Sarcoid and pulmonary arterial hypertension

Hi All, I am a stage III pulmonary sarc with lymph node and liver involvement. I also have PAH (pulmonary arterial hypertension) which is being controlled. Does anyone else have these two diseases?

Edited September 25, 2011 at 3:02 pm

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I have sarc and PAH. And I live at 6500 feet, which is not good. I am on oxygen most the time and they are trying to control the PAH with drugs.
God bless!
Doug

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Wow Doug, you are really living pretty high above sea level and I feel for you. I know that makes a difference. Are your docs prescribing one of the two meds I mentioned.: Adcirca (Cialis) or Revatio (Viagra)....Which ever, they work and really have helped me. Hopefully whatever they are giving you works for you. The two diseases are a real pain together but I make the best of it daily.....I use liquid O 2 so I really get around better. If I only need one tank I throw it in a nike bag and if I need 2 tanks I use a rolling back pack. I refuse not to live my life.......with the thin air you may have to go a bit slower. Do what you must but don't stop living you life too!!!!!!!!!!

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My PAH was controlled with prednisone. I think I should be taking Cialis and Viagra every day and my girlfriend thinks it would be a good idea too, but alas my pulmonologist has not seen the light yet.

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Hi, Your pulmonoligist probably can not prescribe what you need. You must find a cardiologist that specializes in PAH/PH.* That Is truly your best bet. Prednisone is not going to get it for the PAH. It does help with the inflammation from the sarcoidosis.......also in the trials for the meds only the men got the added benefit that turned out to be the real money maker. :-) So, you both could benefit. Lol
Find you a good Cardiologist. Have you taken all the test: Right& left catherizations, chemical stress test, treadmill stress test, and an Echo. Was it your pulmonoligist that discovered the PH? Because they can actually hear it... My pulmonoligist heard it first , put mevon O 2 and sent me to the best Cardiologist/ who specialized in PH. That's what should have happened to you. Get on it for your own benefit.....good luck!

You know depending in who you are talking to.....*PAH: Pulmonary arterial hypertension and PH: Pulmonary hypertension are the same thing!

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Doug, all those test also determine if the pulmonary hypertension is a bi product from the sarcoidosis. Mine is because of the sarcoidosis. :-(

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Sarcoidosis had been known to cause pulmonary hypertension. If you have secondary pulmonary hypertension, meaning it was caused by another disease such as sarcoidosis, the treatment recommended is to treat the underlying condition which in most of our cases is sarcoidosis. Prednisone is a treatment for sarcoidosis and hence could have definitely helped with biodesium pulmonary hypertension.

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You are absolutely correct however, prednisone was not enough for me....that's why the additional testing was needed which proved it wasn't enough! If that pulmonary artery is not relaxed to allow the proper blood flow ....you feel as if your lungs and heart are being squeezed. Thats were the additional meds make a big difference.... Testing WILL determine that.

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My diangosis was from an echocardiogram by a cardiologist. He only treats with loop diuretics. Prednisone knocked out the pulmonary hypertension and my pressures are normal now. I take the additional meds twice a week for another reason, and I do feel better on those days. (So does my girlfriend!)

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Lol whatever works :-)

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Ya'll,

Here is what I believe to be the delio. Pumlmonary Arterial Hypertension (PAH) is a bad thing and needs to be taken serious. It has been the downfall (right heart failure) of many sarc patients if not treated, and sometime no treatment works. I was tested by echo many times and it is not a real accurate diagnostic but it can be a good prediction. I was given a right heart catheterization to determine the exact pressure and make the diagnosis. While some cardiologists specialize in this, we must remember that the right side of the heart is really the pulmonologists domain. Many cardiologists only focus on the larger left side - since that is where most the problems occur. But there are cardiologist specialists in PAH. I am also on MTX for my lung sarc. My doctor told me that PAH requires testing of several treatments to see which works. She said that when they do my autopsy they will likely find granulomas in my pulmonary arteries. For some people with sarc - even though the PAH is a result of a lung disease, treating the lung disease does not necessarily treat the PAH. Pred and MTX did not help my PAH, in fact it just got worse.

For me Oxygen and Revatio appears to be saving me. It is unfortunate that the drug companies take viagra, divide it into 3 smaller doses to be taken through out the day and charge ten times as much for it. My prescription is 1,600 dollars a month for what the doc says will likely be the rest of my life. Don't even get me started on the drug companies.

That said - I am grateful for what I have, and the Revatio gets my oxygen up to 90 percent, which is a miracle. Prior to that - I was 87 or below. I still need to be on it at night or when the barometer drops. It is amazing that the PAH tracks precisely with elevation and air pressure. I may never be able to fly again. 8,000 feet of cabin pressure would do me in without a good supply of oxygen. When I go to lower elevations my oxygen gets even better.

The hardest thing for me is that the PAH has robbed me of the ability to do hard work. I am a very fit person (I used to hike and climb mountains regularly), and going up hills or stairs now can drop my 02 level to 75. Because of that - it is harder for people with PAH to exercise and keep the weight off. I have found that the Revatio helps me walk about 2 to 3 miles a day (small walks several times a day), which is really important for us. Exercise and eating healthy may be one of our best treatments. I watched recently the documentary "Fat, Sick, and Nearly Dead". It inspired me because those two men have diseases similar to us and I went right out and bought a juicer and now juice regularly and eat more fruits and vegetables. I believe that has made a difference as well.

Anyway - I am now rambling...
God Bless and Protect you ALL!

Doug

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Doug, you are right on target about PAH...I had a left and 2 right heart caths....my numbers are not fantastic but pretty good now. I also started out on Revatio 3Xdaily for 2 years....I often missed that 2nd dose because of taking so much other medication/vit/supl and trying to space it all out. My cardio specialist had me try Adcirca 1X a day and I find it to be much, much better...I don't experience the down time as I did when it was time to dose again on Revatio. I too am taking Medrol daily and MTX( 10 mgs weekly) for the lung,lymph node and liver sarcoid. I am on O 2 24/7. I sleep on 3 Lts and excercise up to 8 Lts....oh well, I adjust my O 2 accordining to what I am doing as to keep my O 2 levels up because I also will drop to 87 and below quickly. So I understand everything you are saying first hand and it is serious...very serious...I havn't flown since all of this but friends have that are on O 2...Yea the cabin pressure is really a factor for us.

You also seem to be on target with exercise and eating right....same here....good job and you will love you juicer. Yoga is also a fantastic way to stay limber for the walking.

Try to stay positive and still do some of the things you enjoyed before. I think that's how I survive this madness. When I don't feel like going and doing I don't. However, when I do feel pretty good I make the best of it. Make sure you rest and practice your deep breathing often. I have been out and run out of O 2. I know how important it is to save oneself.........I laugh out loud everyday and find joy....It is one of the main ingredients for me on a daily basis. I meditate, pray, excercise and I still do everything in my home from laundry to playing with my 2 big dogs. Do things take me a lot longer to accomplish ....absolutely ( while on 127 ft O 2 tubing). Do I sometimes almost break my neck...absolutly.......I recover and keep it moving.......:-).

Best wishes to you and good luck.....stay focused and find your center....you seem to be on the right track!!!!!!!

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Hi
I have Pulm Sarc and PAH on exertion. It is believed that my PH is secondary to my Sarc, as this also has a vascular involvement. My treatments have all failed and am now back on Mycophenolate and Nebulized Anti-biotics, Prednisolone for Sarc and other treatments are lasix,Spironolactone,Pregabalin, Warfarin,Plaquenil. Also on Oxygen 24/7. My PH was diagnosed via Right Heart Cath and initially treated by Bosentan, but this failed when I developed liver problems.

My PH was diagnosed before Sarc was found, it is thought to no longer be an issue, however I am certain that some of the problems I encounter on a daily basis are because of PH. My advice is to find a good Pulmonologist, the gold standard to PAH diagnosis is RHC regardless of whether you have Sarc or Not. A good support network is available in the US - see www.phassociation.org.

Pls email me if you want any more info. Good Luck.

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Does anyone have heart palpitations?
I have pulm. Sarc. Stage 1 but have been having palpitations daily.
Thanks!
Lisa

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I do not have pulmonary hypertension, but anyone with lung sarc is at risk. If you haven't had one, you should ask your doctor for a cardiac echo to get a baseline. Mine, thank goodness, was normal.

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I have sarc and pulmonary hypertension. I use Isosorbide twice a day for PAH and Pregnoisone for the sarc. Isosorbide is cheaper than Viagra and works fine for me

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I was diagnosed with pulmonary hypertension after an echo. The report was incorrect and we don't even know the correct number. On the test numbers it said one number and in the summary another. I just had another echo at my pulmonists suggestion. The cardiologist just said it is from your sarc...no treatment...and no other info/or follow up was given. This scares the crap out of me. I feel like no one is taking my problems seriously. I currently have to go to NJ to help my sister who was just diagnosed with cancer. So I have to miss my pulmonist appointment.

I want to go to Cleveland. I am under no treatment for my sarc and I am having different symptoms, chest pain, muscle twitches, pain in my joint, lightheadedness, sweating, pain on my right side near my ribs, all this in addition to breathing difficulty. Sorry to t/j I am very scared of my symptoms and lack of treatment. (Believe me if I don't need prednasone I don't want it. I just feel I am getting worse. :(

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Eileen, you should be very concerned about what you are experiencing with your body. I know first hand about always puttting myself last. Think about this... If you are not well, how can you be the rock your sister needs... Sounds to me like you are experiencing some of the very symptoms I went through before being diagnosed properly. I have been very, very blessed to have a pulmonoligist/ critical care specialist who was fantastic... I do believe the "critical care" dynamic does make a difference in how you are cared for. I have a fantastic cardiologist who specializes in PAH. He also helped to write the Patient Manuel on PAH.... Because the two doctors worked together and got me the proper treatments I have done pretty good... They are relatively pleased ...even though I am still progressing and I won't go into remission....:-( But I do pretty well and I don't look like anything is medically wrong with me. You must find out what's going on before you get worst....

Make sure you love and take care of yourself so that you can help your sister!

Best wishes to you both.

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One of my previous doctors is at the Cleveland Clinic now and I would never have changed doctors had he not left Chicago. He was my pulmonoligist/critical care specialist. Absolutely fantastic from his bed side manner to his knowledge of sarcoidosis and PAH.... His name is Dr. Umur Hatipoglu. He actually heard the PAH in my lungs and explained to me what he heard. He then got me in to see the best of the best in Cardiology at the UOC who specialized on PAH.... Just an FYI and I hope this helps you. Again don't forget to take care of yourself.

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Hi ialso suffer. With pulmary. Hypertension and sarcoidosi o oxygen at 18hrs aday and prednisone- purbac(100mg) aserpress(100mg) but condition only worsening__severe chest and back pain as well doc says there's nothing he can do since I have end stage sarcoidosis. God bless you all and take care

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Oh sweetheart I am so sorry... People that don't know really just don't know....everyday is a blessing for me no matter how I feel... I am thankful to be able to do simple things people take for granted. Bless your heart. Stay peaceful and loving.

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