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Part 2
@A MyMyelomaTeam Member
California Specialty Pharmacy (CSP) handled the entire process. They didn’t include a pump in the box. Instead there was a different device that works off of gravity to control the flow of the medicines. When the nurse set it to 50, the medicine did not flow. She turned the dial until the medicine (Benadryl) started to flow. I felt very sick as if I had drank to many alcoholic beverages.
Based on the way I felt, I knew the drip rate was higher than 50, but I really wanted this to work. I felt if my doctor knew about any problems with the treatment at home he wouldn’t permit me to continue having them. So, I pushed through the treatment and completed it. Later, I spoke to the pharmacist at CSP about the problems with the flow device and the side effects. She said she would include an electric pump for all future treatments.
If you are experiencing side effects during your IVIG infusions, on your next treatment, ask the nurse what setting do they set the pump on. 50 is the setting that kept me from having side effects.
And, if you want to have your treatments at home, call CSP to see if your insurance covers it. I used my Medicare insurance. I have Parts A, B, G & D.
Also, there’s a lot of controversy about insurance covering IVIG in the patients home. Some say you have to be diagnosed with Primary Autoimmune Deficiency Disease before insurance will cover treatment and won’t cover treatment if diagnosed with Secondary Immunodeficiency which is usually what Multiple Myeloma patients have.
I was diagnosed with Secondary Immunodeficiency and I had an IVIG treatment at home at no cost to me. Also, California Specialty Pharmacy provides their services in many states throughout the country...including Florida.
I hope my response to your post was helpful. I truly believe that IVIG side effects can be avoided if the pump's drip rate is kept low enough.
Vicki7 ☺️
@A MyMyelomaTeam Member
Hi Joy,
When I went to my doctors office for my first IVIG treatment, the nurse told me they were going to go slow. I wasn’t sure what that meant, but the treatment went very well.
Several months later when I went for my second treatment the nurse asked how I felt after the first treatment. I told her I felt OK. She told me they were going to go faster this time. During the treatment I felt slightly nauseous. They told me they would set the pump’s drip rate no higher than 50 for all future treatments to prevent the side effects.
During my third treatment, there were different nurses in the infusion center. The nurse told me she was going to start my treatment off slow and later increase it. I told her I was informed the treatment would be kept at 50.
An hour into my infusion, I started to feel nauseous and experienced chest pains. I had her stop the infusion. An hour later the nausea and chest pain stopped. She told me she had increased the pump from 50 to 100 a few minutes before I began experiencing the side effects. She asked me if I would allow her to resume the treatment if she kept the pump drip rate at 50 and I agreed. I finished the treatment without further side effects.
The nurse was aware the pharmacy informed me my future treatments would be set to no higher than 50. But she took it upon herself to ignore the plan. At the end of my treatment I had a serious discussion with her and she apologized with tears in her eyes. And at my next doctors appointment I informed my doctor about the incident. He showed no real interest. I asked him if I could have future IVIG treatments at home and he agreed.
My next treatment was at home. A package was delivered to my house. It contained the same medications I received at the doctors office (Gammaguard, IV Benadryl, IV Dexamethasone and Tylenol). It was nice having the treatment in my home but even it came with issues.
End of part 1
Continue to part 2
@A MyMyelomaTeam Member
Hi Joy,
Today many doctors aren't prescribing IVIG treatments unless the patient is experiencing infections. The only reason I had my last IVIG treatment was because I needed dental work and my dentist suggested it. And my IvG was below 314 (Reference Range: (Phone number can only be seen by the question and answer creators) mg/dL) Otherwise, my oncologist wasn't going to recommend it.
Two days after my treatment last month (April 2026), I had my blood tested for an upcoming doctor's appt. I was shocked to see my IvG was at 981...well into the normal range. Previous IVIG treatments only brought my IvG close to, but never into the normal range. Another member in the group said my Immunoglobulin levels will return back to the normal range after I stop taking Revlimid which is known for causing low Immunoglobulin levels.
I feel the reason my IvG was well into the normal range was because my doctor reduced my Revlimid from 10 to 5 mg's several months ago. I hope I won't need anymore treatments and I strongly feel that I may not.
If you are not having any infections and your IvG does not drop too low, you maybe able to delay IVIG treatments for a while...or forever.
Take care.
Vicki7 ☺️
I think I will wait on the IVIG treatments.
Yes, IVIG (intravenous immunoglobulin) infusions can come with some side effects and risks, and many people with myeloma have shared their experiences with them.
One concern worth knowing about is the risk of blood clots, which can be associated with IVIG. This is especially relevant for people with myeloma who may already Show Full Answer
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