cardo appt quickly so it can ease your concerns.

 

Best Wishes!


Take care and stay warm,

 

Michelle

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