Hi everybody,

I am hopefully going to receive my first subcutaneous IG infusion within the next few weeks. I have to travel from Colorado to California to see my old immunologist to receive it as nobody here wants to give me the infusion due to my past reaction to ivig. I would like to know if anybody here has switched from ivig to scig and what the results were. Did anybody do better on the scig? (I really hope so!) I had a bad reaction to ivig two years ago and haven't had an infusion since and my levels are very low (Igg, Igg subclasses 1&3, and IGa and Igm are all very low). The CA immuno sounds willing to try the scig and his nurse told me that many people who were unable to tolerate ivig are able to tolerate scig. I hope this includes me, we will see. Any info is appreciated!

Thank you,
Joann

Joann,

Hi my son is on IVIG & doing very well. However his doctor did mention scig & that people do very well on it & it has little side effects compared to the IVIG. Just make sure you are well hydrated a few days before infusion & you might want to check to see if they want to pre-medicate you with tylenol & benadryl 30 minutes before the infusion. The tylenol & benadryl usually help prevent any side effects.Hope all goes well!!

Health & happines,

C.P.

Shelbie is starting the new scig next week. She is 13 and getting IVIG since she was five. She does take pre-meds before each IVIG. She takes Motrin and Phenagran [sp?]. She is looking forward to not having to lay in a hospital bed for five or six hours. I am really hoping this works for her.

C.P.

I am very glad your son is doing well on ivig. When I had my two ivig infusions I did the premedication with the tylenol and benadryl too, but still needed an epi shot when the infusion was stopped short due to the reaction. I'm really hoping that I get good results with the scig.

mom--mom6,

I hope Shelbie does great with the scig, I think that the ability to infuse at home is such a huge benefit and I hope everything goes well for her!

I'll post again here once I receive my first scig, hopefully (hopefully!!) with good news

Joann,

You did not say what kind of reactions you had on the IVIG? Their are different brands that you might do okay on if you want to try again. But- I have heard that the SCIg has little to no side effects. So you might want to go ahead & give it a try first. Either way I hope all goes well & you get the relief you need!! TAKE CARE!

health & happiness,

C.P.

My son went on a 9 month subq protocol. In the end he went back to IViG. His conclusion was why deal with it every week when you can get an infusion at home. On subq, he heeded to do 6 sites every week for 90 minutes. On IViG He infuses 50 grams at home in about 150 minutes with no side effects. He didn't feel that it gave him any more energy or fewer infections.

I've been in IViG for over 25 years and have no desire to do subq. My infusion top out at 400 ML and it take me about 120 minutes to get my 60 grams. I take no premeds. Why change???

Shelbie had her first SubQ yesterday and had absolutely no problems. She took her normal pre-meds and breezed through it. She was pleased and wants to continue on next week. She is 13.

MarkinCleveland,

That's great that you and your son are able totolerate the ivig. I see the benefits of only getting it ONCE a month. When I received the IVIG I had a severe headache, chills, throat closing, etc. I couldn't even ask for help, I just laid there and shook until another patient called the nurse. This was done at a cancer center. They were very patient and determined. They stopped the infusion, gave me a lot of benadryl through the iv and resumed about an hour later at a very slow rate, never increasing the rate. The total infusion took two days but it worked. After about two days of feeling sick, I felt great for about 3 weeks. My second infusion was done at a different center at my immunologist's request and the nurse was impatient and doubled the rate of my infusion within the first hour and a half. Of course, I reacted and as soon as I did the nurse stopped the infusion and told me that I cannot tolerate ivig. I have argued ever since that I CAN but it's been two years of this. Finally, (with new insurance) I was prescribed the sub Q and this is my last resort. I flew to California from Colorado to get the infusions and found out that the info was not turned in to my insurance as I was told it was. So...I came home frustrated and need to go back. Traveling with CVID when you are sick is not easy, but I am determined! Thank you everybody for your words of advice and experiences! I will post here once I finally receive the vivaglobin.

I am so happy that Shelbie had a good experience with SubQ!! Please keep us posted, she is such a trooper!

Joann

Shelbie had her second SubQ yesterday and, again, did very well. They are going to change her number of sites from two to four. They have the Visiting Nurse one more time then they are on their own. Her Aunt is a nurse and has been there for both SubQ's and can help in the future. Shelbie is looking forward to doing the whole process herself. She didn't take pre-meds yesterday and got a slight headache which Tylenol took care of. She likes this much better than the hospital. We like the idea that she is keeping her levels consistent all the time instead of it getting lower towards the end of her four weeks. Hopefully, this will heal her big toes. She had surgery on April 16 on both toes and they still aren't healed. She also has a broken ankle now. She was brittle bones and this is her third broken ankle.

Sub-Q IVIG is being prescribed in my state but on a limited basis due to the pre-qualifications required. Depending on the diagnosis for which the IG is ordered, the dose must be within range according to the quantity of medication to be delivered. Delivering IG sub-Q is supposed to be good for several reasons: 1) low to no side effects 2) less interruption of the patient's daily life. Not everyone will be a candidate for this but for those it works; it is great.

I have heard several presentations on sub-Q Immune Globulin and they all are not the same theory. One recommends that you should establish a "pocket" with infusing in the same locations every time. (this makes good sense to me) and another suggesting that areas be rotated. I think that you would want to establish several pockets and rotate the sites. Aseptic technique and compliance is mandatory to avoid infection.

I was diagnosed with CVID earlier this year and began researching Vivaglobin as soon as it was advised by my Immunologist. I also happen to have RA so I take Methotrexate and have infusions of Remicaid every 6 weeks, so the prospect of yet another infusion was a little unnerving. After lots of research, questioning and soul searching I decided to go forward with the treatment. I still didn't feel comfortable with it, but agreed to it. I began in May. The purpose of this is not to frighten anyone, but to let everyone know what my particular experience was.

I had many of the common reactions, but the visiting nurse did say that mine seemed a little more severe than anything he had seen before. By June 1st I was beginning to get bad enough headaches to go to the ER. Initially I was diagnosed with migraine headaches and given pain medication. On June 25th, I was admitted to the hospital and a spinal tap was done. I was diagnosed with Viral meningitis. They immediately began an antibiotic via IV (which is effective in only one of approx. 70 strains of viral meningitis). I began to spiral - to make a long story short, my kidneys were now failing.

After a long hospital stay and string of doctors, the over-all opinion was that the Vivaglobin caused the meningitis and several of the doctors (including the Infectious Disease, Pain & Drug specialist & "Hospitalist") all agreed & all said they had seen this before. The renal failure was the reaction from the antibiotic (Acyclovir) given.

At present, I am out of the hospital slowly recovering (my kidneys are functioning at 40% but slowly improving) and I am told the meningitis will continue to improve. I have been told not to continue the Subq IV, Remicaid or Methotrexate for now. The Infectious Diseases doc tells me there are other ways to combat CVID and when I have recovered from everything, we will begin to tackle it.

I hope this helps someone. If nothing else, if your "gut" tells you to keep looking, then keep looking! If you have several complications involved, do your research, be your own advocate and have someone close to be your advocate in case you aren't able to. That's what saved my life!

I'm glad you are on the mend.

You say the over-all opinion of your doctors was that the Vivaglobin caused the meningitis.

What do they base their opinion on? Did they report their finding to the FDA? Did they report their conclusion to CSL, the drug manufacturer?

Are there any other cases of viral meningitis associated with the specific batch of Viva you received? I would think that if it was contaminated more than one person would contract the disease from batch.

I've never heard of virus transmission through IViG or subq gamma.

I've toured IViG plants. The numerious viral removal steps and tests, from collect to manufacture, every batch goes through makes it very difficult for me to accept that you contracted he illness through the Viva.

Please keep us posted on your progress and the investigation of your "contaminated batch."

Joann: I am new here. But i have been doing subq for over 5 years now. Have not had any problems with it. I live in colorado and i am seeing Dr. Michael Alan Volz, i have had issues with ivig in the past. But he has seen me thru, and continues to be my doctor. I have had problems with veins to products itself. But even when the severe reactions i have been thru he stood by myside. He is located in the tech center. On bellevue off of I-25 south. then he has his port office in broomfield close too me. ANd i am also involved with Immune Defiency Foundation , and i am a volunteer peer contact , and hold support meetings here in colorado. Our next meeting in october , and Doctor volz might be lead speaker, just waiting for reply. he has spoke at our meetings before. We have had many colorado doctors who are at our meetings, all immuno doctors. I hope i have helped. If you need to talk to me , let me know and i will get with you. I have been doing ivig therapy over ten years now. And doctor volz has been my doctor.
susan rhodes

Susan,
Thank you so much for your response!! I drove out to Colorado Springs on Thurs to see a Dr., spent two hours with him and he won't do my infusions or be my Dr. It was so frustrating. I live very close to the tech center and I'm so excited to hear that there's a Dr. close by who does subQ. I'm so glad that the SubQ route is going good for you! I'm going to caLL Dr. Volz Monday morning and hopefully he can treat me. I'll keep you updated. I'd love any info you have on the foundation and the meetings in Colorado too!

Thank you,
Joann

Susan,

I have an appt with Dr. Volz next Monday the 28th. His office was very friendly. I hope he'll take me on a as a patient. I have CVID, is your PID similar to CVID? Thanks again!!
Joann

jOANN: I HAVE CVID. TELL DOCTOR VOLZ , I RECOMMENDED YOU. MAYBE HE CAN HELP YOU. I HOPE SO. MINE IS LOW IGG LEVELS TO PNEUMONIACOCCAL, AND STREPCOCCAL I HAVE NO ANTIBODYS THERE TO FIGHT. AND LATER ON THEN TURNED INTO CVID, AFTER YEARS.LIKE I SAID BEFORE , I HAVE BEEN THRU A LOT OF DIFFERENT OCCURENCES, AND HE WAS THERE . SO I DO HOPE HE CAN HELP YOU. LET ME KNOW HOW IT COMES OUT.
SUSAN

Joanne: Here is a name of a lady that can help you in colorado too. Her name is Paula Carter. she will be contacting you soon. Right now due to some things. I will not be helping with the meeting in colorado. But you can get on the foundation mailing list and they will send you the info. But paula will let you know how. I will be checking on here for awhile. And do let me know how Dr. Volz does, and if he can help you. I am praying for you. And he is a good doctor.
Susan

Susan,

Thank you for your help and your prayers. Since we both have CVID, I am VERY hopeful that your doc will take me on as a patient. I've had moments where I've given up on healthcare period, after all of the stress I've been through, but like you and most everybody else with this illness, I have to pick up and keep fighting. My IGG, IGA, and IGM are very (very!) low as well as most of the sub-classes. I have no resonse to Pneumococcal vaccine, but I do have a response to tetanus. But, my CA doctor said that tetanus is not a good indicator. The infections are non-stop and I don't even drive right now, so basically CVID is winning at this point:-( but I know that the scig will help a lot. Thank you for your help and you will be in my prayers as well.
Joann

I can give you paula's email. And she says you can email her at anytime.

keysfins@earthlink.net, so any info you need you can email her anytime.

Sorry for inconvenience, i will keep in touch. I am sure doctor volz will help you. I would be shocked if he turned you down. Cause over the years of treating me he never gave up on me. And i my health took him ways he had never had with a patient. I guess thats how you draw a bond with one. So hang in there . I will still help when i can . And if you want to email me. My email is suskat01@msn.com . So i will help with questions with doctor volz. so let me know.
susan