After getting my second IVIG (gammagard) infusion last week I didn’t have the immediate bad reaction. I did however get some side effects starting on day 2 and I still have them tonight. I did get a slight migraine, head pressure and I could hear my blood rushing through my head for hours. My cognitive issues are worse so I am making up words more often since I cannot find the real words. My daily symptoms are 10x worse, my pain is more severe and I noticed my arthritis is much worse all over in every bone. I doubled my extended release morphine (MS Contin CR) to 180 mg per day (long acting pain killer) with 30 mg of Norco (breakthrough pain killer) and my medical marijuana edible and CBD oil but nothing is touching the pain or taking the edge off. A lot of tears of pain lately.
I am still waiting on my referral to be approved for my Ketamine infusions (for pain) at the pain center. The idiots denied my first referral that took forever to get then told me to resend a referral because they threw out the first one. I am also taking NSAIDS, Benadryl (for the IVIG reaction) and many other herbal pain killers daily with epsom baths. I have been much sicker and starting 3 days ago I have a swollen, painful throat now. I lost my voice yesterday. I thought it was strep throat again but it is not, this is different so I am not sure if this is from the IVIG or a bug from having family around me at Easter. I am usually in the house 24/7 and never around other people except my parents. I rarely go in public unless I need to get a prescription.
I would say the IVIG side effects (not bad reaction) are almost like having a flare or similar in ways to a herx. The bad reaction I had to the infusion, to be honest I would have literally killed myself if I had that pain for a week. My brain was so inflamed I couldn’t think, speak, breathe, move, see…etc. So luckily the second infusion only gave me side effects with no bad reaction so that’s a plus. I am doing a full dose (30 grams of gammagard) in 4 hours although I would prefer 6-8 hours next time.
I am pretty exhausted, I haven’t been sleeping well so I am sure I left out a lot of things that have been worse since the infusion. I have been on the verge of wanting to go to the ER but like I said before I have all of the same meds here at home that they would give me at the ER. The ER always treats me like I am just some freak that knows nothing so I hate when I have to go.
I also wanted to thank all of the healthy blood donors who are helping to save my life, my sister jewels’ life and all of the others who need blood, plasma…etc. I never donated blood because I always knew there were too many medical issues for me to feel good about giving my blood. Luckily I never did with having lyme. I always admired those who took the time to donate but I never knew one day I would need plasma from the blood being donated.
It takes 1000’s of different donors blood just to make one IVIG infusion. Hopefully there will not be a shortage on it one day because so many people depend on it. I need to do what I can to keep my numbers from going any lower and staying out of isolation. My sister is literally in a bubble and cannot come in contact with her own hubby and son. Without the donors and IVIG my sister may not be here today, she’s a fighter.
I hope all of my readers have a great weekend and maybe get to enjoy some sunshine. Whatever you do, do not give up! If you feel alone and depressed reach out to a friend or find a support group and make new friends. I love my spoonie family on IG/Twitter… they have been very supportive. I met some great people in support groups, one girl (my ex) that I love more than anything, one really best friend who is always there for me, and many others who have my back. If you have nobody around then I highly recommend getting on twitter or Instagram and look for others with illnesses. Don’t ever feel alone. Find the beauty in life, look around and when you find it smile. You are alive and breathing and remember someone always has it worse than you do. Take care friends.