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symptoms of pulmonary hypertension


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#1 lizzie

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Posted 11 February 2008 - 11:46 AM

I have recently developed new symptoms: swollen feet/legs with pitting odema and dizziness but no breathlessness. doctors obviously thinking could be pulmonary hypertension (although haven't said as such to me) and have ordered Echo /PFTs. I was just curious to know if anyone else has had the swollen feet /legs thing and dizziness and whether it turned out to be due PHT or not. My last echo a few months ago was absolutely fine and am not overly concerned - personally think it could be due to the large dose of calcium channel blockers I am taking.

Lizzie

#2 janey

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Posted 11 February 2008 - 04:40 PM

Lizzie,
I found this article on MedicineNet.com about edema that you might be interested in reading.

What causes pitting edema?

Here's an exert: Edema is caused by either systemic diseases, that is, diseases that affect the various organ systems of the body, or by local conditions involving just the affected extremities. The most common systemic diseases that are associated with edema involve the heart, liver, and kidneys. In these diseases, edema occurs primarily because of the body's retention of too much salt.

Commonly the first symptom of PH is shortness of breath. You mention that you don't have that so hopefully, that isn't the problem. It's good that you are getting these tests done so you can see IF anything is going on and to get a baseline for future tests. Please let us know how they turn out

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)

#3 CraigR

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Posted 14 February 2008 - 09:02 AM

Do you have a good pulmonologist? I ask this because you can go through a lot trying to get a decent diagnosis from a non-specialist.

My first PFTs were remarkable - 125 to 210% of expected. My primary care physician said that there was no way that I had a problem, and said that I must be breathless because I was out of shape (even though I was at ideal weight, walking a few miles every day, swimming vigorously 5 nights a week, and working in my yard...)

Pulmonologist said that the high PFT figures pointed to a problem - that the body was overcompensating to get the O2 it needed. But he told me that it was so mild that I shouldn't notice it. My protest were met with the usual doctor arrogance, I.e., if your symptoms don't match the doctor's diagnosis, you must be delusional...

I didn't get a good diagnosis until I went to one of the best centers for PH - UC San Diego. So be sure you're at a top center for PH treatment - since it's a rare disease.

Echo can give them clues about the situation - but you really should find a good pulmonologist and get a right heart catheterization. This is the only way to truly find out you pulmonary blood pressure. I just had my third one last week. They insert a wire-like thing into a vein, and then up into the right side of the heart. Worst part is a little sting from the injection of local anesthetic. No big deal really.

Good Luck

Craig

#4 CraigR

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Posted 14 February 2008 - 09:13 AM

Hello again,

There is a good listing of PH centers to be found at www.phcentral.org.

Craig

#5 lizzie

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Posted 14 February 2008 - 12:54 PM

Hi Craig, thanks for the info. I think you are right that we have to persist in the face of doctors dismissal of symptoms. I live in the UK and here you cannot refer yourself to a specialist , even if you pay. I would either have to be referred by the rheumatologist or my general practitioner. Thankfully though my rheumatolgist is very throrough and follows through on any symptoms that develop, I have every confidence in him. I am certain that he would refer me to a pulmonary specialist if the problem persists - there is an excellent centre for pulmonary hypertension about 30 miles away. Will wait to see what PFTs and Echo show and take it from there.

Thanks again
Lizzie

#6 Buttons

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Posted 15 February 2008 - 12:26 AM

Hi Lizzie

Hope all goes well with your tests and that it's not to long before you get the results.

I've been getting breathless for a while & my rheumatologist referred me to cardiologist because my first echocardiogram showed some 'stiffening' of the heart. She did stress test which she said was fine except she thought I became to breathless to quickly so now go for a second echocardiogram on Monday. She also said she thought it may be my lungs so will just have to wait & see.
I also get kind of dizzy, fairly frequently along with a numbness in the side of my neck & a tingling in my tongue, it is weird! So am going for an MRI scan today. But don't see rheumatologist until May for the results!

Do take care Lizzie

Jensue

#7 lizzie

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Posted 15 February 2008 - 03:11 AM

Thanks Jensue.
You have got a long time to wait for results. Did you have to wai long for the MRI appointment in the first place? How often do you get to see your rheumatologist?
I will get to find out results pretty quickly (unless they lose them like last time!) as I am in for a week of Iloprost early March (going in every 8 weeks at the moment). I really am not very concerned as at the gym I can manage walking on the treadmill at quite a steep uphill gradient easily for 15 minutes or more without getting breathless. I get the impression that being breathless would precede the leg swelling if were PHT.

Hope all went well with the MRI
Lizzie

#8 Buttons

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Posted 15 February 2008 - 06:22 AM

I see the rheumatologist once every 4 months and he asked for the MRI scan in January when I saw him so it's about 6 weeks. It was done by one of those mobile units about 30 miles from where I live, they rang last Friday evening for the appointment today. But because my next rheumatologist appointment is not till beginning of May I will have to wait for the results and of MRI & the nerve conduction tests I had done about 3 week ago. ( The technician did tell me though that I had carpel tunnel in both hands even though they're not supposed to say anything)

My husband thinks it's ridiculous that I have to wait so long for results.

Hope the iloprust goes well for you, I had it last May but it didn't help much so they're not doing another.

Take care

Jensue

#9 LMS

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Posted 15 February 2008 - 01:51 PM

You are correct in thinking that your situation is a side effect of calcium channel blockers. CCB work by dilating the arterioles and as a result create a "pooling effect" in the feet and ankles. Not to mention dizziness because your blood pressure is being lowered. This is the reason why my rheumatologist won't Rx a CCB for my Raynaud's. My blood pressure at last check was 104/68. She is afraid it will cause me to become too dizzy and faint. But at the same time don't discount pulmonary hypt.

#10 Sherion

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Posted 15 February 2008 - 02:22 PM

Jensue,
Can't you call your rheumatologist to get the results over the phone? May seems like an awfully long time to wait for results.
Good luck on the results.

Sherion

#11 lizzie

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Posted 15 February 2008 - 11:44 PM

Hi LMS,
I noticed that this is your 1st post - wlecome to the forum.

I can undertand why your rheumatologist doesn't prescribe CCBs, in afct a lot of people can't tolerate them. I have pretty severe raynauds and the CCBs do make a difference and in fact don't actually seem to make much difference to my BP - still around 130/80 - might even be hypertensive without them! However if eco , PFTs show no problem am going to suggest to rheumatologist that could try reduce/ stop the CCBs and see if it makes a difference. My other thought is thatthe swelling/itching may be a precursor to skin thickening - there are definately some cahnges in skin texture there.

Lizzie