Days leading up to Second treatment...

So I called my doctor and talked to her about my side effects that I experienced since the last Hizentra treatment.

She doesn't want to give me steroids because for the last year I've had IV Hydrocortisone every 3 weeks during my IVIG, and I recently had a 12-day course of prednisone. She said that it will have long-term negative effects on me and wants me to adapt and find other ways to deal with the side-effects. On top of that, I had some stomach bleeding a few months ago, and she's worried that the steroids could be a factor there. There has been some discussion in my support group about whether or not CVID patients should even have steroids due to the fact that the suppress the immune system even more than ours are already suppressed, so I'm not going to make an issue of it.

I'm not supposed to take Aleve, Ibuprofen, or Aspirin because of my stomach issues, but then she doesn't want me taking Tylenol either because it has a drug interaction with another drug that I take.

I felt much better on Wednesday morning...I still felt the threat of a headache and flu-like/sinus infection type symptoms, but I'd started using my neti-pot, and that has helped a lot. I plan to post the recipe that I use here. It seems to work better for me than oral antibiotics at getting rid of sinus infections sometimes. I found the recipe online.

Thursday...
Thursday morning I woke up feeling decent. No raging headache, and sinus symptoms pretty much under control. I got up and showered and began working. I started hydrating with water, smart water, and gatorade right away. After lunch I got very nauseous, but the symptoms went away after awhile .I thought maybe I'd been drinking too much water too fast, so I slowed way down. Then about 5:30 in the evening I got so nauseous again that I vomited violently and felt close to having a seizure. I took some Zofran (prescription sublingual nausea medication) and some clonazepam (prevents seizures). I was so weak and sick from the vomiting that I had to get directly in bed. My mom said I was very pale and neither she nor my boyfriend could find my pulse. I had to take Zofran again that night, and also took some acidophilus. I don't know what made me sick...maybe it was the CVID?...food poisoning?...delayed Hizentra reaction? Who knows...at least I didn't have any seizures and didn't have to go to the hospital either. I decided that unless I ended up in the hospital I would go ahead with my nurse appointment for Hizentra the next morning.

Eleventh IVIG Treatment

So the Hizentra did not get approved in time for me to avoid going back for another infusion at the infusion center. Once again I outlined the rates and transitions that I wanted, and hope to avoid hassles with the nurses.

I'm having my infusion right now. It's going well, and I'm hoping that I'll have very few reactions since I'm on prednisone and they gave me my normal 50mg of Hydrocortisone as well. I'm keeping them to my usual rate of 25 for 30 minutes, 50 for 2 hours, and 75 til the end. With the additional steroids and low speed I really hope this one will be a good one! 

I arrived at or before 8:00 AM, and they took me in late...maybe nearly 9:00 before they started. I was finished and sitting on the bench waiting for mom to bring the car around by 5:15, so it was at least 8 hours long. As far as reactions go I'm doing well, but I think the 2 different kind of steroids are playing havoc with my emotions. I feel like a wreck and that everything I want and need completely conflicts with everything else I need and want. I took 1/2 a clonazepam when I got home and slept for awhile, and am now listening to soothing music and playing a game trying to be calm and let go of these awful steroid emotions in a healthy way. 

Seventh IVIG Treatment

Infusion #7

Friday, June 25, 2010 

I'm getting my infusion right now, and it's been kind of strange so far. My doctor cut the hydrocortisone down to 50mg rather than 100, and then told me to cut out the Ibuprofen. 

I got really nauseous and nearly threw up and fainted when they first started the infusion. I don't know why, but I know that it was anxiety this time. It may have been because they blew a vein for the first time, and that just kind of freaks me out and hurts like the dickens! Mom got me some ice for my head, and I had to cut out the built-in bra on my tank top because it was putting too much pressure on me and aggravating the nausea.

The nurse started me at 25 cc/hr and raised it to 50, then 75, then 100. When it appeared that I would be done in 4 hours again, she slowed it back down to 75. I'm a little annoyed because I'd told her that I wanted to take the full 6 hours for it to see how much better I'll get.

Mom made a point of telling the nurse that she's recorded my infusion start time as 10:05, but that's more like the time they started the Benadryl drip. When she complained about it, the nurse dropped the speed back to 50. I'm really trying to find out what works for me, and them trying to rush it and going all over the board for speeds is probably not going to show me what an "ideal" infusion can be like.

I'm really gearing towards Sub-Q now :)

So, the infusion finished at 50 and took about 7.5 hours. I felt great when I left and was able to walk out of my infusion center for the first time rather than leaving by wheelchair! I'm so happy about that! I feel normal or maybe better than normal and I have some hope that these treatments are going to work for me now. Yay!! :D

I think next time I'll tell them to max out at 75 & just leave it there.

Update

It's now the morning after my infusion and I feel the best that I've ever felt after one. In fact, I feel like if I were working, I'd have no problem going to work within a day or so. The only things I notice today that might be from the infusion are lower backache and a headache. I took a Benadryl before bed to help with any lingering side-effects.

I'm amazed!  

Tuesday, June 29, 2010 

I had my infusion (#7) on Friday, and as I said in the previous journal entry, I tried to keep the speed of it down. I can't believe what a difference that has made to how I felt afterwards! I mean, normally I have some trouble breathing, I'm a zombie, itchy, and can barely walk during and after the infusion. Then, when I get home I have to sleep for at least 3 hours, and I'm so weak and exhausted that I can't even lift a normal glass of water. 

By way of comparison, when I left the infusion center, I felt good enough to walk out on my own 2 feet, then I only slept for an hour afterwards. I went home with my boyfriend that evening, and wasn't even concerned about being far from the hospital. Then, Saturday I went shopping at Best Buy and bought a router and upgraded my cell phone...so I was there for 3 hours, and had no problems. I did sit down while upgrading my phone, otherwise I wouldn't have been doing so well. Sunday I went to a baseball game with my boyfriend. Granted, he took me in my wheelchair to help stave off exhaustion and I wore a mask, but nevertheless it was such a tremendous improvement over any other time at least since I've started treatments, but more likely for the last 3 years since my seizures started. I started getting tired towards the end of the game, but after we got home I still felt well enough to go for a swim (another first in 3 years) before dinner. All in all it was a wonderful weekend, and I'm very hopeful that I will continue to improve! :D

Third IVIG Treatment

IVIG Treatment #3

Friday, March 26, 2010 

Today I had my 3rd IVIG treatment. I went in at 9:30 and left at 2:30 PM. I had no bad reactions except before they started the medication I had a reaction that I had never seen before to either the Benadryl or Saline. My veins turned scarlet--you could even see the red through the paper tape! The red was darkest near my wrist where they inserted the IV, but I had streaks following the veins up to my elbow, and it hurt a bit. The nurse said that it was an indication of irritation to the surface veins, and after she gave me the hydrocortisone shot that I was going to get anyway, the redness went away and the burning stopped. I was very sleepy at the time, so it didn't phase me too much. My personal theory is that the reaction was caused by the IV needle going into my vein at the inner side of my wrist. I've never had an IV there before, and it was quite painful going in.

I fully intended to sleep, but mom found donuts in the infusion center, so I had one w/ a cup of real coffee, and the sugar/caffeine combo woke me up. I ended up staying awake and watching a movie with my mom. When the movie was over, mom read to me for a few minutes, then it was time to go home. After getting back home I had some lunch and then napped for about an hour. My wrist still hurts/stings a bit. I feel pretty good at the minute, but I'm trying to not overdo it...that's kind of like telling the wind not to blow. Anyway, just wanted to write a quick update, then I'm getting back in bed.

2 days after 3rd IVIG treatment

I'm feeling weak and tired still. I had hoped to feel more energy by now, but maybe I noticed it so much after that first treatment because I was so low when I started. I slept 12-13 hours last night, and am getting ready to get back in bed again now (I've been up 2 hours). I think that if I don't feel well enough to go in to the office this week that I'll talk to my doctor about going on short-term disability. It's just so hard to get my hours in every week, and I'm truly afraid that if I don't either get in to the office soon or go on disability I'll get laid off in May. I hate worrying about financial stuff when I'm in this condition. I think I'll try to just put it out of my mind for now, and trust that everything will work out. 

Second IVIG Treatment and How it Impacted Me Over the Next Week

I had my 2nd IVIG treatment on Friday, 3/5. We started at 9:30 AM, and I was finished by 2:30 PM. The nurse said the fastest speed she took me up to was 150. I had a sinus infection as well, so on top of the premeds I was also on prednisone and antibiotics (Clarithromycin?). The premedication that I had was: 

600mg of Ibuprofen 1 hr in advance,

0.5mg Clonazapam ~30 min in advance, 

25mg Benadryl by IV,

100mg of Hydrocortisone injection

The treatment went smoothly. I slept for about the first 3 hours, and then woke up and ate lunch. I only needed 1 bathroom trip despite all the efforts I'd made to hydrate myself. Mom and I watched a movie, and before the movie was over, the treatment was finished.

We went home and watched the rest of the movie, then I slept for another few hours. 

Yesterday (1st day after treatment), I was very weak and shaky. I slept in in the morning, but was overwhelmingly hungry so I got up for breakfast. All day I felt so weak that it felt like lying down took too much effort. Nevertheless, I stayed up all day. I read in bed, and did sudoku puzzles, then I took a bath since I didn't think I was strong enough to stand up in the shower. We went out for awhile then. I'd intended to stay home and rest more, but my boyfriend suggested we get some food while we were out, and that thought was very appealing. I mostly just rested in the car while he did his errands, but I went into 1 store with him (wearing a mask), so that I could pick out some slippers to wear at his house. I got in bed when we got home and read some more, then when I was ready to sleep I realized I was feeling so shaky that I probably wouldn't sleep well, so I took a Clonazepam. I slept well and woke up hungry after about 10 hrs of sleep.

I feel better today, not strong yet, but a lot better, and I hope that by tomorrow I'll feel great! 

My main post-treatment effects have been: exhaustion, hunger, weakness, feeling overly-emotional, shakiness, fuzzy-headed feeling. It's hard to say how much of what is caused by the sinus infection, sinus infection meds, treatment, or premeds. I know that last time I had the hunger also. It seems to hit me for days afterwards, and I get ravenous. I wonder whether that's due to the antibodies making my body more able to absorb nutrients from food?

Still Exhausted a Week Later...

My First IVIG Treatment

So...I had my first half-treatment today! They had hoped to get through 24g in 2.5 hrs, but that just wasn't doable. I got lower back pains as soon as they took me up to a flow rate of 100 cc's/hr, then they treated me with an additional 25mg (50mg total) Benadryl and 100mg Hydrocortisone. then they restarted everything and were able to get me up to a flow rate of 200 cc's/hr, but then I started having breathing problems. They stopped it again, called my doctor, and had me take my inhaler. Then they restarted it at a flow rate of 50 cc's/hr and left it there. All in all I was only able to get through 1 12g bottle, so I have to go back tomorrow morning to finish up. They said they're going to keep me on a slower flow rate, and not try to get me up to 200. I expect it might be along day tomorrow. Overall though, it wasn't too bad. They brought me warm blankets, and everyone was really nice.

I took the advice of everyone from my support group and took lots of vitamins, drank a lot of fluids, and brought snacks. I did get really really hungry and was very dopey from all the benadryl. It was helpful having someone with me to take care of the little things and to steady me when I walked to the bathroom. 

I return at 9:00 tomorrow to finish off the batch. The doctor says that I should be ok to be around crowds w/out a mask after the treatment is over...not sure whether I should go with that or not...

2nd Day of First IVIG treatment

Thursday, February 11, 2010 

I went back to finish the 2nd bottle of IVIG today, and it went much more smoothly than yesterday. Like yesterday I took 600mg of Ibuprofen an hour in advance, and called my Doctor to find out whether she would agree with me taking some prednisone also. She was out of the office, so I left a message for the other doctor, who didn't return my call until 7:00 PM....my appointment started at 9:00 AM! The good news is that I made it through the treatment without a hitch, and they got me up to a drip speed of 175! At that rate it will probably still take me longer than they had hoped for the treatment, but I'd rather get through it than have problems again.  

I pretty much slept through the treatment today, and for 3 hours afterwards too. I realized that yesterday the reason I wasn't able to sleep during the treatment or even all last night is that I took a full dose of my Alive multivitamin. It's so potent and gives me so much energy that if I take a full dose I can't sleep. I thought for sure the Benadryl would counteract that effect, but even the 50mg wasn't strong enough! That's a really good vitamin! 

When the other doctor finally called, he agreed that the prednisone is a good idea, and he said he'd tell my own doctor about our conversation. I was a little annoyed that he took so long to return my call, especially since I'd expressed that I needed to know before my treatment. On the bright side though, I was able to get through without it! I'm a little worried right now because I'm having some breathing problems, and I'm wondering whether they're related to the treatment, or whether I'm reacting to the sandwich I just ate. The treatment was over by noon today, so it seems a little far removed from the time, plus when my breathing improved yesterday, it stayed improved. I'll take my inhaler and see if that helps, and if I continue to have problems I'll go ahead and take a little prednisone. I don't really want to call the doctor back right now, I just wish I'd thought to mention it to him when I had him on the phone...it was just starting to trouble me then.

Here's a link to a good deal on generic Benadryl: