I had a visit with my neurologist today. It has been 3 months since leaving the hospital after a MG crises. I was infused for 5 days while in the hospital. A month after leaving the hospital, I infused for two days.

I am currently in my second Prednisone taper. I was taking 60 mg for two months. I am reducing my Prednisone dose by 5 mg every two weeks. I do not believe I will do the every-other-day thing this time around. I have been on 1500 mg of Cellcept for three months. By the time I get down to 10 mg of Prednisone every day, I will have been on Cellcept for 6 months. I just started the 40 mg dose.

My symptoms are present, but not pronounced. My energy dropped about a month after my last infusion. I have been experiencing painful cramps in my feet, often while driving the cab. I am also having cramps in my ankles and shins while sleeping. My doctor prescribed 600 mg of Gabapentin for the pain. My calcium is good at the very high end of the range at 10.1 mg/dL. My potassium is also good at the high end of the scale at 4.7 mmmol/L.

I have a painful hip joint. My neurologist ordered a bone density tests. He wants to check for osteoporosis.

There were a few issues with my blood tests.

1. Glucose Serum 155 mg/dL (normal 65 to 99).
2. BUN 34 mg/dL (normal 8-27).
3. BUN/Creatinine Ratio 34 (normal 10-22). -- Kidney issue -- Prednisone side effect.
4. Carbon Dioxide 33 mmol/L (normal 18 to 29). -- only 3 into the high range.
5. WBC 17.7 x10E3/uL (normal 3.4 to 10.8). -- Prednisone side effect. May improve when Cellcept kicks into action.
6. Neutrophils (Absolute) 15.5 x10E3/uL (normal 1.4 to 7.0). -- another Prednisone white blood cell issue.
7. Immature Grans (Abs) 0.3 x10E3/uL (normal 0.0 to 0.1). -- response to infection, inflammation or other stimuli of the bone marrow.

I've been consuming too many sweets. I need to cut out the almond milk coffee drink. Each one has a handful of white chocolate chips. I also need to cut out other sweets that I been eating. I should also note that I gave the sample before my breakfast. I may have only had a glass of Almond Milk more that two hours before giving the sample.

My B12 and Folate was good. I am on the low end of normal for Vitamin D at 32 ng/mL. I work night and rarely see the sun. I am currently taking 1600 IU of Vitamin D3 each day. I wonder if I should up the dose another 400 IU.

My neurologist wants me to infuse in a month. Then going forward he wants me to infuse every three months.

I need to work on the above numbers. Any suggestions will be appreciated.

-Mark-

Hi, Mark. You certainly have a lot going on!

First, Gabapentin, AKA Neurontin, can not only make MG worse, but has been shown to cause it in some people. Also, it is excreted through the kidneys and, by the looks of your numbers, is a big concern. Where is your pain (the hip?) and have they figured out why you're having it?

When they saw that elevated carbon dioxide level, they should have done an arterial blood gas. The body needs to keep those numbers in the normal range! So when you say "only" 3 into the high range, that's not the correct way to think about this particular test. Well, that and it is 4 above normal. The body needs those numbers to be in the normal range or you can end up with things such as metabolic acidosis. Please ask your pulmonologist to do an ABG (if they think it's necessary) and to make suggestions!

The kidneys are no small issue either! Only a nephrologist can tell you if those are a temporary swing in the levels or a permanent one! What were your numbers before Pred?

My Dad had kidney failure from high BP from a blown aortic valve due to rheumatic fever (oy). You do not want your kidneys damaged!

I think a second opinion is necessary. Were those levels ever run before you went on Pred? Again, don't assume that this is no big deal and that they'll go back to normal when off of Pred. Your kidneys are having trouble RIGHT NOW!

Almond milk is packed full of sugar. If you have sugar only, your glucose will spike a couple of hours later. All sugar is bad (which you obviously know). Sorry, but that's not my opinion, but scientific fact (sorry to the sugar growers on this planet, but that's the deal). And given that your glucose is high AND you are on Pred, you might already have Pred induced diabetes. Only an endocrinologist can tell you for sure. Did they check your A1C level?

What was your B12 level?

Cramps in the feet/calves can be due to poor circulation, lack of oxygen, and so many other reasons. And your test results are a look at your body in ONE MOMENT in time. Electrolytes fluctuate, as do other numbers. Muscle cramps are not only caused by those changes either. Do you have a BiPap? Do you have sleep apnea?

Don't rely on one doctor (internist or neuro) to deal with abnormal test results. You can't assume that the cause of these results are from Pred!

You should take a serious look at your diet and calculate what amounts of potassium, magnesium, etc. you are having with each meal. Seeing a dietician might help, too. If you have kidney damage, there are specific diets for those who do.

And how is your heart? When was your last EKG? Have you had an echocardiogram (ultrasound of the heart)? Is your BP elevated?

In my humble opinion, you are not having thorough doctoring. These are no small issues you bring up and need attention.

Your body is the only one you have. Sorry if this sounds like a lecture or that I'm being condescending—which I'm not. I've seen too many people rely on drugs to help them, instead of changing their daily food/water plan, etc. Our bodies are amazing, but they need our help.

I really hope you'll seek out more help. I'm fairly concerned about the way things look (at least from here). You need good specialty doctors to keep an eye on things for you and an internist to pull it all together.

Take good care of yourself, okay?


Annie

I'm with Annie on this - my first thought was prednisone induced Diabetes. A lot of the off numbers could easily (and probably do) relate to diabetes. I'm a Type 1 diabetic (have been for 25 years) and those are all the numbers I get checked every 3 months and have to watch closely. They may come down once you are off the prednisone, but they may not also. You need to be checked my an endocrinologist (in my humble opinion!)

I know the thought of adding another doctor is not a fun idea, but if I had those numbers, I would be on my docs doorstep right now!

Good luck!

It is localized to my left hip area, around the area where my back meets my butt. It seems to be less painful when not moving.

I only took one 600 mg Gabapentin last night. It worked well. I do not have the cramps all the time, but I have been cramping more lately. I do not think I will need to take too may Gabapentin tablets.

I read that some labs have a higher carbon dioxide top reference number, sometimes over 30. I will keep a watch on this

My mother had high blood pressure, damaging her kidneys. She was on dialysis for the lats few years of her life. We also transported dialysis patients too and from their appointments in the taxicab. I do not want to end up on dialysis.

What can I do to improve my kidney function?

I am going to make the necessary adjustments to my diet to reduce the sugar.

Vitamine B12 606 pg/mkL (reference 211-946)

I believe it is caused by the Prednisone. Since leaving the hospital I have had a great deal of physical activity. I have also been driving the cab 6 days a week, ten hours a day to make ends meet.

Thanks,

-Mark-

I think the Prednisone is the casue of the hip pain, my leg cramps, and the kidney issue. I have been on Prednisone for over a year now.

I am scheduled to be infused December 1st and 2nd. I will be seeing my neurologist on December 9th, and I will have new blood tests. I am also going to get one of those testing devices for blood sugar.

Thanks,

-Mark-

Mark, You need to see a nephrologist and endocrinologist. Don't mess with any of what is going on with you.

And a CO2 level isn't something you can "watch." It's something a pulmonologist should follow up on WITH you.

Annie

Mark, I also have left hip pain. Kinda weird that it is the same hip as yours. I went to a rheumatologist and she offered no help at all. I have weird pains starting in my shoulders now. I do not take prednisone. I didn't think that MG was supposed to cause pain.

For myself, I wonder whether I have an accurate diagnosis. I know that yours is correct because you had the high antibody levels.

I wonder if anybody has any ideas on this pain stuff?

Celeste,

Is the pain localized, or does it feel like it is radiating? A radiating pain might indicate a neurological cause.

My hip pain comes and goes with greater or less severity. Right now I can barely notice it. Sometimes it is quite painful, but passes in two or three days. I do a lot of sitting in the cab. It may be a hip joint issue. I will know more after the bone density test.

The cramps are most likely caused by Prednisone. I've only used the Gabapentin twice when the cramp pain was minor. I think I will be very happy to have them if the sever cramps return.

-Mark-

It starts in my hip and radiates all the way down my leg. Sometimes both legs get it. I also have involuntary jerking in my legs sometime. I told my neurologist, but he didn't do anything.

I think in my case it was eating too many sweets. I cut them out completely. I also eating some foods that purport to help with lowering blood sugar, like oat meal, cinnamon, some greens, and a few other things.

I also bough a glucose meter. Here are my readings after abstaining from the sweets for 32 hours, 104, 78 135, 102 (most recent first).

The numbers were much higher on Wednesday, 184, 229, 258.

The 258 was after a meal. I also finish off the remaining chocolate chips. I slept for two hours, and tested getting the 258.

-Mark-