September 30, 2021 at 4:02 am #17297Jodi EndersKeymaster
I noticed several trends when looking back at the responses to an older topic on IVIG side effects. IVIG or Intravenous immunoglobulin is an infusion of immune proteins administered into the bloodstream (Hizentra is via injections beneath the skin). IVIG consists of immune globulins collected from donors and acts to destroy harmful antibodies in the bloodstream that mistakingly attack a person’s tissues and organs and block the production of new ones.
Of those who responded to the previous topic, IVIG is used as a treatment to quickly suppress the immune system during an MG crisis, before surgery, as a temporary medication, or as scheduled treatments. Most individuals in our forum receiving IVIG do so on a monthly regimen. Of those who receive treatments planned, some begin experiencing MG symptoms when they are due for treatment, drooping eyelids being the most discussed.
Those who experienced consistent trouble accessing veins mentioned the ease of the treatments after receiving a chest port to eliminate the arm pain.
IVIG may cause headaches, body aches, and chills during the infusion. Nausea and fatigue were the side effects most noted by forum members. Someone mentioned experiencing migraines, but minor headaches are more common.
Overall it appears most individuals who have consistent IVIG respond well without harsh side effects for at least a period and notice improvement with treatment. Sometimes improvement from the infusion is seen rapidly. Still, the improvement from the drug is sometimes not apparent until one medical team decides to alter the dosage or discontinue the treatment. Sometimes, the body stops tolerating the therapy after a while, forcing patients to switch to an alternative infusion.
September 30, 2021 at 2:47 pm #17299Vicky SaffersonParticipant
My husband is currently in the hospital for his first IVIG series. Mestinon and Prednisone were ineffective in controlling his double vision and drooping eyelids. He has now completed two infusions of a four infusion regimen, which is being administered at 10:00pm. He is being pre-medicated with Benadryl. When he wakes up after the infusion, he is experiencing throat tightening, difficulty with swallowing, esophageal burning, thick post nasal drip, and dizziness, which are being attributed to the Benadryl. His doctor says that administering Benadryl is part of the IVIG regimen, and there are really no alternatives. Has anyone else experienced similar side effects, and if so, what did you do about it? So far the IVIG has had little effect on his MG symptoms, but he wants to complete the series to see if it will help. But the Benedryl side effects are making this a horrendous experience.
October 1, 2021 at 7:35 pm #17310
I’m sorry to hear that your husband hasn’t experienced any improvement in his symptoms with the IVIG infusions. I have had several IVIG 5-day infusions that seemed to help my double vision and droopy eyelids, though it was very temporary. This response caused my neuro to feel that the IVIG wasn’t really helping me. It wasn’t until I was put on a maintenance regimen of infusions every two weeks that I noticed a sustained improvement in my vision as well as elimination of other MG symptoms.
I receive my infusions at an infusion center, and I am allowed to take Claritin instead of Benadryl. This is primarily because I get too sleepy with the benadryl and have to drive home alone after treatment. I also premedicate with Tylenol to help with headaches during and after the infusion.
December 31, 2021 at 10:18 pm #17935AnonymousInactive
Happy New Year, as with us all its been a Wild and Crazy Year. I hope 2022 is a more calming 12 months..
I was administered IVIG, once a month thank You! After. After a shortened 2 years, thousands of complaints to my neurologist I lapsed in a coma during the first Sunday of April 2014.
Doctors were told about my disease and treatment. Everything was ceased. Plasmapheresis was used.I was in the coma until October 2014
My reactions to IVIG was I almost died. A doctor giving IVIGi his own contrived Cocktail.
Reactions are very personal. If your provider is knowledgeable you’re very lucky.
October 7, 2021 at 12:58 am #17347Lou VenemaParticipant
First, I have a question. When people say that they are in the hospital for their infusion, is that as in or out patient? I’ve have been doing this for 6 years now and it is always as an out-patient.
Moving along, when I first started infusions we received Benadryl by injection and it knocked me hard. My infusions were filled from a storage tank to an IV bag. They were refrigerated, and cold. Sometimes the cold even hurt. Now I get a Benadryl tablet and 2 Tylenol tablets when I first arrive. Then they proceed with the rest of the production. We now get the IVIG in sealed bottles and it is warm. When I first started it took 3 hours and 45 minutes, just for the infusion. They took my vitals every 30minutes by machine. Those hurt. This drawn out affair took away any energy I had left over. Now, if the infusion is brought up quickly, I am out the door in about 2 hours and 30 minutes.
The only problem I could attribute to the IVIG is that is is very hard on the veins and caused havoc until I got my port. Other issues are attributable to the other things; pain from starting IVs, Benadryl making me very sleepy, sore arm where the IV was inserted and pain from the IV when I moved the wrong way.
If you are having problems due to the infusion, tell your nurse immediately! They know what they are doing, what causes what, and how to fix it. That includes problems between infusions. They will help you understand what is happening and what you need to tell your doctor. Also tell them if your doctor changes anything and see what they think about it.
Being treated at a VA hospital is a blessing. When I get my infusion there are probably 5 or more guys getting the same thing somewhere during my time, plus after I leave. My VA neurologist treats all those other people with 2 or 3 associates doing the actual office visits. My personal neurologist has had about 5 total MG patients in his practice and only one gets IVIG.
Is your neurologist experienced with treating MG to more that just a few now and then? Is your infusion center experienced with MG infusions all day every day? Experience makes a big difference. It also helps that my personal healthcare team personally knows my VA neurologist as he used to work at their hospital. They have made a few calls to him.
If you are not happy with your treatments, find another doctor. MG is a pretty rare disease and not a lot of doctors know a lot about it. See if you can find a teaching hospital. Call a few hospitals, if available in your area, and see if they can help find an MG specialist. If you have a university with a medical program see if they can help.
Don’t let the doctor practice on you. I see a lot of people are on prednisone. I had a few doctors at the VA complain to me about how my doctor should be using that instead of expensive IVIG. I told my doctor I didn’t want it and that was that. He agreed with me, by the way.
Good luck to you all on your journey. May you all be blessed with healing and a return to normal life.
December 29, 2021 at 9:14 pm #17905Rick BParticipant
Soon I will be starting IVIG treatments. I have read where a potential side effect is blood clots. Does anyone have any knowledge/experience related to this? I have very serious coronary artery disease so blood clots are a real concern to me.
December 31, 2021 at 4:45 pm #17925ChrisMParticipant
Rick, I had 3 lots during a month of crisis and no problem with clotting. I had more challenges with three lots of plasma exchange with clots blocking the flow slowing it down.
December 31, 2021 at 8:33 pm #17929Maureen GoszParticipant
When I was doing the treatments, before I arrived they told me to take 1 benadril,& 2 Tylenol. It usually took around 3 hrs. Every 30 minutes they monitored me. I did have the chills, nausea & fatigue. I really didn’t notice any significant improvement. I did these 2 days in a row.
Also, my insurance didn’t deem these medically necessary, even with my deductible met, I had to pay a significant amount. For 2 days of treatments, it costed $28,000. Needless to say, there’s no way I could do this.
December 31, 2021 at 8:49 pm #17930Charles KarcherParticipant
I had IVIG treatments after my MG was not controlled by plasmapheresis and Mestinon and Prednisone. I was never given Benadryl or anything else but saline with the IVIG. I had the five day treatment in the hospital. After a month of twice weekly treatments I was switched to Soliris. The side effect I remember was fatigue. I do not remember arm pain or headaches. Even at age 70 I have very good veins.
December 31, 2021 at 9:23 pm #17932
My MG shows up as weak legs and arms, muscle contractions with ache and pain, with an occasional left eyelid that sticks shut in the morning but then works as the day goes on. I have been receiving 2 days of IVIG infusions for over 2 1/2 years (40 grams each day) every 4 weeks along with Cellcept (immune suppressant) 1000 mg per day. It has definitely helped in the past. However, I am now noticing that the treatment is beginning to not work as well for me as my legs feel weak and the aches and pains continue even after treatment. So, I have an appointment to discuss starting Rituxan infusions that were suggested by by Neuro doc a few months ago as a next treatment option.
I am a Kaiser HMO Medicare patient and the cost is covered with only a very small copay (for which I have financial assistance from Kaiser). Yes, I see how much it totally costs and is billed to Medicare. I am really medically fortunate to be a Kaiser member in California. The routine described by others is the same with me. I am given 1 Benadryl and 2 Tylenol 30 minutes before infusion starts. The expert IV nurses at the outpatient infusion center are old hands at this treatment method as I see many others with the identifiable bottles hanging from the poles.
On infusion days, first bottle of 20 grams is infused gradually with the titration rate changing every 15 minutes and takes approximately 2 or so hours. The second bottle of 20 grams is infused at a full-on rate and takes about 1 hour. Other than feeling sleepy from the Benadryl, I have had no reactions from this IVIG treatment. During the process, I bring my tablet to watch videos and read magazines that have accumulated, as well as doze off at times. From medication to bandaging the IV site I plan on 3 3/4 to 4 hours at the center. Yes, they check on me frequently and I get vitals taken before and after infusions.
I drive home myself afterwards. The biggest thing I notice is urinary urgency and incontinence for a while after receiving all the fluids! However, I am told to keep hydrated as the IVIG is a concentrated protein mixture.
December 31, 2021 at 11:10 pm #17937
I’m glad to hear that your infusions have helped with your MG symptoms. Are your infusions for 2 consecutive days? Do the nurses have to put an IV in for each infusion or do you have a more permanent IV access/port? I’m just curious as the frequency of my IVIG infusions will be increasing at the beginning of the new year.
January 1, 2022 at 1:56 am #17939
Yes, my infusions are on 2 consecutive days. I have them scheduled on Saturday and Sunday each month as the parking is easier and the infusion center is quieter! I do not have a permanent IV or port. When they put the IV cannula in on the Saturday in my lower forearm, I keep it in until the next day so I only get stuck once each month. I just remind the nurse that I want it kept in for the following day. They prepare it to stay in for the next day by putting a little antibiotic ring around the cannula sight and anchor it with a clear sticky cover bandage. When I am finished on the first day, the cannula is flushed and capped with the cap part then wrapped in gauze around it because it is bulky and more stable with the gauze wrap. Then the whole area is incased with Coban, a stretchy tape, and the area is then covered with a stretchy sleeve like “blanket”. It then stays nestled in its “bed” until the next day. I never had a problem sleeping with it and only once in all this time did it not function for infusions the next day. Of course, no shower Saturday night with that in! (I suppose I could wrap it in plastic for a shower Saturday night but why bother and take a chance of disturbing it!!) Waiting until Sunday night when I have completed my infusions is fine. Having infusions this weekend, (but Sunday and Monday because of the holiday) I’ll try and attach a photo later so you can get a visual of what I am describing.
January 1, 2022 at 9:51 pm #17944
Thanks for the information. Wishing you the best on your next IVIG infusion. A photo of the setup would be great. It sounds you are getting great care at your infusion center.
I am also a Kaiser patient (in another state). I was told that I cannot leave the IV in place between my two consecutive days on infusions. I was a little surprised as they left it in for 5 days when I started my infusions earlier this year and received 5 days in a row. It certainly doesn’t make sense for them to pull a perfectly functioning at the end of the 1st infusion and then put a new one in less than 24 hours later when I return for the second infusion. I’m getting infusion 2 days every other week–so that’s a lot of IV sticks. 🙁
January 4, 2022 at 3:08 pm #17965
I have great photos of my setup but can not attach them to this system. The ring shaped antibiotic patch is called Bio Patch (printed on it) . FYI https://www.jnjmedicaldevices.com/en-US/product/biopatch-protective-disk-chg
And after I am done with day one and my setup is encased in Coban, a knitted-like “stockinette” sleeve is put over it. FYI https://www.google.com/search?q=stockinette+dressing&rlz=1C1CHWA_enUS688US688&oq=stockinette&aqs=chrome.2.0i433i512j69i57j0i512l8.11086j0j9&sourceid=chrome&ie=UTF-8.
It is usually used to go under casts but they use it over the Coban to kind of protect the wrapping. Next infusions are 4 weeks away! Sorry I could not send my photos.
December 31, 2021 at 10:53 pm #17936
Message #17932 Correction on my Cellcept dose: 1000 mg 2X/day so 2000 mg daily.
January 1, 2022 at 2:43 am #17940TheresaGParticipant
I just completed my 4th round of IVIG infusions. I go every 2 weeks 2 days in a row to an infusion center. I too am given Benadryl for any allergic reaction and 2 Tylenol. This week as I am not a 4 time veteran, lol, I asked if we could pass kn the Benadryl to avoid the fatigue and I also regularly take Zyrtec , nurse said yes as I’ve had no reaction. The only reaction I ever had was 1 headache, due to not hydrating enough between day 1 and 2. They say to drink clear water half your body weight beginning 48 hours prior and 24 hours after to flush kidneys and also to get hydrated. The nurse also told me that the IVIG actually pulls the fluid from the interstitial tissue, which is why many of you may notice a loss of puffiness after the first day. Love losing 2 pounds. Still on prednisone but reducing it. Down to 12.5 mg from 2.0. Yay. I’m at the point where I will only go .5-1 mg each 2 weeks as I am very sensitive to the steroid withdrawal symptoms. I’ve been kn the, for 3 years, different doses from 5-2.0 mg. So it has had its fun with me and I am thrilled to be off.
I have had a very positive response. I feel I am about 80% better after treatment and seems 2-4 day before treatment I begin dragging.
I have likened it to a full tank of premium gas. If you keep the pedal to the floor for 2 weeks, you will run dry, so I “try” to still manage my output so I am as normal as I can be.
my droopy eye persists, so I still use mestinon. I am hopeful once off steroids or at least down to 5 mg, and my body stabilizes, the droopy eye will cease.
I feel that while you are in one hand fixing yourself with IVIG, coming off the steroids creates a hard balance, so until off them I won’t know true effectiveness.
i am also wondering if I need a slightly higher dose to get a fuller tank of gas.
‘Happy New Year to all.
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