Questions to ask Pulmonologist at first treatment discussion

I have just been diagnosed and will be seeing the pulmonologist this week. I have been reading the discussions and have so many questions about the medications. My doctor mentioned Prednisone and Methotrexate - sounded like maybe a combination, but that was before I was diagnosed and all the tests were back. I don't know what stage I am in, but I already have a lot of scarring and fibrosis in my lungs. I really need something to shrink the lymph nodes and help me breath easier, with the least side effects.
What questions should I ask my pulmonologist when I see him this week?

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I would ask the following:

What stage your lungs are. The pulmos usually stage you. Don't freak out too much about it, because it just shows how much scarring there is on your lungs.

What are the medication plans?

Pred is usually first line. Methotrexate is usually next.

How often are we going to check labs? I reccomend at least monthly at first.

What are we going to use as a sign that treatment is working? Some use certain lab values, some do CT or PET scans to evaluate the disease.

What side effects can I expect with the medication? All of the sarc meds have side effects. Some, like pred
can cause diabetes, and it's good to start the process with a H1c test to test for diabetes, or check fasting blood sugars.

Get your eyes checked yearly.
Don't use excess calcium or vit D. Sarcs vary in calcium lab values, but excess sunlight or other Vit D
can make you sick.

Eat as healthy a diet as possible.

Good luck and God bless!

Bev

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thanks bgreis, I also am newly diagnosed and have been waiting a month to see a pulmonologist. It is hard enough and stressful to wait this long to talk to a doc after the dx that may know how to treat me. So I appreciate someone putting the first visit into perspective, I did not know what to expect-my doc knows nothing about this disease so she did not prepare me at all. I had a PFT done by my PCP's office and I must of passed OK- it was an awfully hard test to do. I had a chest xray that must be OK but it was read a regular radiologist- I do not know if they are trained to recognize sarc? I can not believe how many Doctors do not know about this disease.Thanks for your info- if you have any other advise for the newly diagnosed I would surley appreciate it

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Thank you very much, bgreis. These sound like great questions. I will ask them all.

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I am newly diagnosed as well (April 2009). I was so scared and did not know what to expect and joined this website which has been a blessing. It took about 3 weeks to see a pulmonologist. I had a list of questions but he could no say much until I had the biopsy done. Before biopsy, he said from CAT Scan done by primary doc, it looked like Stage I of sarc but can't be certain. I had a lot of swollen lymph nodes in my chest. After the biopsy, he said he found the sarc actually on my lung so I am actually Stage II. So I would advise you or anyone newly diagnosed, don't be afraid to ask questions and demand answers. Make sure the doctor is really experienced in Sarcoidosis. I asked my pulmo about his experience but his actions doesn't prove to be so. He has not done any blood work on me so I had to go to my primary to ask for a full work up about 2 weeks ago. I am trying to find another pulmo. but am limited in my area. I am on prednisone because I had chest pains...was 40mg now down to 5mg. I go back for CAT Scan in October to see how the sarc is doing (6 months time frame). Oh, also, keep up with all your tests like Cat Scans, xrays, and lab work.
Let us know how everything goes and post your questions here because everyone is so helpful in sharing information..it helps a lot.

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Yes, prednisone is the mainstay tx (treatment) for sarcoidosis but some physicians will also start you on MTX (methotrexate) along with the prednisone so you can hopefully be weaned off prednisone. Prednisone "kicks in" quickly whereas MTX may take months to "kick in". Some people have no trouble taking either of these meds while others canno tolerate them.

You definitely need to have lab work done so find out the calcium and Vit. D levels. When taking prednisone, the production of Calcium is reduced which can lead to problems with your bones. Depending on your calcium levels your physician may want you to take a calcium supplement. Regarding Vit. D, the majority of patients with sarcoid are told to avoid Vit. D but this also depends on the results of your lab work.

If you haven't already had one, do have a PFT (Pulmonary Function Test). A pulmonologist who has knowledge of this disease can "see" it on a regular chest x-ray. A radiologist will see that there is something wrong with your lungs, but your pulmonologist should be able to tell you what the problem is.

Before having a lung biopsy, ask if you could has bronchoscopy with a bronchial lavage in which your doctor can get a sample of your lung tissue. This is less invasive than a lung biopsy.

Do ask about drug side effects.

As mentioned in a previous post, do schedule an appointment with an opthalmologist b/c sarcoid can cause very serious problems in your eyes.

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Hello everyone,
Thank you for the information. I met with the Pulmonologist and they did a PFT (which showed restrictive and obstructive disease). I have stage 4 pulmonary sarc. Because I have scarring and fibrosis in addition to a lot of swollen lymph nodes, the doctor put me on 40 mg/day prednisone. I wasn't happy, but asked all the questions (my doc is very knowledgeable about sarc) and she convinced me that this is the best way to start. I have to do an eye exam and a bone density test right away. Because I just had the lung biopsy, all the other blood tests and ekg were already done and looked o.k. I will follow-up in 8 weeks. My doc said that we will eventually add methotrexate once my breathing gets better under control.

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