7th Gammagard Infusion...An Odd...One

So I had my 7th infusion today and something very odd happened. After the needles had been in for about an hour I noticed blood under the adhesive. It wasn't a lot, but enough to soak all the way out and stain my clothes after about 10 minutes. I called my nurse to find out what to do as I'd never encountered that before. I did check the sites before starting the infusion so I knew that it wasn't in a vein.

My nurse told me to clamp off the tube and apply pressure to the site (which freaked me out a bit since that seems that it would mean pushing the needle in even further). I applied pressure directly next to the needle and after about another 20 minutes or so I could tell that the blood was starting to coagulate and look darker, I'm not sure when the bleeding actually stopped though. After about 30 minutes I unclamped the tube again and let it run.

During the infusion I had more shortness of breath and tight-chested feeling than I did the previous time. I took my inhaler a lot, and ended up getting the jitters. This time I'd taken 20mg of Prednisone and 2 extra strength Tylenol ahead of time, but forgot to take the 50mg of Benadryl until the infusion had been going for at least 30 minutes. I forgot to take my inhaler for about an hour.

This infusion only took 6.5 hours because I made a point of paying attention to the syringe-change time. I wish I'd noted the correct time in my log so I'd know exactly how long it took, but I was very tired today (I've had trouble sleeping since Monday night), and I just absentmindedly jotted down 4:00 PM, but it may have been as late as 4:15.

I took another 2 Tylenol about 3.5 hours into the infusion, as I felt a headache trying to start. I took another 2 Benadryl at about 11:30 (after the infusion), and I'd taken the 2nd prednisone around 9:00. The prednisone is kind of touchy, as I need to take it with food, but I'm supposed to take it 1 hour before and one hour after. Instead I take it with lunch (or whatever meal I have as I'm getting things set up), then if dinner seems too close to the start time, I have a good-sized snack later. Tonight I had 2 snacks: a bowl of uncooked oatmeal with chocolate milk (yummy...you should try it), and some leftover spaghetti about 3 hours later. It's abnormal for me to get that hungry that soon after eating something substantial, so I think the prednisone is increasing my appetite. 

The infusion ended at about 10:30 PM, and it's now nearly 3:30 AM. I'm tired and I hope that I'll be able to sleep through the night. That's doubtful though since I drank over 100 Oz of fluids today and will probably wake up for the bathroom a lot.

First Solo Infusion of Gammagard S/D!

The people at Accredo were great and sent me tubing to help slow down my infusion rate, so I expected things to be much better.

I made some rookie mistakes this time:

• Took my premeds 20 minutes after adding the saline to the powder. By the time I was ready to put the needles in I was pretty dopey from the Benadryl. It took 2 hours for the powder to dissolve completely, and another hour for me to get the needles in. Next time I need to take my premeds when I'm ready to start hooking up the needles.
• My nurses had suggested that I clamp off all needles but 1 to prime them, so I tried that this time. I primed 1 needle and put it in. Then I primed the next one, forgetting to clamp off the needle that was in me before pushing on the syringe. It hurt quite a bit to get the medication in at that rate, so I learned my lesson quickly. Probably wouldn't have done that if I hadn't been loopy from 50mg of Benadryl.

Throughout the infusion I had pinching and swelling at the infusion sites that I hadn't clamped off during priming, and had to turn the pump off twice for 15-minute breaks to allow the medication to absorb. It took me 3 hours from the time I started mixing the Gammagard S/D until I started the infusion, then the infusion itself took 5 hours due to using 60ml/hr tubing and taking breaks.

Because I'd taken 2 Benadryl 2.5 hours before starting the infusion, I took another 2 Benadryl 4 hours later and really struggled to stay awake long enough to swap out my syringes in the pump. After another couple of hours I had a slight fever (99 degrees, but my normal temp is 97-ish), headache, and was starting to feel achy in my lower back, so I took 2 more Tylenol.

After the infusion was over I felt a migraine trying to start at the base of my skull. I didn't want to take any more Tylenol, but I took 2 Aleve (not supposed to because of my stomach) and a Clonazepam to help relax my muscles.

Next Day...
This morning I woke up with a migraine threatening (not too bad though, I was still able to work). I took 2 Tylenol without it helping much, and took to Ibuprofen after a few hours when I wasn't getting much relief. I finally called my chiropractor and he was able to help a lot by massaging at the base of my skull and my shoulders and neck. I've been tired all day and worked on my laptop in bed because I didn't really feel energetic enough to sit at my desk all day. Nevertheless, I think this is the best drug for me of any that I've tried so far. My reactions to Carimmune and Hizentra were pretty bad, with the Hizentra being worlds better than the Carimmune. I really believe that my non-existent IgA is a huge factor in how they affected me.

Hizentra Reactions

I did my 4th Hizentra treatment on Friday, and I think it will be my last one. Despite taking 2 Benadryl in advance, I started itching all over my body and having breathing problems within about 20 minutes of starting my infusion. 

The bright note of my infusion was that I did it in the outside of my leg...on my thigh, about half-way between my hip and knee. the swelling was minimal, and went out about 2". Today (Sunday) it's itchy and sore, but better than on my stomach. My stomach tends to bloat and get really painful afterwards, but I haven't experienced that with my legs.

The specialist from Stanford called to say that my IgA is below 6--which is virtually 0, and when I'd had my appointment there he said that if my IgA is that low I could be building antibodies to IgA. Anyway, they believe that my low IgA is what's causing my reactions to Hizentra and Carimmune. I think I will stop taking the Hizentra until they can get my insurance to approve the switch to Gammaguard SD.

Two Days After Third Hizentra Treatment

For the Third treatment I took 2 Benadryl as recommended by the specialist, and also took 1 Tylenol. By the next morning all of the swelling in my belly was gone and I only had 1 tiny knot. I was so excited because that was so much better than the previous 2 treatments! I felt like I had some energy and got up, showered, and went about my day. By about 4:00 PM I felt really tired, and my belly had swollen up again and was starting to hurt. I put ice on it, and it really didn't seem to help other than soothing the itching. Knots started forming at the injection sites, and increased in size and pain until they were about 1.5" in diameter. Only 1 site did not develop knots, and I have no idea why that is. I wonder whether the ice contributed to the knots forming, or if my jeans irritated my stomach and caused them? I have no idea...

I realized that I probably should have taken more Benadryl the night of my infusion, that might have prevented the swelling and itching the next afternoon.

Second Hizentra Treatment! :)

I woke up infusion day with my stomach still feeling unstable, allover body weakness, and sore muscles from vomiting. I showered, got dressed, and was just reading my support group page when my nurse arrived. This time I knew what I needed for the treatment and set everything out, only checking with her once I thought I had everything ready. She showed me an alternate way to get the medication into the syringe that I like better than the way she showed me the first time because it puts fewer bubbles into the medication and is still easy enough for me to do it.

I really appreciate that Accredo overnighted the extra supplies that I would need to have a more successful treatment to me. The package included larger needles, quadfurcated tubing for 4 needle sites, and smaller rate tubing so that my infusion would go more slowly--allowing the medication to be absorbed while it's being administered. My nurse requested the larger needles so that it would be easier for me to get my medication into the syringe, and I'm so glad she did!

For this treatment I took a Zofran for nausea as well as Benadryl, and after awhile I decided to take a clonazepam as well because my nurse had said that it helps relax the muscles, and after the last treatment my neck and back muscles were so stiff and sore that I think it contributed to--or maybe even caused--my migraine.

Because of the slower rate tubing it took about 3.5 hours for my infusion this time, but it was so worthwhile! I have very small welts at some sites, and none at all at others!

I woke up this morning (first day after) with no migraine, but weakness and tiredness, however; those could be due to the vomiting from the day before my infusion. Overall it's been a good day and I'm feeling highly encouraged! :D

Fourth Day After Hizentra

I woke up this morning and my headache had returned with a vengeance. It was nearly as bad as when I woke up Saturday morning, but not quite as intense. I really regret not hydrating...I think I learned my lesson!

I called Accredo's 24-hr helpline, and they put me through to the pharmacist at my local branch. The pharmacist suggested that I talk to my doctor and:

1. Take Tylenol in addition to the Benadryl
2. Use the skin protection patches to see if that helps
3. Call my doctor to find out whether she can give me a Rx for prednisone that I can just take during the infusion. She said I need to tell the Dr about my reaction including the flu-like symptoms.
4. I already take Rx allergy meds, which was her other suggestion.

Immediately after hanging up with the pharmacist the phone rang again, this time it was my nurse. I thought she was calling because of my call to the pharmacist, since they're out of the same office, but it was just a coincidence. She was calling to make arrangements to see me on Friday for my next infusion. We talked about my side-effects and she mentioned that shorter needles might help me. I guess if the needles go into the muscle, they can cause more of a reaction and trigger some of the inflammation that I experienced. She said she will talk to the team about what I experienced, and see what they can do to help me.

Later...
My nurse called me to say that she talked with the team at Accredo, and they decided that it would be best to slow my infusion down even more. I'm absolutely in favor of that since infusion speed was a huge factor in how I felt after my IV infusions. She also reiterated that as my body adapts to the treatments I should experience fewer side effects. She said that they're concerned that if they use shorter needles there's a potential that they might miss the fat layer and pump between layers of my skin--which would be a problem, so they're going to stick with the current needle size. I haven't yet received the new tubing, but I hope that I will get everything tomorrow or Thursday at the latest.

I also saw the chiropractor today to get help fighting the headache. He found a lot of really tight muscles in my back, neck and head that were contributing to the intensity of the headache. He worked them over and told me to rest. He also said the heat on my neck and shoulders was better than ice, and would help with the headache.

Third Day after Hizentra

I felt pretty bad when I woke up this morning, the headache is nearly gone, but it's more like...like I'm really getting sick. I didn't want to wake up, and didn't want to get out of bed either. I got up, showered and worked, but felt like I was really pushing myself to get through the day. I have chest congestion, a sick taste in my mouth, weakness, sinus pain and pressure, slightly sore throat, I keep feeling short of breath, and feel like I might be getting a cough. A friend from my support group said it might be a reaction from the Hizentra, as she had a similar experience after her first treatment, but I guess time will tell. I took a Benadryl just in case it might help.

I took my temperature. I usually don't bother since even when I'm really sick with pneumonia I tend to not get fevers--in fact, I'm usually at least a whole degree below normal, and so if I'm around normal I think of it as a slight fever. Tonight my temperature is 98.3.

My mom reminded me last night that my nurse had told me to use ice or heat for my injection sites when they hurt. I'd forgotten that, and was just using heat, but it seemed counterintuitive to use heat for swelling, so I tried ice. That was soothing. They have hardly bothered me at all today.

Eighth IVIG Treatment

IVIG #8

Saturday, July 17, 2010
Today when I walked into the infusion center at 9:30, Jane (my nurse from infusion 7) introduced me to Christina, who would be my nurse today. She assured me that she'd told Christina to keep the speed at 50 cc/hr or slower. I was happy to hear that because I'd prepared myself to argue to keep it below 75. Christina was sweet, and when she started the IV it hurt less than usual. No blown veins, and no other problems. :)

I started out watching a movie, but I got too sleepy as the benadryl kicked in and took a nap. Mom woke me up at 1:00 because she got worried that it was going so slowly that the nurses were going to give me attitude near closing time, so she asked the nurse about increasing the speed to 75 to make sure that I was done in time. That was when I learned the conversion to calculate the amount of time it takes to do an infusion.

Anyway, the nurse raised the rate to 75, and we finished at 4:55. My next infusion will be August 6th at 8:00 AM. That way if I need to keep it at 50 all day, I can! :)

The 75 rate seemed to work for me. I wasn't dopey after my nap. I finished my movie and spent some time on the computer.

After my infusion I had my mom take me to visit my brother, and we hung out with him, his girlfriend, and a few of their friends for about 3 hours. I had a really great time, and still felt good when we left. I did however, need to leave because they were smoking a lot, and it was really starting to aggravate my lungs. We then came home. My one big concession to resting today has been working on my laptop in bed rather than sitting at my desk. Anyway, it's been a great day overall, and I think I'm ready to sleep. :)

Update

Monday, July 19, 2010 

I had my infusion on Friday, and yesterday (Sunday) I went out with my boyfriend and his son to a park for a play date with other children. Being at the park was fine, except I was a little paranoid about playground germs. I tended to pace a lot because everything seemed sticky and dirty and I didn't want to touch anything. As a result, I probably expended more energy walking around there than I should have and thoroughly exhausted myself. I'd thought that it would be no big deal to go on such a simple outing since I'd had a day to rest, and the infusion had gone smoothly, but I really over-estimated my abilities. Due to the circumstances I was stuck with walking around and sitting when I had to until my boyfriend was able to take me home a few hours later. By that point I was so exhausted that I just wanted to curl up in a ball and cry myself to sleep. I just wanted to do something normal with people that I care about, and that was too much. I know I wasn't fun to be around either.

Another infection and my doctor visit today
Friday, July 30, 2010

I have been so exhausted lately, both emotionally and physically, and for at least the last 3 weeks. I went to my doctor today because I have a sore in my mouth that I knew last night was infected (I still have my wisdom teeth and I'd bitten the inside of my cheek with it), and my sinuses have been stinging for days along with headaches. Anyway, I have the beginnings of a bladder infection, sinus infection, and possibly the beginning of pleurisy. Because I rinsed my mouth with hydrogen peroxide last night and this morning, she said that the sore is not infected, so I'm just going to keep using the hydrogen peroxide on that. She gave me a prescription of Levaquin for the sinus/bladder infection, and I hope it will take care of pleurisy too if that's really what's happening.

We talked about whether it would be wise to have my wisdom teeth removed (no pun intended) because I bite myself a lot, and she said that it's really up to me, but I should have it done while I'm on antibiotics if I want them removed. I'd do it during this round of antibiotics, but I also need to do it soon after an IVIG treatment. I might put it off another 6-mos or year, I mean, I've been putting up with this since I was 17 or so, what's another year?

We also discussed a referral to see Dr. David B. Lewis at Stanford, and it turns out that she knows him! She said she was happy to refer me to him and that I should have someone really knowledgeable treat me, and she even told me that if I want to transfer my care to him that I shouldn't worry about hurting her feelings. I thought that was really sweet, because I was worried about that even for asking for a referral. However, I think that seeing him as my regular CVID doctor would probably be cost-prohibitive especially because he's out of network. I expect that I will keep him as an annual visit kind of doctor or every 6 months. Still, it will be awesome to see someone who's focus of study is primary immune diseases! :)

Aftereffects of Fifth IVIG Treatment...and Worst Ever!

Space Cadet

All of this week I have not been functioning! I am very spacey, making lots of typos when I write, forgetting how to spell words that I KNOW, and unable to do basic math. On top of that, I've been misreading a lot of words and also unable to focus on much of anything. On Tuesday I completely missed a dentist appointment and didn't remember it until 10:00 PM, and I also forgot all of my medication that day up until 7:00 PM. That includes seizure meds and asthma meds, and I've kind of been wondering whether I've been having some absence seizures or something and if that's why I'm so out of it. One thing I do know is that I've had hives nearly every night since my infusion and have had to take benadryl every night so I don't spend the whole night scratching. I'm sure that's at least part of the spacey problem. I saw my therapist today and mentioned that I didn't think it was due to depression, although I tend to get into a similar state when I'm very depressed, but she agreed that I don't seem depressed at all.  

I definitely want to have them slow down my infusion rate because if this is all post-treatment stuff...which I think it is in one way or another...then that's ridiculous! One person told me that she starts at 50 and increases it by 10 every 15 minutes to 150. Considering I usually have mine at 175, that sounds like a good place for me to start. I hope that it won't be a big fight with nurses to get them to slow down, but I think my doctor will back me up on it.

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: