It's Been Awhile...

I haven't added anything here for a long time, and for that I apologize. I guess I've been kind of scared about my treatments and got down in the dumps over it. Things have improved tremendously though, so I think it's about time I posted an update.

I kept having a lot of bad reactions to my treatments and my doctors kept telling me that if I didn't improve, they would have to take me off of all IgG therapy and put me on prophylactic antibiotics. What scared me about that is that I already have significant lung damage from all the infections I've had over the years and prophylactic antibiotics are less effective at treating CVID than IgG therapy. In addition, I tend to develop allergies to antibiotics quickly, and there are already many that I can't take either because they quit working for me, or I suddenly developed an allergy to them. I think we've finally come up with a solution that is working though, and my infusions have been going much better with fewer side effects.

I now take 20 mg of Prednisone the day of my treatment (an hour or so before I start it), and then another 20 mg of Prednisone the day after my treatment. If I take that and make sure to hydrate well, I tend to not have many reactions, and those that I do have are minor. The only exception to that seems to be if I forget to take my second Prednisone, then about 24 hours after the treatment I will start having trouble breathing.

The good news though is that I'm recovering more quickly from my infusions too. It used to be that I would feel exhausted and sick for the whole week between infusions, but now I feel weak the day after my treatment, but by the second day after, I feel pretty good! I've actually started looking forward to my infusions because I know they will help me feel better!

Today I forgot to take my second Prednisone, and so I'm having breathing trouble now. I was trying to figure out what was causing the chest tightness, then suddenly realized I hadn't taken the other pill. I need to make sure I put it in my pill container for the next day.

Infusion #10 Gammagard S/D

I did my 10th SubQ infusion with Gammagard S/D on Friday, and it was probably my best infusion to date! I'd spoken with the pharmacist at Accredo before I did my infusion, and she confirmed that the leaking during the previous infusion was likely caused by the cuts around the needle sites, so I decided to try the 6mm needles once more. I did the entire infusion myself and everything went very smoothly. No anxiety, no vomiting, no problems whatsoever! 

The next day I took only 10mg of Prednisone (as opposed to the 20 that I'd been taking previously) and I thought I was doing well, but then nearly 24 hours after the end of the infusion I suddenly started having severe breathing trouble. I took the additional 10mg and my inhalers. I had intermittent breathing trouble the rest of the weekend, so I don't think I'll experiment with that again any time soon.

The Prednisone does seem to be causing a lot of side effects with me that are very difficult to deal with. The worst of them is depression and anxiety. I'm really having a hard time dealing with my mood swings, and I'm very cranky. I Googled vitamin deficiencies caused by Prednisone, and found out that it causes a vitamin B-12 deficiency, so I'm going to increase my daily dose of B-12. I sincerely hope that it helps me deal with the emotional/mental toll that Prednisone takes on me. If you're interested in seeing what I found out about the effects of Prednisone, here's a link: http://www.copd-international.com/library/corticosteroids.htm

Eighth Gammagard S/D Infusion

I had my infusion today, and overall it went pretty smoothly. I tried new areas and shorter needles today, and 1 site leaked during the infusion. I also vomited again before starting the infusion and I'm starting to think that's due to a combination of migraine with mild nausea, PMS and a reaction to the first needle hurting and maybe a bit of anxiety just to make things fun. Both times that I vomited were about 5 minutes or less after having the first needle was put in and it hurting. I don't know why that would be a factor, I mean, I don't faint or throw up when I get my blood drawn or IVs, so why should this be different? I also don't vomit every time a needle hurts. It doesn't make sense that it's just anxiety, but perhaps a combination of all of the above just makes a bad mix. I've also started hydrating with 50% Gatorade and 50% smart water in case the Gatorade has been contributing to my nausea.

I had to put the needles in a place other than my thighs today because I have a rash all over them from last Friday's infusion. This time I chose the love-handle area and my lower back. I couldn't see to put the needles in so my mom had to do most of them. I took a nap and laid on some of the needles (they didn't hurt since they're the 6mm ones) and the one with the most pressure leaked onto my sheets. I have what looks like a water stain on my sheets and I hope it will wash out. I finally just clamped off that one site for most of the infusion since it wouldn't stop leaking. None of the other sites leaked. Although none of the needles were in my stomach area, my belly still bloated from the infusion. The needle sites aren't painful now, but I'll have to see how they are tomorrow. I hope the rash on my legs goes away soon because I really prefer my thighs....I wonder how the calves would be?

I'm doing pretty well. My pharmacist suggested that I take 20 mg of prednisone when I first eat tomorrow rather than tonight, so that might prevent the back-lash reaction that I seem to get the day after my infusion. I'm going to give that a shot...she also said I could try 10 tomorrow and 10 the next day...we'll see how tomorrow goes.

Update...
Thursday, 12/30/10

I didn't have any bad reactions the next day, and I've come to the conclusion that the pharmacist was right about the Prednisone causing a backlash reaction. The Prednisone affects my mood and makes me irritable, but it's better than migraines, breathing trouble, and rashes. I felt pretty good during the week and was able to have a nice Christmas. I think we are finally on the right track! :D

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.

Appointment with Primary Immunodeficiency Specialist

Today I had my first appointment with a true specialist in immunology at a local research hospital.

He's a pediatric immunologist, but sees adults once a week. I saw a fellow first who was very nice and also seemed very competent, she asked me a lot of questions about my history, especially regarding infections. Then the doctor came in with another fellow and sat down, talked to me in-depth, and very patiently answered my questions.

The doctor is concerned that the original tests that I had at diagnosis were not sensitive enough to detect how low my IgA actually is. My test results show <25, but that just means that my IgA is lower than the test is capable of showing. Because I have a history of bad reactions to both Carimmune NH IVIG, and have had a few bad reactions to Hizentra SubQ, he suspects that I might have an IgA level below 6. He also said that if that's the case, and I keep having Hizentra or other high-IgA gammaglobulin treatments, my body could make IgA antibodies which would mean that I could eventually have very serious reactions like anaphylaxis to the treatments.

He plans to run more in-depth and sensitive tests on me to check out my IgA level, see what antibodies I have for various diseases, test for RA and Lupus, and see what I have in terms of Candida. There was probably more, but I'm having trouble remembering.

I am very excited about being able to see this doctor. I believe he will help me a lot! He recommended that for my next Hizentra treatment I take 2 Benadryl, and 1 Tylenol and see if I do better.

I will keep the Fioricet as an option later if I get a migraine, but because it has Tylenol in it, I would have to wait hours after taking the Tylenol before doing that.

He kept reiterating that CVID is actually a "blanket name" for many different diseases, and they will test me to find out more about what I actually have. I'm so excited! :D

My Questions for the Doctor, and his answers:
(Note, I may have not fully understood his responses, or not written fast enough and can't remember exactly what he said (I took notes as he answered my questions). This is my best summary of what he said to me today. I hope it helps, but check out what I have here with your own doctor)

Questions for PI Specialist

Question: Should I take steroids (or any drug that lowers the immune system) ever? (eg: nasal sprays, inhalers, eczema creams, prednisone, etc)

Answer: Yes, as needed for asthma, allergies, autoimmune disorders, etc.     Avoid over-use of oral steroids due to them affecting the blood

 Question: Should we get treatments while sick?

• What about with an infection or while on antibiotics?

Answer: Yes, unless you have a high fever which might mask a reaction to the medication

Question: Should I stay away from children (some doctors have said that I should)?

Answer: No, but use caution. If they are sick, wear a mask, keep distance, and wash hands frequently

Question: What is your "goal" IgG level for me?

Answer: Based on individual, but around 800 for me. He also said that some people are fine at 600, but he doesn't think that I'm one who would be.

Question: Will you test me for IgA antibodies?

Answer: Possibly, if I have very low IgA (under 6.0)

Question: If I have IgA antibodies is it still safe for me to have Hizentra?

Answer: No because I will make antibodies to the IgA, and will then be more likely to have a very serious reaction to my treatments.

Question: Is it safe for me to receive a blood transfusion?

Answer: It is unless I have very low (under 6.0) IgA, in that case a blood transfusion could be very dangerous

Question: Can/will you do genetic testing? I think there’s a family history...

Answer: In my case, yes because I’ve been sick for so much of my life. A very small percentage of people have the defective TACI gene, and the people with the other associated defective genes are even more rare. He will test me for the TACI defect.

Question: Is it possible to have CVID your whole life, but have your immune system crash at some point where your numbers fall, or will they always be low?

Answer: Yes, but because I’ve been sick for so long that’s probably not the case.

Question: Do you treat the patient or the IgG levels?

Answer: He cares about the patient’s well-being, and some patients are good at lower levels and there are treatments other than IgG replacement that work for them. He does not think that is the case with me.

Question: Are you currently researching CVID?

Answer: Yes, he has a budget for researching CVID and is accepting patients for the research

Question: How will you help me regain my quality of life?

Answer: By finding a more appropriate treatment for me.

Question: Can CVID patients make antibodies?

Answer: Yes, especially for things like Lupus and RA

Question: Can CVID patients  test positive to things like Lupus, RA, etc?

Answer: Yes (see above)

Question: Should CVID Patients wear a Medic Alert Bracelet?

Answer: Yes, especially if they have very low IgA, then they should specify CVID – No IgA (or something like that)

Question: Should I have antibiotics for dental appointments? (Fillings, etc)

Answer: No, the primary reason for that is to avoid heart valve infections.

Question: Can we eat honey safely? I read that it’s an issue w/ babies because of them not having enough good bacteria in their intestinal tract, but ours can be wiped out by antibiotics and other drugs...

Answer: Yes

Question: Should we get vaccinations?
Answer: There's not much point because of the vaccinations being covered by IVIG/SubQ--except the most recent flu vaccination. You especially need it if you're on Hizentra.

Question: Is a problem with the innate immune system (limited/no swelling, low body temp, diminished pain response) related to CVID?
Answer: Yes, the innate immune system is (can be? don't remember which he said) linked to CVID, but they don't know how yet. I also don't remember whether he said for all CVID patients, or just some. I do remember him saying that they see things like low body temp, and not swelling in some CVID patients. He also said that some patients don't heal at the normal rate.

**********************************************************************************

If any doctors who saw me today disagree with the information I provided here, please either send me an e-mail or write a comment below. I will correct the information right away. Thank you! :)

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.

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. 

Sixth IVIG Treatment

IVIG #6

Today I had my 6th treatment, and it went so much better than the previous 5! I'd gone into the infusion center on Monday and spoke to the charge nurse about how the last treatment caused me so many problems, and I didn't think that she would be very helpful as her response was "we can only slow it down if your doctor orders us to". When I walked in today I was dismayed to see that she was my assigned nurse, but she said "don't worry, I know what's going on, we'll take it nice and slow today". She started me at 25 cc/hr, and then increased to 50, then 75, and 100 at 15-minute(?) intervals. She told all of the other nurses to not take me up higher than 100! I don't know how it worked, but I was out of there at 2:30 after going through my usual 24g of IVIG, which is the same time that I get done when they take me to 175. I was much less dopey than normal too, despite having all of the normal premeds. I don't know whether the caffeine that I had early on caused that or whether it was simply that the infusion wasn't as overwhelming as usual. I feel almost normal right now, and I'm excited with hope that it might get easier for me to handle this and go back to work full-time! Here's a little tid-bit that the nurse told me about IVIG. She said that every brand has differences that impact the speed at which it can be safely administered. Some brands are highly concentrated, and therefore have to be administered at a much slower rate; whereas my brand is highly diluted and is generally well-tolerated at higher speeds. I guess when we compare speeds, we should also take concentration into account. I'm not sure where to find that information out but the one that they give me is called Carimune NF, and is the only brand currently available at my infusion center.


Update
Monday, June 7, 2010
I've been on Prednisone for about 6 days now...maybe a little longer, and am having some problems with side-effects. My doctor only gave me 20mg/day for 4 days, 15mg/2 days, 10mg/2 days, and 5 mg for 1 day. I'm about to transition to 10mg starting tomorrow. I feel like I've had too much coffee, feel very shaky, and have been having a lot of trouble sleeping at night. I'm trying to make a point to take extra calcium while I'm on it. The rash is clearing up finally, at least. I saw the dermatologist, and she agreed that it is eczema, but that it was triggered by my infusion a month ago (5/7). I'm having a 4-week break between infusions this time, so hopefully the rash will be gone by the time I have my next one on 6/25. In the meantime I've been avoiding any foods that I'm suspecting that I'm sensitive to, which is making grocery shopping and meal planning pretty awkward for my mom.

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: