Sorry, I had to make it through the last 2 days myself, so I'm just catching up now. I woke up really early because I slept a lot the last 2 days.
I do react to IVIG. Both my doctors think its fighting with my autoimmunity. I was in the ER early on with aseptic meningitis before I figured out how to manage the symptoms better. I've done about 10? cycles, and the last 3 have gone better.
My ME/CFS doctor set me up with a protocol with meds, drip speeds, etc. which greatly helps the day of.
The 2 days before, I drink 1.5 times my normal amount of water each day, I take zantac and compounded fexofenadine and ketotifen.
After those meds, I get 120mg Solumedrol to start off, then take naproxen (its the only NSAID I dont have to have compounded), and then 50mg injectable benadryl (I'm allergic to all oral versions). I eat breakfast right before, so there's something in my stomach.
That knocks me out for a couple of hours while the nurse starts the IVIG at my house. I wake up get hungry and eat a light lunch, then get 25mg more benadryl and have another nap. Then, I'm awake for the rest of the day. I get another 25mg before the nurse leaves around 730pm.
Around 3pm the headache and neck pain start and mybintestines are unhappy. I use Quicksilver Colorado Hemp Oil, Thorne Meriva, and Thorne Boswellia to reduce the headache and inflammation, about every 4-5 hours. And naproxen if I absolutely have to as its hard on mitochondria, no more than 1.5g in a day.
Around 11, I inject 50mg Benadryl (after getting in bed) which knocks me out. I wake around 7am and feel fine for 3 hours, I start taking compounded dexamethasone, which I'll do daily for 4 days, 12-16g in 4mg doses spread through the first day, then 12, then 8, then 4, before returning to my usual compounded hydrocortisone.
I get in the car and drive just in time to get to my naturopathic doctor's office, where I fall completely apart. Like clockwork
Yesterday, I was vomiting, had diarrhea, a slight fever, and couldn't tolerate sitting in a recliner chair and had to lie down. I took some compounded ondansetrin for nausea and more hemp oil and Boswellia throughout the day. They gave me 50mg benadryl and then I had a nutrient IV with glutathione and curcumin. The horrible symptoms lasted 3 hours and I was in tears from the pain, the nausea, and intestinal upset. Fortunately, the nurse knows me well and they took good care of me. I felt much better after the IV.
Then I had. 25mg more benadryl and a double espresso from the cafe next door before driving home (somehow, 25mg doesn't knock me out, but 50mg does.) The rest of the day I relaxed, ate a light dinner and went to bed around 10 to wake up at 4am.
I have a slight headache now. My intestines will have shifted to being constipated for the next 5 days. I'll taper of the dexamethasone and use hemp oil, boswell, and Meriva (curcumin) to manage my symptoms. For my intestines, I'm taking a Xymogen ptobiotic with Klaure Labs Galactoimmune and Thorne FiberMend.
By day 7, my intestines, the lagging symptom will normalize. By day 4, the headache and stiff neck feeling will be gone. Days 4-5, I usually have a step is crash as I'm getting of the dex and back onto HC. And then I feel great for 2 weeks and live life fairly normally, increasing my activity.
Do I re commend this for everyone, or even for you? No.
My point in relating all of this is that having a strategy to manage symptoms is really important. I found a protocol that works for me. I had an immunologist, my ME/CFS specialist, and my naturopath all give me help and advice to get me through it. But I now know what to expect each day and how to manage myself to stay out of the ER.
The benefit is that, even though its been a roller coaster, I've been gradually improving, and am much better than last August. Its allowing me to work other issues since I'm not so sick, like working on my mitochondria and metabolic traps I seem to be in.
I don't really like taking all of these drugs. I'd rather find natural things to get the job done. But IVIG is s major shock to my system that I need. I've had to delay twice and both times, I felt rundown and sick until I got it again, so I know its helping.
I believe my MCAS has been a huge factor in my reactions to it. What I described above is about a third the intensity of the first 3 cycles. The last 4 have been manageable and tolerable (with the horrible 3 hour exception) as long as I stay on my program. I put all my meds in an open plastic box that goes with me everywhere for the first 4 days.
All of the oral meds, except naproxen, are compounded. I react to the inert ingredients in all of them, especially antihistamines and steroids, which all seem to have milk or corn products or both. Getting access to these meds was a challenge. I had to go through a lengthy appeal process with my PBM 3 years ago, but once they understood my allergies and MCAS, they grudgingly acknowledged that I am a patient who needs compounds. They assigned a nurse who inyerviewed me about my health conditions and approved all my prescriptions for medical necessity before they go into the reimbursement process.
I keep her updated with my changing diagnosed and overall treatment plan and I get T4, hydrocortisone, estril sand testosterone compounded, in addition to the meds above. Having my endocrine system supported through all of this is essential. I have Hashimotos, adrenal insufficiency, and has my ovaries removed, so I can't function without hormone support.
Anyway, keep at this. Keep working with Maitland and your other doctors. Being so sensitive to everything is hard. Get the supports you need - work on accessing compounded meds to help you through this.
I'd wonder if the SCIG is just a path to ramp up to a higher dose of IVIG. I couldn't imagine going through symptoms more frequently and my ME/CFS doc said to get after my autoimmunity, I really needed to be on a higher autoimmune dose which was too much to do as SCIG.
I am aware that I could go into anaphylaxis at any time. I gave had 2 reactions in front of the nurses, so they believe me, and understand what to do to save me. So far, the injectable benadryl has been enough, but I have 2 EpiPens on hand, too, and I live 5 minutes from the hospital. If I were more reactive, is probably want to be in an infusion center, but I'm tired of that drill and enjoy being able to sleep in my own bed if I need to, or sit on my patio with thefloerres out and the birds singing as I did yesterday.
I know this is tough, but you can do this. There has to be a way. You don't have to do it how I do it, but hopefully, I've given you some clues to funding a path that will work for you. We are here for you if you need us.
Now...I'm going off to find that dexamethasone.. . wish me luck!