Ms Dale C. Thurlow
MsDale@thedline.com

Sarcoidosis/Prednisone

There are many avenues for Sarcoidosis information; including support groups, newsletters, conferences and today many in the Sarcoid community have now reached out in ways that were never possible without the internet. It is with this same dedication to those afflicted with Sarcoidosis that I wish to reach out to you also.

When you think back of how things change in all aspects of modernizing, my… how far things have come! Black and white Television - became color! We can "zap" things in a Microwave cutting preparation in half - saving "time." Where we were given the opportunity to pour though book after book in our quest for information at a library - with a "click" we can now access the internet and see it on a screen right in front of us! Medical science in respect, is making the same advances, but sometimes at a slower pace due to the length of time it takes for busy doctors to get the information and then filter it down to their patients.

Sarcoidosis is a progressive and debilitating disease. It causes more havoc in a persons life than they can even express at times! Even to your own doctor! This disease plays by no rules and has no bounds as where it can attack your physical being. You have so many symptoms, you even question "yourself!" -- "How can one body feel like it has SO many things wrong?" And times when you have a list as long as your arm of things you want to spurt out to the doctor - you leave the appt feeling like you may have covered two or three - and walk out the door frustrated….asking yourself… "What really changed from the time I just spent?" Many of us have answered - "nothing." You think, "I am still sick and feeling like horse puckey - even though I am taking the drugs they claim is the treatment for Sarcoidosis."

I say this…because I have been there. Prednisone? Oh sure… it gives you "false" energy and a FALSE sense of well being. It also wrecks more havoc with your body than you will ever be prepared for. You begin to notice your cheeks are "fuller?" - they give this Cushing Syndrome feature a name "moon face" -- your blood pressure starts to rise…you may develop cataracts and/or glaucoma - you may find yourself diabetic and dependent upon insulin shots - your bones become brittle… prednisone induced Osteoporosis… - and the "few" pounds extra you see on your scale at the beginning..…becomes this figure where your torso is completely distorted… where one time you could bump into a table - rub the spot without thought and go about your business….. now you develop this incredible "bruise" -- A cut or scrape? - boy… nothing heals like it used to!! And if any woman reading this has experienced stretch marks from pregnancy, not to worry…men do not have a one up on you! The marks caused by Prednisone "Petechiae" - do not discriminate. Oh, and not to forget the "buffalo hump" - a very unsightly protrusion, of course...it can be covered by turtlenecks ( quite uncomfortable in summer months ) or by growing your hair longer. You know...the out of sight....but not forgotten technique.

The list of side effects from popping those lil’ white pills? - it goes on and on… You do not need to take my word for it - visit a site by a well known medical facility John Hopkins - see the pictures for yourself. Johns Hopkins Vasculitis Center Discusses Prednisone Treatment for Vasculitis

Some of you are new to Prednisone, these side effects are "news" to you, as is the medical terminology stamped to them - new to your vocabulary. Some, who have been on Prednisone - need not look at the pictures - as they can just look at the image in a mirror and see the reflection of just what Prednisone has done. When and if you have tried to lower the dose - or even get off this drug - how many have relapsed? How many of you can say "that if you knew NOW - what you did not know THEN - you would NEVER have taken this drug for the duration you did... or at all!!

Yeah - at the time...that was what was offered to us and were told it is the drug of choice - and neccessary. We were Sick - We were scared - uncertain - and trusting. But as with everything else we have experienced in technology and life - Medical science too can find better ways to treat things! Do not beat yourself up for yesterdays... I myself have a history of Prednisone, Methotrexate, Plaquenil, Solu Medrol IV's and a list from A to Z of other drugs I have used in my past to try and battle the Sarcoidosis.

I do ask that you allow your educated and open mind to explore "new science" take the initiative, your doctor too is learning... Some of the most important advancements in sarcoid pathogenesis and treatment, are a click away from your seat at the computer, for you to read and judge for yourself. Check it out for yourself - a treatment referred to as The Marshall Protocol.

Dr. Trevor Marshall is a scientific researcher who dedicated himself to develop a treatment to relieve symptoms and better the quality of life of those afflicted with Sarcoidosis. Why was this important to him??? He himself is just like us - diagnosed with Sarcoidosis. I would say that makes it a very high priority in his life, wouldn't you? He would not be advocating or staking his own reputation on something that he has no proof to back up. The medical papers and facts are out there for you to explore at http://www.sarcinfo.com/ and http://www.marshallprotocol.com/

All new medical discoveries take time to get implemented and get passed down to the "patient" -- but for many... the patient educates the doctors. In this case... I am truly glad I did just that.

Sincerely,
Ms Dale

(P.S.. -- Prednsione is NOT part of this new treatment. Some of the side effects of Prednisone are reverisble when you stop taking that drug...some are NOT. Please go above and beyond educating yourself on alternatives...beyond the OLD)