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Crest And Shortness Of Breath Always = PH?


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#1 Maddy07

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Posted 19 September 2007 - 05:26 PM

I've noticed on a few posts people with CREST mentioning shortness of breath.

I've had shortness of breath and am being evaluated of course for pulmonary hypertension. Part of me feels like it's just a foregone conclusion...you have a history of CREST, you have SOB, ph is going to be my diagnosis.

Am I naive in thinking that? Am I imagining it when I see many who just have SOB as part of the Scleroderma itself (and thus is treated or affected by meds that treat Ssc)?

I dunno, I just figured it was a given...now in my reading today I'm wondering if myabe there's a shot I don't have it?

BTW, my echo done to check for pericardial effusion (due to sob) showed a slightly high systolic pressure of 35. Echo's don't diagnose ph of course and so we won't know for sure until my right heart cath which is soon to be scheduled (see my new cardio next thurs).

So I'm in waiting mode, but are there several here who have sob as "just" part of CREST and not necessarily ph?

Thanks for answering in advance.
Maddy
Maddy
38 yr old mommy to 2 boys
Raynaud's, CREST diagnosed '96
Pulmonary Hypertension diagnosed Oct '07
GERD, Inefficient Esophageal Motility diagnosed Jan '09

#2 peanut

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Posted 19 September 2007 - 05:50 PM

Hi Maddy,
I know it's hard to wait for answers but I really do think there's no definitives, or always-es with scleroderma. Many people are just simply short of breath from fatigue. Others are SOB due to lung issues but no PH.

I have diffuse sclero with mild PH and lung issues. I take revatio & letairis for my PH.
There are others here who know lots more than I do though...

All the best,
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#3 summer

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Posted 19 September 2007 - 07:41 PM

Hi Maddy,
I can certainly relate to how you are feeling. I was diagnosed Feb this year with Limited/Crest Scleroderma and have been SOB from that time. It is a constant thing now especially with exertion.

I am also being investigated for PH and am awaiting the results of an stress echo.
I am due to see my Cardiologist in 3 weeks time and also will probably have to undergo a right heart catheter.

It is a waiting game, this disease sure makes you a very patient person in the end, awaiting results, more tests and so forth.

I have a referral to see a Respiratory/Thoracic Physician in November to also try and sort out all of these annoying symptoms that come and go.

I am on Prednisolone at the moment, I know that there are warnings about the uses of prednisolone on Scleroderma patients. I had no life prior to being on it, Prednisolone has given me a little bit of hope that I can function like a normal person for once. I decided I would take a risk with Prednisolone, I am currently on 7.5mg and hope to stay at 5mg permanently.

Good luck and I hope you find some relief soon.

Take care
Celia :)

#4 bookworm

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Posted 19 September 2007 - 07:44 PM

Hi, Maddy,
I have CREST and shortness of breath but no PH. I had asthma as a child and, as a young adult, I smoked, so I've had SOB off and on my whole life! So, no, it's not just a given.
Good luck!

Mary in Texas

#5 Maddy07

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Posted 20 September 2007 - 01:08 AM

Thanks everyone! Yes, I feel silly, but I REALLY thought it was just a given that if you have SOB and CREST that PH was going to be added to my list of diagnosis's. I literally didn't know it might not be.

I've had some major brain fog lately so forgive me if I've discussed it before or asked before...just trying to clarify. Waiting is a game I'm mastering...but it's nice to know ALL of the possibilities ya know?

Happy Thursday!
Maddy
38 yr old mommy to 2 boys
Raynaud's, CREST diagnosed '96
Pulmonary Hypertension diagnosed Oct '07
GERD, Inefficient Esophageal Motility diagnosed Jan '09

#6 susie54

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Posted 20 September 2007 - 02:05 AM

Hi Maddy,

I have had shortness of breath that is awful when it hits and usually stays for a few months and then abates for awhile. Last time I had it real bad I had borderline PH . I know this disease can drive you crazy with tests and waiting. I hope your symptoms disappear for you and all this can be just a memory. I have MCTD for eight years now. I have had shortness of breath on and off about five times during that time. Susie54

#7 Vee

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Posted 21 September 2007 - 03:33 AM

Hi Maddy,

I have some of the CREST stuff and SOB. I went thru the right heart cath, because the doctors were suspicious that I had PAH. I did NOT! So it's not always PAH. But, make sure you get the appropriate testing done to rule it out. Always be safe and one step ahead of the game!
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#8 Joel

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Posted 21 September 2007 - 02:37 PM

Hi Maddy,

I was diagnosis with Non-Speciic Interstitial Pneumonitis and subsequent Pulmonary Fibrosis in Dec of 2001. My pulmonologist predicted SSc within five years. I was diagnosis withCREST Jan 06. My lungs are slowly getting worse. At my last visit my Doctor thought that I may need a lung transplant within 10 years .

Obviously Pulmonary Hypertension is a big concern in which they are testing me for regularly, to date no sign of it yet. So, I say all this to say that SOB does not necessarily mean PH.

My Doctor also said that he has been amazed at the avancement of drug therapy for PH in the last 5 years. So who nows what's on the horizon.

Joel

#9 peanut

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Posted 21 September 2007 - 03:49 PM

Joel,
I've always wondered about lung transplants with pulmonary fibrosis. I also have fibrosis. If you get new lungs will the fibrosis grow back into the new lungs?

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#10 emmie

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Posted 21 September 2007 - 05:35 PM

Hi Maddy,

I have limited scleroderma. I have/had mild/moderate interstitial lung disease. After being treated with cellcept, one and one-half years later, the CT scan of my lungs look clear!!! I no longer get nearly as short of breath as I did.

My points are that my shortness of breath was NOT PH. The ILD I experienced responded wonderfully to cellcept. Cellcept also seems to have helped the skin on my hands soften quite a bit.

all the best,

xoxo emmie

#11 Joel

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Posted 22 September 2007 - 12:35 PM

Peanut,

I don't know if the fibrosis will come back with new lungs. I guess if it did it is still better than the alternative.

Joel