My experience has been different. I have autoimmune POTS and MCAS and immunodeficiency, and have only done IVIG, and only for 11 months. Rituximab might be a future posdi policy, but we are trying to see if IVIG can solve my issues first. I also had several chronic infections so gerting them dealt with first is necessary before wiping out B cells.
I will be doing a high dose once a month, and I am really nervous about what I should expect.
How many grams of IVIG per kg of you? Doses range from .4g/kg to 2g/kg. I'm currently on 1.5g/kg a month, but was on less for the first 9 months.
Overall, the treatment has helped me, but going through it is a bit of a roller coaster as
@Gingergrrl has described.
I sleep most of the day of the treatment, which takes 10 hours, then manage side effects for the next 3-4 days. Over time, my side effects have been much better, but they are still there.
Side effects have been nausea and intestinal, but ondansetron, cromolyn sodium, Zantac, and ketotifen helped. I dint get nausea anymore, so only take the other three daily, and have no more intestinal symptoms.
I get Solumedrol, a steroid, the day of, and dexamethasone, a very strong steroid for the next 3 days, tapering down to my usual replacement hydrocortisone dose. The dexamethasone, along with boswellia, curcumin, and a little naproxen (which I try not to take as NSAIDs can cause damage).
And I take 25-50mg of Benadryl 3-4 tines a day for 3 days. It gets injected into my IV, and then I inject it after that as all of the OTC products contain corn which I'm allergic to. At first, the Benadryl would knock me out (plan ahead!) but I seem to have developed a tolerance, so its not so bad.
Will I feel improvement after the first treatment if I have only been sick for 7 months or will it take some time?
This treatment is a shock to your immune system and it's a process. It'll take awhile.
Also, how can I reduce my chances of getting asceptic meningitis? I really don't want to deal with an even more inflamed brain lol
I got it after my second infusion and went to the ER at the hospital.
IVIG products are not interchangeable, they must be matched to the patient. Most of the people around here get Gammunex C, ehich I am on now, but the infusion service started me on Gammaked, which, on paper, is exactly the same, but was much harder on my body.
I woke up at 2am with a screaming headache and stiff neck. The doctor at the ER eas very nice, and they gave me IV Benadryl, dexamethasone, and toradol, an NSAID. I was there for 6 hours... I learned the best thing to do is to take the drugs at home and skip the ER...so now, if I sense the headache and neck stiffness starting up, I start with 2g boswellia and 2g curcumin (which reduce inflammation), take Quicksilver CBD oil (makes the headache go away) and dexamethasone.
There is no way that I can predict what you will feel b/c we are all so different but I can tell you my personal experience. In the immediate days following IVIG, I have a headache, neck stiffness, and sometimes an immune reaction with low-grade fever, chills, muscle pain, etc. This is normal and will pass within a few days post-IVIG.
I've had the same symptoms, plus the intestinal ones.
So while it was life-changing, and has exceeded my wildest expectations, it was not a "quick fix" and was not an easy road to travel.
Agreed.
Second: I would do the slowest infusion speed possible, even if this takes 7-8 hours.
Slowing down the infusion rate is the #1 thing to reduce aseptic meningitis risk. Even if you feel okay during the infusion and a nurse pressures you to ramp up the speed, I would not do it. My doctor wrote on the order that my infusion cannot be faster than 8 hrs per day.
My infusion is slow for the first hour, then faster for the rest of the time. Not as fast as for immunodeficient patients. But because its a bioligic product from different donors, different batches can affect you differently, so they watch you for a reaction before speeding it up. And they keep an anaphylaxis kit on hand.
Third: if your dose is high, I would split it into several days. When I was doing 82 grams, I did it in a 3-day split dose and when we tapered me down to 55 grams, I did it in a 2-day split dose.
I have no trouble with 55g done in one day. If I were to double it, my doctor was going to have me do it in two.
Fourth: I would make sure that you get adequate pre-meds for your own situation. For me, they are Tylenol, Pepcid, and Atarax (but they vary for each person's situation). Many people require steroids for IVIG but I do not do well with steroids and react better without them.
I need the steroids and couldn't do it without them. They give me the Solumedrol first thing, then 50mg Benadryl and start the IVIG..i usually sleep for the first hour. I did take naproxen, but don't anymore. And I take the cromolyn, ketotifen and Zantac every day, including the day of IVIG.
Last: I would (at minimum) do the first few infusions at an infusion center vs. at home. I've done all infusions (for 2 yrs) at an infusion center that is connected to a hospital b/c I am too high risk allergically to do them at home (even though I've never had a problem in 2-years). But, if you are doing them at home, I would have an EpiPen available.
I have MCAS, but I was not as sensitive. And, having had cancer first, I'm tired of sitting around infusuon centers in a recliner chair. I love doing it at home, where I can take a shower, sleep in my own bed if I want to, make meals, and go outside in my garden.
The infusion service sends a nurse to my house who is dedicated to me all day. I even had to take the nurse to my office for an emergency and to a doctor's appointment (I didn't drive.)
There's an anaphylaxis kit with epinephrine and the hospital is 5 minutes away, but I have felt 100% safe the entire time.
Am I allowed to choose my premeds (steroids, benadryl, zantac) or do they choose for me? I would love to try it with steroids because I have been wanting to try steroids anyways
Be careful what you wish for! Steroids have a strong effect on your body, can affect bone health, and make you gain weight. I've gained 10 lbs in the past year due to the dexamethasone. My adrenals didnt function well to start with, and I take replacement dise hydrocortisone to function, and it's tricky switching on and off the stronger steroids all the time.
Your doctor should take your situation into consideration and come up with a plan thst works for you.
Taking Thorne Boswellia, Thorne Meriva curcumin, and Quicksilver CBD oil is pretty effective and not so hard on the bodt, so you might consider them.
I'd guess that even though many infusion centers would not allow the patient to bring their own pre-meds from home they would always follow whatever is written on the order. So if your doctor writes a specific steroid, Benadryl and Zantac, then this is what you would be given. When I do Rituximab (vs. IVIG), I do get IV Benadryl and this is administered by the infusion nurse.
Agreed. You need to be able to give your doctor feedback and be able to ask questions and he/she will instruct the nurses. Instructions can be written with leeway to adapt to your changing needs. However, IVIG is a major intervention and something to be dealt with thoughtfully.
Best wishes as you go through this process...