Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Update On Rheumatology Visit


  • Please log in to reply
7 replies to this topic

#1 summer

summer

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 522 posts

Posted 15 August 2007 - 12:24 AM

Hi Everyone,
Just an update, I saw my rheumatologist on Monday for a checkup as I have been having problems with my lungs , SOB, and pain when breathing especially at night time, terrible fatigue, lightheadedness and dizziness.

My chest x-ray was normal, my rheumatologist was going to send me on my way without any meds. He basically told me that he hasn't seen another scleroderma patient presenting with pain in the lungs when breathing and that it wasn't scleroderma related!. I was very upset and told him that there was something wrong and I didn't care what the chest x-ray said but to keep looking. After being in his office for an hour and with me complaining about how I had lost faith in all doctors, he agreed to put me on a course of Prednisolone. I have been on this before and felt great on it except for kidney pains which have now subsided.

He said the usual course is : 25mg for one week, 12mg for second week, 7.5mg for third week, then 5mg thereafter. If there was no problems I could stay on 5mg thereafter but would have to take calcium tablets and vitamin D tablets.
I have been tested by another dr for vitamin d levels and have been told they are extremely high!

I haven't yet started the prednisolone as I am still thinking about it.

I have just had another PFT today to compare for the one I had in early March this year. The technician told me that everything was basically the same except my DCLO had declined. The PFT test in March DCLO was above the normal range it I think was 20 or 21 something. The normal range is 18.9.
The DCLO todays was 18.6, she then checked my haemoglobin level to test the amount of oxygen was in my blood, that was normal.

The tech said that it points to the direction of PH but to see my rheumatologist about it.

I am due for a stress/ECho next week, my Cardiologist will be doing this himself.
I also have to have a VQ test soon.

What is the treatment for PH and I wonder whether the pain I am experiencing could be related to this or is something completely different

Thanks once again everyone you are all great :)

Celia

#2 tintin

tintin

    Senior Bronze Member

  • Members
  • PipPipPip
  • 40 posts
  • Location:New York

Posted 15 August 2007 - 03:15 AM

I read that an increased DLCO is associated with early SSc [1], and that certain lung changes leads to an increased diffusing capacity, interstitial and alveolar inflammation, pulmonary vascular changes, and immunological changes [2].

[1] Dujić Z, Eterović D, Tocilj J, Andjelinović D. Increase of pulmonary diffusing capacity in systemic sclerosis. Br J Rheumatol. 1994 May;33(5):437-41
[2] Matthay RA, Bromberg SI, Putman CE. Pulmonary-renal syndromes: a review. Yale J Biol Med. 1980;53:497-523.
keep on smiling

crawler

#3 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 15 August 2007 - 04:05 AM

Celia,
You are very smart to push to have your chest pains address! I just don't understand how doctors can ignore such a symptom, but they do. In reference to your pft - (remember I am not a doctor, but this is my understand of them) - your "normal" of 18.9 is YOUR normal based on age, weight, etc. Looking over 3 years of my pfts it the normal or "ref" has changed slightly each year. The last one (7/05/07) - normal or ref for me was 24.9, but actual was 13.9 putting my DLCO at 56%. That was actually UP by 7% from March so I'll take it.

Your ECHO next week will check the pulmonary artery pressure - another indicator of PAH if the pressure is high (I think greater than 25). Here is a recent study that I found on our pulmonary hypertension page that you might want to read.

Echocardiography and pulmonary function as screening tests for pulmonary arterial hypertension in systemic sclerosis.

As far as treatments for PH, there are several. Here is our page on Pulmonary Hypertension Treatments. I'm taking Tracleer (Bosetan) for 10 months and it's already dropped my PA pressure from 45 to between 25 to 30. I'm now at half dose. BTW - I've never had chest pains as you describe. Please bring them up to your cardiologist.

Please let us know how your testing goes next week.

Big Hugs,


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,261 posts
  • Location:Minnesota

Posted 15 August 2007 - 06:06 AM

Hi Celia,

I agree with what Janey said. But I'd like to add that you and your doctor should consider the severe warnings against use of prednisone in scleroderma patients, and especially the risk of developing pneumonia! See:

Glucocorticoids, Steroids (Prednisone) Warnings for Scleroderma
Corticosteroids (such as prednisone) strongly increase the short-term risk of developing scleroderma renal crisis (kidney failure). It also causes a 70 percent increased risk of developing pneumonia. It is crucial to avoid corticosteroids in patients with systemic scleroderma.

Please talk to your doctor(s) about this.


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 11 October 2007 - 09:31 AM

Hi all. I know this is an old thread, but we have found a couple of posts in the trash can that should not have been deleted and I want to make sure they got read, even if late (in this case, the comment made by Crawler about the implications of an increased DLCO). From other posts made on the day, there seemed to be some technical glitches going on. My apologies to all.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#6 Maddy07

Maddy07

    Senior Bronze Member

  • Members
  • PipPipPip
  • 38 posts
  • Location:Sumter, SC

Posted 11 October 2007 - 04:29 PM

Oh Celia, your post is screaming my name...as in...are you living my life? lol

1. I too was put on prednisone for SOB, dizziness, fatigue, etc... I had surgery for somethign else while on it and had to up the dosage (when taking steroids, any stress such as infection or surgery makes your body need more of the steroid). The higher dosage affected me in a bad way and THEN I read about how Scleroderma patients should avoid it. Of course you have to taper off and that's what I've been doing for a few weeks now. I'm down to 9 mg's a day, but I've had a kidney crisis for the first time in my life (can only guess the pred had a role in it according to rheumatologist and kidney doctor), as well as a long list of horrible side effects. I think it is because of the high dosage which you won't be on, but just letting you know it really affected me negatively. It only helped my SOB for a short time so I didn't even get the benefit for very long. Steroids do have their place but I can appreciate your hesitancy to start them.

2. If you read my other posts you'll see I was just diagnosed (yesterday) with PH. I'm still processing it and wrapping my mind around it. Ten years ago there was no real treatment for it and the outcome was dismal. Much of the information on the internet still quotes prognosis based on that. However, there are several medications out there now that allow people to really life a full life, and the prognosis is much better, even with PH. The key is to catch it early. IF and that's a big if, you have PH it's important to catch it early. You do need to seek out the tests that can help you in ruling this out, or getting the diagnosis and moving on to treating it. The sooner the better!

3. I'm glad you're getting an echo. That echo can give an ESTIMATE of the pressure inside your pulmonary artery. Again it's just an estimate. Normal pressure on echo is 25 and mine was at 35, just enough to make us do more tests. Then the pressure during my heart cath was really high (80, so remember it is just an idea of the pressure). If it indicates that it is high at all, the next thing to do would be a heart catheterization. It's the "gold standard" for measuring the pressures in your pulmonary artery. They can also check your heart and how well it's working (IF the pressure in your lungs is high). The other tests can give the doctors good info about the condition of your lungs.

On my journey, I started with a pulmonologist who did a lung perfusion scan, PFT, CT, sleep study, echocardiogram, tons of lab work, and finally the heart cath (as well as the kidney ultrasounds and scans due to my kidney problems). I was also referred from the pulm to the cardiologist, the rheumatologist, and the nephrologist.

So it's been a long road and it took time to set it all up and do all the appointments, but it was information I needed. I now have a diagnosis and a treatment plan. After waiting for so long and being out of breath and tired, I'm ticked I have PH, but glad to have something to treat and work with ya know?

Be proactive and know that these tests can definitely rule out PH but it's good to do them and get the info in case you do have it. I've found fabulous information at www.phassociation.org and a message board as well. There are several drugs to treat PH now and the prognosis overall is pretty positive imo.

I've been in your exact shoes about oh... 36 hours ago. lol (my heart cath was yesterday) I know it's scary and lots to process but hang in there and take care of yourself and make sure those doctors are doing the right tests. You should also ask your doctor how many people s/he has treated with PH...need to know how familiar s/he is with it (and know what tests to order) because MANY doctors just don't ever have patients with it and they don't know much about it. Make sure you have a doctor who knows what's up!

Good luck and let me know if you have any questions about the tests. They're all fresh in my mind and I can definitely tell you what to expect if needed. :)

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

#7 Maddy07

Maddy07

    Senior Bronze Member

  • Members
  • PipPipPip
  • 38 posts
  • Location:Sumter, SC

Posted 11 October 2007 - 04:53 PM

Sorry, I feel silly..didn't realize it was an old post. Ack!
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

#8 summer

summer

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 522 posts

Posted 12 October 2007 - 12:12 AM

Hi Maddy,
Don't feel silly, I'm sorry about your diagnosis of PH, but at least you know now why you are feeling the way you are, your head must be spinning.

I'm not sure whether you have read any of my recent posts, but I saw my Cardiologist on Tuesday of this week to get my Stress/Echo results.
He mentioned that everything was normal except of my exercise intolerance.
My Cardiologist has prescribed me a Beta Blocker to try and slow down my heart rate, he is supposed to be the best in his field in diagnosing PH.

I am a worrier and still have my doubts regarding whether I have PH, but have to trust him for the time being. He said if my PFT numbers are down in the next six months, we will have to see.

Take care Maddy, and take one step at a time and you will be fine.

Celia :)