Hello All - Where Do I Start?

Tell us what you are using to treat your MS-- and how you are doing.

Hello All - Where Do I Start?

Postby JohnGault » Wed Jan 18, 2006 11:27 pm

I am a 45 year old guy diagnosed with MS in 1997. I started Avonex in 1997 and have been taking it nonstop ever since. I am fortunate that I have very limited disability (hands, right leg) due to flareups of the MS in 1996-2000. I have had clear and clearer MRIs since the Novantrone "put the fire out" on MS for now. Still looking over my shoulder as I run this race though. Other drugs I have taken:

Avonex: I am prescribed to take one shot every five days but I have a real problem just sticking to every seven days due to the flu-like symptoms. Last December my neuro prescribed a time release form of naprosyn (Alleve) called Naprelan (500mg) which helps a lot. But staying on this interferon horse is really really really tough.

Novantrone: 2000-2003 - I had a very successful outcome with Novantrone. It stopped a steady progression of the disease that steroids and Avonex could not. My disease has been stable since getting off the Novantrone in 2003 after hitting the maximum toxicity dose allowed by the FDA. Novantrone gave me an almost three year holiday from steroids. MRIs in 2002 and 2003 showed decreased activity. MRIs in 2004 and 2005 showed no new activity.

Cellcept: 2004-Present: I have been taking 2g of Cellcept every day. It is well tolerated, though I find when I get a cold or sore throat it takes longer to recover. When I get ill, I get off of the Cellcept for 1-2 weeks and things are fine. My neuro is dropping me to 1.5g of Cellcept daily after hearing about how it affected me.

Burst Steroids: 2003-2005. I was taking oral bursts of steroids (1g) with no taper, every 2-3 months. Really quite a ride taking such a huge dose. Makes you feel like an axe murderer on days 4-5 but once you bounce back things are back to normal. Unlike the low doses of steroids that I had been prescribed by other neuros, the bursts have absolutely no visible or weight effects. WARNING about bursts and steroids in general. Your neuro probably told you that steroids would ruin your joints and you did not give it much thought. Well, the head of my left humerus (sp?) started to disintegrate last spring due my steroid use. One operation and a new titanium joint head later I am ok, but wow, what a painful operation and recovery! No more steroid for me for awhile.

Provigil: 2003-Present. Provigil is a huge help for fatigue and allows me to live a normal work and home life with small children. I take <100mg of Provigil around lunch time and it keeps me from dropping due to fatigue in the evening. I have stopped taking Provigil after increasing exercise and taking supplements (acetyl l carnitine) have boosted my energy level dramatically. I am now Provigil free.

IVIG: (intravenous immunoglobulins). My neuro has prescribed IVIGs for me and I am pending approval from insurance. I see very little literature about this treatment and am curious if anyone out there has any knowledge or experience with IVIG infusion therapy. Using blood products extracted from strangers is a bit scary for me.

Exercise: I try to get on an eliptical for 30-40 minutes at least three days a week. Several years ago this would have been impossible, but the burst steroids and brief break from the disease have allowed me to start exercising again and it is a huge energy boost and mental boost.

Best regards to all you out there is MS-land. I will be out there looking at your posts and holding you all close in my thoughts and prayers.

JohnGault (not my real name, just a character from a book)
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Postby LifeontheIce » Thu Jan 19, 2006 7:48 am

Welcome! Now we know who is John Gault. I invite you to visit also http://www.CPn Help.org/ to meet more of us
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Postby MacKintosh » Sun Mar 05, 2006 7:42 pm

JohnGault (okay, what book is it from, because it seems so familiar to me - spy novel?) - Let me ask you if you felt better for awhile when they megadosed you with antibiotics after the joint surgery? Most of us doing antibiotic therapy for MS noted we 'felt so much better' whenever we were given antibiotics, but, because we didn't know we had MS or chronic fatigue or whatever our chlamydia pneumoniae infection had devastated us with, we didn't put two and two together. Come check us out (we're not quacks; there are a bunch of medical pros both as patients and as contributors on the site) and see what you think. I just could NOT buy into the autoimmune theory of MS and I really think we've found the right answer in cpn infection. How cool if we can basically cure not only MS, but CFS and about a dozen other diseases caused by this nasty bacteria. Tens of thousands of people can regain their lives. Not bad, by my standards.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Postby SarahLonglands » Tue Mar 07, 2006 5:27 am

Hello John, best not to look over your shoulder whilst running, but do take note of the above two posts! Also take note of many of the Regimens posts.

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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