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This has been a really bad summer for me, I have been on disability since June 11 and probably will be until mid September. I have had a severe bout of pernicious anemia. It started in June and I am just now starting to get up and about.

In June my doc switched me from Rebif to Alferon for my MS. Within a month I was in bed with pernicious anemia (decreased production of hydrochloric acid and deficiency of intrinsic factor which is essential for B-12 absorption). My white blood count was dangerously low - 0.6, (4.0-10.5 is normal), my calcium was low - 2.8 (8.5-10.6 is normal), and my Vitamin D level didn't even register, there were others that came up low on the labs but I can't remember them all.

After some testing, my endocrinologist attributed all of this to the Alferon; it leeches everything from your system. So I immediately stopped taking it. It was then hard to keep the levels back up. Once we would get them a little higher they would drop again. For the first month or so I just laid in bed semi-conscious. My body hurt in ways that I had never experienced. I had a hard time remembering what day it was much less anything else. My daughter Jennifer (18) kept me fed and watered. Slowly I could get up for 30 minutes at a time, then an hour. I am now very slowly coming back.

I just want anyone who is thinking of using Alferon to be sure to have their blood levels checked often. My Neuro said we will check it weekly when I resume it after I have recovered. HA! I'm not going back on it!!! I will go back to Rebif.

A dear friend is going to ride in the HEB MS 150 Ride to the beach and I am going to be her Pedal Partner!. I am so honored!!
Check out the website.
http://biketothebeach.ms150.org

More later,
~Jan

Be sure to check out my MS Links page for some great sites!



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August 21, 2004