IVIG Blues again...

Spring is coming... The pears are budding up!

I continue to suffer terribly for three days after the infusions, whether its 2 days or 3. This time I sailed through each treatment day and kept up with my walking and exercising. It really hit me Friday morning with fatigue, pain and stiffness. I did manage to wimp my way through Pilates training then collapsed and slept most of the day. I had been walking 30 minutes before the treatment which was so good for me and was building up weight and stamina and some muscle.

Saturday I full expected to perk up in the afternoon, but had to drag myself around the block. It took everything I had to make it in one piece without calling for assistance. How weak is that? i am trying so hard to improve but its two steps forward and one step back. Not exercising will cost me some muscle and kill my appetite. I still need to gain about 10 lbs. At least I have put on 5.

Sunday today. I woke up congested and feeling fluey like I was getting Dennis' cold. I kept trying to shake it off and do things, and failed. I sure hate losing 3 days with IVIG Flu to this treatment each time, 6 full days a month, but what else can I do?

This afternoon the sun came out but the temps never got up to the mid 60's like they said, instead hanging out around the 60 degree mark. With the wind, it feels like about 45! I am skipping the walk today. I just don't see it doing me much good. I did do my weight lifting and as much stretching as I could but non of it was comfortable. Advil didn't touch anything but the headache. At least that part is over.

Tomorrow I go for the first of the cervical injections if I wake up feeling semi human. I hope I am not too sick to go, because this course of treatment might really help the pain in my hands. Then the lumbar for the back, legs and feet. Not going to be a fun month but hopefully it will all be worth it.

Tuesday I see the neurologist again. I hope she has some information on Ampyra.

MS marches on. Not fun. Not at all.

The rest of the IVIG...

Third day went well too, so well in fact I went for a walk and managed 25 minutes at a good clip.

Boy, did I pay for that! About an hour after I got back I started the ugly headache and took an Advil. About 5 in the morning I woke with a screaming headache. Ouch. Took an Advil, ate a banana, and put an ice pack on the back of my neck. By the time I got to the infusion center Thursday for my last round for the month I was begging for the headache stuff as a pre med! Luckily it takes the headache away in about 30 seconds.

Final infusion went well but I was pretty weak on the way up and had Dennis escort me as i was afraid I might pass out. I did walk down fine on my own though.

I fought the headache Friday and felt really puny. Some of my buddies at the infusion center said they found the worse the side effects, the better the result and that the results are cumulative. This was a bad one so hopefully I will gain a lot of benefit. Would be nice since Christmas is less than a week away!

Today, Saturday, I feel a bit better but still have flagging energy and an upset stomach. Didn't sleep well last night and that's always a problem. I walked my normal half mile in 15 minutes today and felt better for it and felt some unusual tingling in my legs. The kind I had as this whole MS was starting up. Maybe its reversing? I have my fingers crossed. Please God, give me some energy. I want my life back. Please.

Cheers,

J

IViG Therapy

Ouch!!! And I just thought there would be no side effects! I have now had three infusions of the drug. After Monday's therapy I felt pretty good and actually felt a very slight improvement in pain and stiffness Tuesday morning.

I get pre medicated with antihistamine (atarax in my case since I am allergic to benedryl) and tylenol for potential headaches. Didn't have any problems Monday.

After Tuesday's infusion where I only took 1 Tylenol and half an atarax, I felt really wasted and slept most of the afternoon. As the evening crept on, I started feeling a bit nauseated and started getting a headache, the typical sinus kind with a little tension thrown in. Didn't think much of it and took a Tylenol before bed. During the night I woke up feeling a bit sick to my stomach and head-achy and didn't like it much.

Wednesday, I just felt awful and crawled into the infusion room almost in tears!Samantha, my infusion nurse took good care of me! She gave me Zofran for nausea, ativan for the aggravation, and toredol for the headache. I felt better in 5 minutes and had a nice infusion.

A lady across the room from me heard what all I was moaning about and said, "IVIG flu!" I guess these are normal side effects of the therapy. Everyone there promised the headaches and agony would go away in a few days.

Everything went well until about 9 PM when the headache crept in again. I took a Tylenol before bed but woke up at 4 with the worst headache I have ever had. Even worse than the one I got when i fell off my bike head first into the stone wall on the road near my home going about 25 mph after heading down the hill after the railroad bridge. ugh. Got up and took an Advil and put an ice pack on my head and it was better when I got up at 7 AM. Took another Advil for good measure with my yogurt at breakfast and its under control today. Luckily, I didn't have any nausea.

One more day of IViG this month, then another round mid December. I am looking forward to the benefits and hope they kick in soon, like maybe Saturday? Sure would like to ride my Motorcycle around the hood again. Weather permitting.