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Quote:

Originally Posted by AnnieB3 (Post 1087951)

Has anyone told you to take calcium and vitamin D while on Pred? Any other advice, such as some sort of omega-3's while on it?

Annie,

I put the following smoothie together earlier in the year, with the great help of many in our forum:

The Potassium is a recent addition after the hospital. It was a bit low and I was not getting enough from two or three bananas that I was eating a week. It makes a 64-ounch batch.

I have one 16-ounce portion at my first meat, along with 1/2 cup of oats, and 1 cup of kefir. The 3 remaining 16-ounce portions throughout the day, or sometimes, into the next day. I blend it in a VitaMix.

White Grape Juice (625)
½ Cup Imported Raw Almonds (275)
½ Cup of the Ultimate Meal (255)
2 oz 100% Soy Protein (120)
1 Banana (105)
1 Cup Kale (33)
1 Cup Cabbage (15)
1 Cup Spinach (6)
1 Cup Broccoli (65)
1 Cup White Grapes (62)
2 tablespoons of freshly ground Flax Seeds (90)
Splash of Lemon Juice
Splash of Lime Juice
1 inch Cube of Ginger Root (20)
2000 mg Vitamin C
1200 mg Calcium
8000 IU Vitamin D3

Total Calories: Around 1600

Supplements, most included in smoothie

½ Cup Ultimate Meal dietary supplement
Calcium - 1200 mg
Vitamin D3 - 8000 IU
Ginger Root - 1 inch cube
2 a day - 1000 mg Omega 3 Fish Oil - EPA 300mg - DHA 200 mg
2 Tablespoons of freshly ground flax seeds
Vitamin C - 2000 mg
Turmeric - 350 mg
Potassium - 99 mg

Sometimes it takes me two days to finish it. It does tastes great. I do eat other thing too. i store it in the refrigerator in stateliness steel Thermoses, filled to make the bottles airtight.

-Mark-

Quote:

Originally Posted by cait24 (Post 1087399)

So sorry you had to go through all that but glad you got the IVIG treatment you needed.

Katie,

I was infused for 5 days in the hospital. It's been nearly 3 weeks since the last infusion. I got two big bottles and one small bottle a day. I am feeling very strong with a lot of energy. My symptomless are mild and appear so far to be stable, not getting worse. I've been back to 60 mg Prednisone per day for a month.

If normal antibodies were infused during the treatment, how long should my positive results last?

I will be seeing my new neurologist Tuesday afternoon. His plan is to infuse once a month for 4 months, until the Cellcept starts working.

Any suggested questions that I should be asking new neurologist? I already Annie's list. :)

-Mark-

The first and so far last time I had IVIG it lasted about 6 to 8 weeks. I must admit I felt a lot better after the 5 day course, well once I had recovered from the anaphlylactic shock that occurred on the last day that is.

Quote:

Originally Posted by Plantagenet (Post 1090044)

. . . anaphlylactic shock that occurred on the last day that is.

They infused me at a slow rate the first time, in case the IVIG induced anaphlylactic shock. I wonder what percentage of people go into anaphlylactic form IVIG?

-Mark-

Quote:

Originally Posted by cait24 (Post 1087399)

MG can turn on a dime. 7 weeks ago I could function and work full time. On 6/19 it hit 90 degrees here and I ended up in the ER with shortness of breath. I got large dose solumedrol (steroids) and no IVIG and was discharged 3 days later on 80 mg prednisone. 2 days later back in the ER again with shortness or breath, more steroids, no IVUG or plasmapharesis, discharged again on high dose steroids. I begged for plasmapharesis or IVIG and neuro refused. New neuro and 7 weeks laters, still on short term disibility, cannot function, work or leave the house. New neuro finally faxed script for IVIG which probably will not start before next Monday if I am lucky.

For me it was a convergence of three things: The Prednisone taper with no immunesuppressor, stress filled summer (cab collision), and the first real hot weather of the season, approaching 100 degrees the day I went to the ER.

Do you have to fall of the cliff before they throw you the IVIG rope?

What was the reason you were refused the IVIG earlier? How can the mess around with the breathing issue!

I hope you have the same experience that I did with the Immune Globulin. I had improvement from the first day. My doctors and nurses noticed an improvement too. I continued to improve, even after the fifth infusion--and still going strong.

-Mark-