Thursday, February 2, 2012

Steroid Wrap-Up

I began the steroids on a Wednesday night, which will be Day 1, and I took them with dinner each night afterward, as directed: 500 mg days 1-5, 60 mg days 6-7, 50 mg days 8-9, etc. The taper is down 10 mg every two days.

On my second day at 30 mg, my neurologist told me to go straight to 10 mg the next day. This was due to my blurred vision.

Pros:
-Painful paresthesias in right leg greatly decreased
-Pain and numbness in face/tongue gone
-Decreased spasticity in both legs, especially right (although on day 8 it increased again)
-Walking better? (we'll see when the steroids stop affecting my joints)
-More energy after the steroid fatigue wears off and I am able to sleep again? I do have times where my energy level is okay, which I did not have during the week before I began steroids. Day 10 was much better. Sick afternoon of day 11, but that may have been from Avonex. Better days after 12

Cons:

-Swollen, painful joints began day 4, worse days 5-6, better but continuing through day 11, minimal days 12-15
-Blurred vision began day 3, worsened day 4, worst days 5-15
-Vertigo increased (had some, became worse) days 3-7, lessened days 8-10, minimal days 11-12, bad day 13, better but still happening days 14-15
-Fatigue days 1-9
-Dizziness began day 3, better day 10, worse again day 13, better but still happening days 14-15
-Difficulty sleeping (4-7 hours), days 1-13
-Thinking more slowly sometimes through day 9
-Difficulty urinating days 3-6
-Dryness? Hands wrinkled up day 3, struggled off and on through day 13
-Headaches, days 2-6
-Shakiness sometimes began day 3 or 4, gone day 10
-Diarrhea days 2-6, took something for it every day
-Puffy face showed up day 6
-Acne showed up day 7, worsened day 9, again day 14
-Weight gain of about 3 pounds
-Indigestion/GERD increased days 2-7, back to normal day 8
-Muscle pains increased daily from day 6ish
-New freezing pain in my upper sciatic nerve--right and left sides. Days 7-9.
-New tingling along the left side of my tongue on day 6, gone, back on day 10, gone
-New pain on left side of face on day 6 only
-New seminumbness on top of right foot began on day 7
-New spasticity in shoulders/upper arms began on day 6, worsened daily through day 11, a little better days 12 and 13
-New numb strip across forehead on day 12
-New freezing pain in palms on day 12
-Numbness back in tongue on day 13
-New burning/freezing pain in right foot day 12? or 13
-New burning/freezing pain on outside of left hip day 13 bad but I think it showed up day 11
-New burning pain in lower back day 13

As to the taper, I suppose I will not know what it prevented, if anything. Obviously I cannot tell what might have happened. So far I have not had any new MS problems when coming off the steroids, except for that upper sciatic nerve pain, which happened two nights in a row (days 8 and 9). And it was significant pain. I do not know what to think about the taper. Is it just prolonging the nasty side effects of the steroids?

So let's talk more about this blood sugar thing. From what I am finding, several problems on the cons list could be attributed to this. Let's redo the cons list, marking symptoms of high blood glucose symptoms in red. And I will mark common side effects of steroids in green. Debbie was telling me about the crashes in blood sugar, so I will go ahead and mark symptoms of low blood glucose, just to see. I will mark them in blue.

Cons:
-Swollen, painful joints began day 4, worse days 5-6, better but continuing through day 10 (so far)
-Blurred vision began day 3, worsened day 4, worst days 5-10
-Vertigo increased (had some, became worse) days 3-7, lessened days 8-10
-Fatigue days 1-9
-Dizziness began day 3
-Difficulty sleeping (4-7 hours), days 1-9
-Thinking more slowly sometimes
-Difficulty urinating days 3-6
-Dryness? Hands wrinkled up day 3-?
-Headaches, days 2-6
-Shakiness sometimes began day 3 or 4
-Diarrhea days 2-6, took something for it every day
-Puffy face showed up day 6
-Acne showed up day 7, worsened day 9
-Weight gain of about 3 pounds
-Indigestion/GERD increased days 2-7, back to normal day 8
-Muscle pains increased daily from day 6ish
-New freezing pain in my upper sciatic nerve--right and left sides. Days 7-9
-New tingling along the left side of my tongue on day 6, gone, back on day 10
-New seminumbness on top of right foot began on day 7

I split the items between two colors if the symptoms were on both lists. How odd that high and low blood glucose can cause some of the same symptoms. It seems like I have as many symptoms of low blood sugar as high. But from what Debbie taught me, the body can vacillate between the two extremes.

Maybe I have dizziness and shakiness sometimes because that is when my blood sugar is crashing. And fatigue. Hm. I am really looking forward to that a1c test. I would love to have steroids as a tool I can use in the future. Sacrificing two weeks to nasty side effects is pretty tough, but if I could alleviate some of them by controlling my blood sugar, that would be great. I would probably be willing to try it again. I am pretty motivated not to accumulate disability.

And just for the record, I remember having many of these same symptoms when I did IV Solu-Medrol (steroids) in September. The main differences between that time and this one are that my blurred vision and dizziness are worse this time, and my painful joints are not as severe this time (I got to the point where I could not bear weight on my left knee last time). Also, I am wondering if that tongue tingling and face pain was about to be the beginning of a rebound relapse, which the steroids cut short. The daily central pain from my left foot is a remnant of the rebound relapse I had last time.

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