Ninth Gammagard S/D Infusion

I had my infusion yesterday at my boyfriend's house. I wanted to do it early so that I would be able to have a glass of champagne on New Year's Eve. I found out the rough way that if I have alcohol within a day of my infusion that it will make me feel truly awful due to the dehydration that it causes.

I noticed that I was feeling a bit dizzy and anxious when we were getting ready to do the infusion, so I asked him if he felt comfortable doing the infusion if I were a bit dopey on Benadryl. I had been feeling sick and tired for the previous 2 days, and, as usual, there are too many variables to really know what was going on. I may be fighting off an illness. I noticed that I never had the anxiety issues with the Benadryl in my system and that it would calm me. I only took one so that I would still be able to coach him as needed. He was wonderful, and did all of the needles for me. Some of the needles hurt due to the Gammagard having gotten into them, but it didn't phase me. I took the 2nd Benadryl after the infusion had started and took all the regular premeds at the appropriate times. I had to take my rescue inhaler periodically during the infusion, and more Tylenol (as I had a headache that wouldn't go away, but didn't take more Benadryl. The infusion took about 7.5 hours with me closely monitoring the pump to change the syringes.

Benadryl (AKA Diphenhydramine)

Tylenol

This was the first time I used the 6mm needles in my thighs, and at first I was excited because it seemed to be so much more comfortable than the 9mm needles. I stayed awake throughout the infusion and didn't put any serious pressure on any of the needles, but about halfway through my infusion one of the sites started stinging severely. I asked my boyfriend to look at it and he noticed that the Tegaderm was lifting around the needle, and when I got to where I could sit down and look at it in good light I saw that the site was actually leaking. I tried putting a pressure bandage over the needle to stop the leaking, and it seemed to work at first, but then it started up again. I had to clamp that needle off and finish the infusion in 4 sites.

Today the sites still look white and swollen (which is unusual for my thighs), and I've come to the conclusion that I need to go back to the 9mm needles. I think that the extra stinging is due to the fact that the Gammagard wasn't getting into the fat layer but was going in between layers of my skin. With the 9mm needles I would have leaking after an infusion, but never had leaking during an infusion. I'm glad that Accredo let me try the 6mm needles without taking the 9mm needles off of my order.

I took my second Prednisone this morning and have had some irritability and gloomy thoughts today, but I seem to be breathing well and feeling relatively well. I still don't know whether I'm getting sick or not. I sincerely hope not.

Bad Reaction...but to what?

I did my infusion yesterday and finished about 11:00 PM. Today I felt ok other than exhaustion and a headache...until about 2 hours ago (8:00) PM. Suddenly I started swelling all over my body and having breathing trouble. I'm afraid it's from the treatment, but hoping it was just a food reaction rather than to the treatment. I took 2 Benadryl and my breathing has improved somewhat, but I'm still swollen enough that my fingers feel stiff, and still a bit short of breath. I know I probably should do the epi-pen and 911 thing, but I'm afraid that the epi-pen will trigger seizures. I keep monitoring my breathing with my peak flow meter and even with the feeling of shortness of breath, I'm blowing over 400 on it (which is good). My tongue isn't swollen either.

I didn't eat anything that unusual today, except some home-made oatmeal/coconut/chocolate cookies that my mom put some milk in. I'm allergic to milk, but have never had this kind of reaction to it before. That was the most recent thing that I ate before the reaction, and the reaction came on very suddenly. I also had some spaghetti with fresh basil on it from my mom's plant, and while that's not something I have all the time, it's still frequent enough that I didn't think twice about it. I had that about an hour before I noticed the reaction.

The only other time I've had a reaction like this to something was to shellfish, and it was similar except this time I don't feel like my tongue's swollen. I'm wondering whether there's shellfish in the cat food.

Will post more later...

False Alarm?

Sunday, 11/19/10 2:00 PM

So...I ended up not going to the hospital, but took an additional 2 Benadryl and was finally able to sleep despite the fact that I was really scared. I feel a lot better this morning, and I realized that the Prednisone could have made me puffy instead of it having been an anaphylactic-type reaction. I know, I'm an idiot for not going to the hospital because they could have at least confirmed whether it was anaphylaxis or not, but I was afraid to go because I was scared I'd catch something. Silly huh?

I took my blood pressure when I was going through all of that and it was 140/89 which is very high for me, but it made me more comfortable to sleep because one of the danger signs of anaphylaxis is low blood pressure in addition to the other signs. It made me realize that maybe something else was going on and I calmed down. This morning I asked my mom whether I'd been puffy earlier in the day before I went to get her and she said my face was definitely puffy. That's another reason I think it was the prednisone. Also, I never felt like my throat or my tongue were swollen, and I think the prednisone explains that. 

I feel like a fool for getting so scared and putting my mom through hours of worry, but it was scary and I've had the swelling thing before with my tongue and throat swollen from an allergic reaction. I should have remembered that prednisone makes my face look puffy too though and calmed down when I realized my tongue and throat weren't swollen.

I do have a rash where the Tagaderm patches were, and that's something new. I took picture to show the doctors if they want to see them. 

So confusing...too many variables...

Update...

Monday, 12/20/2010 10:00 AM

I tried to call my doctor but they are out of the office until January...I guess that's the drawback of a teaching hospital. When I couldn't reach anyone there I called Accredo and spoke to both the head nurse and the pharmacist. They were both of the opinion that it probably was the prednisone causing the swelling because I didn't have a swollen throat or tongue. The pharmacist suggested that I take 20 mg the day of my infusion and then try either taking 10 mg the next day and 10 the day after that, or 20 the day of and 20 the next day. She said she's noticed a pattern to me having breathing trouble about 24 hours after the infusion and believes it to be a backlash reaction from the prednisone suppressing everything. She said missing a few weeks of my infusion wouldn't kill me if I'd rather wait to talk to my doctor. I truly think that's what it was though. 

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.

Appointment with Immunologist

Last week I saw Dr. Lewis at Stanford again and he gave me the results of all the tests that they ran last time. IMy IgA was undetectable, IgM was up, and IgG is now over 1500! They said they don't want it to go higher. I responded well to Diptheria, Tetanus, Pertussis, and had normal results for Tuberculosis.

Dr Nelson, the Fellow who works with me most, said that they might run the IgA antibody test on me, at least, I think that's what she said. At first I thought she meant they'd run a test on me to see if I'm allergic to IgG, which she said I could be since I'm having so many reactions to my treatments, so I'm really not certain what test they mean to run.

Dr Lewis recommended various specialists for me who at least know him, and hopefully are familiar with CVID too.

We discussed ways to deal with my treatments, and for now we're going to continue as is with taking my asthma medicine regularly, taking my rescue inhaler 20 minutes before treatment and again 4 hours later, taking 2 prednisone, 2 Tylenol, and 2 Benadryl. I get exhausted just writing about it. ;) He also recommended that I start pushing hydration, even harder than I normally would for an infusion, starting the day before and continuing for 2 days afterward.

If those suggestions don't work, then they will add in using my nebulizer before/during treatment, and that would mean I'd also have to take Clonazepam to stave off seizures. What fun! I'm hoping and praying that it won't come to that. If that doesn't work, then they'll move on to about 20ml treatments / day probably for 5 days of the week. If I still have problems with that, then they will take me off of Ig therapy and put me on prophylactic antibiotics.

So, now that I know all the possibilities, I'm more coming to terms with my fears over the worst case scenario. Dr Lewis thinks that I should adapt to the current treatment and that the realistic worst it will be for me is to add in the nebulizer. That's much more acceptable to me than trying to wing it with antibiotics.

Here are some of the questions I asked while I was there:

Question: Can I eat sushi safely?

Answer: Yes, although eating exclusively saltwater sushi is safest, and salmon is the most dangerous.

Question: What wording should I use on my medic-alert bracelet?

Answer: IgA deficient with CVID

Question: What is IgM?

Answer: IgM is the body's first line of defense against infection, but IgG covers for it.

Question: IgA is for protecting our eyes, mouths, and mucus membranes from bacteria/viruses, do I need to be extra cautious of infection in those places due to not having IgA?

Answer: IgG will protect those places also

Dr Lewis told me that many of his CVID patients get daily migraines, and also migraines that precipitate IVIG. He recommended a drug called Diamox, but when I mentioned it to my neurologist the neurologist said that Diamox is for brain swelling, and gave me Verapamil instead. Apparently Verapamil is good for neurologic migraines.

Thanksgiving and my Fourth Gammagard Infusion

On Thanksgiving Day I had 2 asthma attacks and a migraine. I was doing ok, but the candles at dinner, smoke on people's clothing and perfume all served to aggravate my breathing and I ended up having a very embarrassing (all public attacks embarrass me) asthma attack in front of my boyfriend's family. They were great about it, and helped me get some tea and water (tea helps loosen my chest), and were very considerate and kind about everything. I just hate being the center of attention like that, especially when I don't know people that well. I took 2 Benadryl, had extra caffeine in the hot tea, and took my inhaler probably about 3-4 times.

Then we went to my home for dinner #2 with my mom. I was doing better and pretty much held my breath from the car to the house because of all the chimney smoke in the air (I was wearing a mask too). I sat up in bed to recuperate from the attack until dinner was ready. I felt hungry but exhausted and nauseous. When dinner was ready I was so nauseous I could hardly eat despite feeling hungry, and I had a migraine on top of it. I took some Tylenol for the migraine. On the way back to my boyfriend's house, when he put the car's heater on defrost the smoke sucked into the car, which triggered attack #2. Luckily it wasn't as bad as the first one.

The Infusion

Friday morning I woke up with the headache, but it wasn't as bad as the night before. I got ready to start my infusion and had just put the first needle in when I started vomiting violently and came very close to fainting. I was so sick that I thought I'd have to go to the hospital. My vision became completely obscured by what looked like snowflakes, and I wasn't able to focus for probably close to 5 minutes. My boyfriend got me a Zofran, and totally took care of me; about 10 minutes after that I felt better. I don't know why I threw up, but I do know it wasn't related to my infusion. I had to teach my boyfriend how to do my infusion because I was not functioning very well; he put most of the needles in for me. I had taken a prednisone about 40 minutes to an hour before I vomited, and I was hoping that I'd have enough in my system to keep me from reacting to the infusion. I also took my inhaler, along with the 2 Benadryl and 2 Tylenol as premeds. Once again I put the 60 ml/hr tubing in series with the 120 ml/hr, and the infusion lasted for a total of 6 hours. I had some swelling and pinching at the injection sites, but never enough that I had to turn the pump off. I didn't have any breathing problems either! I took my inhaler again 4 hours into the infusion, and I had a very slight tightness in my chest at the very end and took my inhaler once more. Overall, I felt that the infusion was very successful! :)

The Next Day

Today I woke up feeling very weak and shaky. I had trouble sleeping last night after the 2nd prednisone and ended up taking 2 Benadryl again to help me sleep and prevent reactions during the night. I eventually fell asleep about 4:00 AM and slept fitfully til noon. My chest hurts a lot. It hurts to breathe deeply or laugh or cough, but I'm hoping that's just from the vomiting yesterday, and not my lungs. I'm eating very cautiously and very small meals because I want to avoid a recurrence of yesterday. I'm still in bed because I feel so weak, but I don't have a migraine, and the shortness of breath I've had seems more related to the chest pain rather than asthma.

Visit to my Neurologist

The week  following  the infusion I was able to see my neurologist about the temporary blindness that happened after I vomited. He believes that the blindness was caused by a migraine and put me on a blood pressure medication called Verapamil to help relieve the pressure in my head. He said that there's a migraine specialist who he knows at UCSF who treats neurological migraines (ones with strange things like blindness, numbness, the room spinning, etc) with the short-acting form of it, so I have to take it 3 times a day. The medication seems to be helping because I've been having fewer headaches. 

Third Gammagard S/D Infusion

My doctor called yesterday afternoon, and told me she was calling in a prescription of Prednisone for me to take to help ward off headaches and breathing problems with my infusions. I'm to take 20mg 1 hour before my infusion and 20 mg more 1 hour after my infusion. 

I started mixing the Gammagard at around 5:00, and it took an hour and a half to mix this time because I paid more attention to it than I did last time. I rolled it gently between my hands. turned it over & over, and did that at more frequent intervals than the previous infusion. I took the first Prednisone when it was mixed. and took the 2 Benadryl at about the same time.

I've been having a problem with my infusion going too fast, and the pharmacy ships slower tubes to me, so I have a wide range of rate tubing (the only way to control the speed with my pump is by the size of the tubes...smaller tubes=slower infusion). Last week I used the 60ml/hr size tubing, and while it was better, it was still too fast, so today I got an inspiration for my infusion--I put 2 rate tubes in series to make the infusion even slower than last week! For those of you not familiar with the "in series" thing, it simply means that I attached 1 tube to the pump as usual, and then at the other end (where the needles would normally go) I used another rate tube, then attached my needles to the other end of that. The longer tubing makes the infusion slower than it would otherwise have been, so the whole infusion took about 6 hours.

This time when I primed the tubing, I clamped all but 1 needle off, and primed them all before putting any in my skin. Unfortunately, thanks to being dopey from the 2 Benadryl, I made a totally stupid mistake last night and forgot to unclamp 2 of my tubes before starting the infusion. I didn't realize the mistake until it was over, so I got the entire infusion in 3 sites instead of 5! I kept wondering why 1 leg hurt while the other one didn't. Thank God I'd slowed it down with the extra rate tubing, otherwise it would have been intolerable! 

I also had breathing trouble during the infusion despite the Benadryl &; Prednisone. It's so strange, I hope that goes away. The doctor told me that systemic side effects are rare with SubQ, but for some reason my body doesn't agree with that. The Prednisone did help with the headaches. I woke up with a slight one, and haven't felt too bad all day. I had a severe ice-pick type headache that lasted for a few minutes (normally they're just seconds), but it faded and I was ok. I took 2 Tylenol this morning for the headache though.

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.

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

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.

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.

Hizentra Day!!

I woke up this morning and remembered that Accredo had sent me a box of latex gloves, so I called the number that they gave me (where I'd talked to the nurse coordinator), and asked them if the nurse could bring a box of latex-free gloves. The nurse coordinator actually answered the phone directly and told me that my nurse was reading my chart last night and noticed that I'm allergic to latex and decided to bring me some non-latex gloves of her own accord. I thought that was so cool! :)

I also asked about pre-meds since no one had mentioned them and I wasn't sure whether I should take anything before the nurse arrives. They told me that the nurse would have me take a Benadryl 30 minutes before we start the actual treatment, and that she would tell me when to do it. For my IVIG I currently get 50mg of Hydrocortisone, 25mg IV Benadryl, and 0.5mg Clonazepam, so it will be interesting to see how this goes with only Benadryl. They told me to go ahead and take Ibuprofen or some other painkiller, but I'm not supposed to take them due to stomach issues and drug interactions, so I'm just going to see how it goes without. I have had a headache all morning though, so I might give in and take something.

The nurse coordinator has called twice to tell me that my nurse will be later than expected. I don't mind, since she's helping someone else, and I know I don't want to be rushed through my treatment so I can't get upset about her not rushing someone else's. I also planned in advance to take the whole day off of work, so I don't have any pressures.

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! :)

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

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: