Newly Diagnosed--now what

[Guest guest]

Ok, you know now that you have sarcoidosis. What happens next?

Primarily, the drug of choice is prednisone. They may start you on a dose of 60mg daily or every other day. Then you will spend the next 6 months or more weaning off this medication.

Prednisone is a steroid, and it has the ability to bring inflammation down very, very quickly. The side effects are weight gain, mood swings, high blood sugars, water retention, and possible hardening of the arteries as well as osteoporosis. It can also cause early cataracts. But you will feel pretty good! You will have energy and a "can do" attitude. For some of us, that meant that we can do anything, move mountains, make molehills out of mountains, and swing from high places. But yo will feel pretty good!

If you still have progressing symptoms, you may find the need to get off the long-term steroids, and find an alternative immunosuppressant. There are many, and some of the most popular choices are Plaquenil, Methotrexate, and Imuran. There is a great website that gives you the different drug catagories, Anti-inflammatories, DMARDS, Biologicals, Pain Medications. This site is www.arthritis.org. I highly recommend that you look up this site, and read up on the medications for inflammatory diseases, and also look at the Vitamin and Mineral Guide, along with the Drug Guide.

It will be important to learn to listen to your body, and when you need to rest-- REST! Take your medication as directed, and make your appointments. Document the side effects that you have from your medication, and what has improved, and what is progressing. Keep a journal!!! Take it with you to your doctor appointments.

When blood tests, xrays, MRI's, CT's, and office exams are done, sign a release so that you will be given a copy also. Keep this with your journal. Take it along with you to the other specialists. That way they can see what has been done, and what still needs to be addressed.

You can also plan on taking copies of the Xrays, MRI's and Ct's with you-- so that they can be looked at by each MD. You'll need to sign releases for that also. Hand carry the films!!!!!!!!!! Nothing is more frustrating that calling the office, telling someone you want the films to be at the Rheumatologists office, and you drive 100 miles to your appointment, and no films! So hand carry them!

What you can plan on is that you will need to develop a team of MD's. Each body part has it's own specialist and most often, they don't like to trespass on the other specialists domain. (I know, it's not at all cost effective...)

If you have found a article, or have questions about your treatment-- write these down. That way when you are in the office, you won't have the brain fart moment and forget what you really wanted to ask. Take a friend or family member with you. Let them put their chair in front of the door, so that Dr. prettypants can't escape without covering your questions. You pay them-- nicely, and so you deserve the service. If they get pissy, call them on it. Let them know that you respect their knowledge, and you know that you may be the only sarcoidosis, or systemic or neurosarcoidosis they may ever see.

This isn't because sarcoidosis is rare, it's because it is that underdiagnosed. So you will be there contact for information about this disease. They get the articles in their New England Journal of Medicine, and JAMA (Journal of American Medical Assoc.) but they also got 8 other magazines from the drug companies with "use my drug" topics- plus all the dictation they do daily, plus all the lab, xrays, etc that they have to go over, and the journals have a tendency to be the weight that holds the pile down and keeps everything else from falling off the desk.

I refer all of you to our ARCHIVES AND LINKS SECTION of the group site. This is because we have the informationt there about what tests, exams, ct's labs and all that you will need to learn about your disease.

It also contains information on filing for SSDI. So take advantage of this information. It is free to you, and you can print it out and take it to the MD with you.

With 500 members, and 5 or 6 yrs we've been online, the information we've shared is excellant, and continues to be updated weekly. (Almost weekly, depending on how sick the moderators are also-- as both the owners and moderators are patients also.)

You will see the site addresses listed below, so scroll down, the chat times, the LINKS and ARCHIVES, and the choices on how you want to see your emails from the group are all right at the bottom section of each and every email.

Wishing you empowerment in this journey,

Tracie

NS Co-owner/moderator

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