My November '11 Appointment with the Immunologist

I saw my Immunologist yesterday, and I was able to put my mind at ease over some of my concerns regarding stopping my infusions. I have been worried that I had no antibodies to the kinds of diseases that children get immunized for, and my immunologist showed me my most recent test results (2 months after stopping infusions),  and said that I have antibodies to those diseases. The part that I'm lacking is in defense against pneumonia-causing organisms like mycoplasma and other nasty things like that. He said that it's actually pretty common for CVID patients to have antibodies to most other diseases and just be lacking in defense against pneumonia. That really puts my mind at ease.

The one thing I forgot to ask him about is my hair falling out. I am a woman with long straight hair, and I wash it, condition it, and comb it. Lately it's been falling out by handfuls. I'm getting concerned and don't know whether it's CVID related. However, there are quite a few people in my support group who have the same issue.

I have now been off of my infusions for 6 months and off of Trileptal for 4 months, so yesterday they did some bloodwork to determine whether my antibodies are recovering now that I'm off of the Trileptal. I should know the answer in a few weeks! It would be so amazing and wonderful if I could recover and not have CVID. Of course, I may still be IgA deficient after this, but that would still be better than full-blown CVID!

On the downside, I'm on my 3rd round of antibiotics (in addition to the prophylactic ones) to kick what I believe is pneumonia. Originally I was sick for 4 or 5 days and seemed to recover on my own. I thought it was a good sign. Then about a week later I realized that I had not only a sinus infection but that it was moving into my lungs. I called for antibiotics, and they told me to take triple my normal dosage for 4-5 days then call to let them know how I was doing. I called on the specified day, and since I seemed to be feeling better and hadn't heard from them, I dropped back down to my maintenance dose the next day. That night I went to bed early and woke up about 9:00 PM with significant chest congestion. I made myself some hot lemonade to help loosen my chest up, and went back to bed. When I woke up the next morning I was so sick and so weak that I had difficulty walking just the few feet to my bathroom. I called the Dr back and they said to take double my normal prescription twice daily for 3 weeks (that was a week ago). I've done that, and have felt my strength returning, but I'm still so weak that I need a wheelchair rather than walking any distance. When I saw my Dr yesterday he believed that I could well have had pneumonia, said I was very pale, and put me on a 3-week course of Cipro. He said it's good at fighting all the nasty little beasties that cause pneumonia.

I started the Cipro today, so hopefully I'll feel much better in a few days/weeks.

The Scary thing about Epilepsy Drugs

As I may have mentioned in the past, I have epilepsy in addition to CVID, and was diagnosed with it just a few years before my January 2010 CVID diagnosis. In 2009 I was put on a drug that seemed like a miracle to me (Trileptal...aka Oxcarbazapine), as it controlled my seizures with minimal side effects.

Fast-forward to May 2011, when I found a case study written by Dr. Charlotte Cunningham-Rundles (the leading CVID researcher in the country) linking Trileptal to the cause of CVID in a patient! I was shocked, confused, excited, and even a little bit heart-sick. I spent many days weighing which disease was easier to live with as I knew that my many sensitivities had ruled out most of the seizure drugs that would work on my kind of epilepsy. The thing that made me decide that epilepsy would be the better disease to have to live with was seeing what some of my CVID support group friends suffer with every day, and knowing that I'm not at that point yet but it could be in my future.

The patient in the case study was taking Trileptal to control pain, and once she was taken off of it her body started rebuilding antibodies within 2 months of stopping it, and had fully recovered except for IgA after 8 months. I then realized that the only way to find out whether Trileptal had caused the CVID would be to stop the taking it, but in order to find out whether my body was building its own antibodies would be to stop my IVIG treatments as well. That seemed like a completely impossible option, as I had just started a new job and didn't see any way I could change seizure drugs without going on extended medical leave while my body and brain adapted to new medications. I tried going onto Topamax with the intent of easing off of Trileptal, but my body didn't like that one at all. After a full week of constant intense nausea and not decreasing the Trileptal dose, my neurologist told me to stop the Topamax, and then he began research to find something else that I could take.

Time passed. In August I went to an allergist at Stanford to help me with my allergic reactions that I experience despite testing negative to allergens (because I have very low IgE due to the CVID). That Dr ran a test of my blood sodium level and found that it was dangerously low (121). He told me to get an emergency visit with my neurologist to get off of the Trileptal, as Trileptal is known for pushing blood sodium levels down in some people. Luckily, my neurologist had found a new seizure drug called Vimpat (Lacosamide) that seems to work well for me, is not on the list of seizure drugs that may cause CVID, and has minimal side effects...another miracle drug...I hope it is as good as it seems.

My June '11 Appointment with the Immunologist

In June of 2011 I had an appointment with my immunologist. After much discussion, we decided to stop my IVIG infusions (at least temporarily) due to the fact that they were so negatively impacting my quality of life. Even after switching to Gammagard S/D as a weekly sub-Q treatment, I would still lose 2 days every week recuperating from my infusions. I was working full-time and switched my schedule to 10-hr days so I could have every Friday off to accommodate my 8-hr infusions. Every Saturday was spent in bed recuperating, and by Sunday I'd be able to walk around and have a less-intense headache than Saturday...basically every weekend sucked. To make matters worse, in order to keep the side effects minimal, I was on oral steroids the day of my infusion and the day after, and those steroids significantly impacted my mood and many aspects of my life. All-in-all, I was pretty miserable and often thought that I couldn't face a lifetime of infusions every week.

So we stopped the infusions and my Dr put me on daily prophylactic antibiotics. I now take 250 mg of Ceftin every day. It seems to work as well as the infusions at preventing infections. I'm getting sick at the same rate (about once a month), and when I'm not sick I feel pretty darn good (comparatively). I was afraid that my energy would drop off, but instead it's increased significantly. The combination being off of the Trileptal (which may have caused the CVID) and being off of my infusions also accommodates that nearly-impossible goal that will allow me to find out whether I was born with CVID or whether I had the right genetic makeup for Trileptal to trigger it in me. It will be good to know.

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

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.

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