Hi,
I wanted some opinions on switching your treatment plan from IV Immunoglobin to SQ Immunoglobin. I currently have CIDP. I was diagnosed just over a year ago. I have been getting my Immunoglobin every 3 weeks administered IV in an out-patient setting. I have not had any horrible side effects and I do pretty good between treatments with only minor side effects. But I hate wasting every 3rd Sunday at the U of MN in the depressing infusion center. I also want more control as to when i get the infusions. I have had to miss a few infusions and push it out to 4 weeks due to a schedule conflict. I don't want to do my infusions during the week as I don't want to burn any more sick time (I only get 4 days a year!). Plus I worry about my veins failing sometime in the near future due to all the IVs placed in them. I don't want a port! So I duscussed going to SubQ administration with my neurologist. He said he did not have any patients with CIDP on Gamulux SQ but would look into it for me. I have been approved to change over to SQ administration by my doctor and my insurance company. I am nervous. I don't want it to cause me to have more problems or more severe symptoms of the CIDP if I go to SQ. I am told I will probably have to administer the drug more frequently but shorter periods. I currently get it every three weeks and the infusion takes about 4-5 hours total. I will now do it twice a week for about 1-2 hours depending on the dose I take. I am staying with the Gamulux 10% solution at this point because my neurologist thinks it is best not to switch too much at one time...since I do so good on the Gamulux he wants to stay with it for now. We are aware there is another immunoglobin that comes in a 20% solution that would be less amount and time for me. We might think of switching to that in the future if all goes well. My fears are that SQ does not work as well as IV. Has anyone switched from IV to SQ for administration? If so, did you have more problems or less? I have not switched yet. I will have two more IV administrations because of timing and paperwork. I am excited to be in control of my treatments. I can infuse while I am sleeping or relax at home in front of the TV or outside. I don't have to leave and go to an infusion center on Mother's Day or Father's Day (I have one scheduled this Sunday). Any input or information regarding the switch would be welcome. Thanks. Jane
Hi Jane,I am debating this switch myself so I would appreciate any answers you get to this question.i have been getting so sick from the ivig treatments. Drs are trying to lower the dose to see of that helps but SQ might be the way.
I will let you know once I start to receive the SCIV. It won't be for a few weeks as I am on IVIG every 4 weeks. Just got my last dose yesterday in the center. Now I need a nurse to come to my house in 4 weeks for one more IV dose and then two weeks after my last IV dose I start SQ. I am really excited to be in charge of when I receive my medications. I am curently on 35 grams of 10% Gamulux. I want to try and get down to 30 grams and see how that goes. I do not get any symptoms from IVIG. I am switching for conveinence more than anything. But if it does not go as smoothly or symptom free as IV I will switch back.
Good luck. I will be waiting for your posts to see how it goes. I know you said you didn’t get any adverse effects from the ivig but I am sick for almost the entire 3 weeks between doses. I heard people get less effects from SQ. Does a nurse have to show you how to administer the drug? I was getting 30 grams 2x a week every 3weeks. Dr thinks it was too much and I was getting toxic. So now she tried just 30 grams for the one day. I am into my second week and although I was really sick, it was only for 4 days. Now, I am waiting & hoping that was enough juice to keep my cidp symptoms away. How are you doing with the emitional stuff? I am still having a really difficult time. A friend asked me to join her MS group so I think I might. If you feel like talking about it or can offer any advice, feel free to email me privately. For so long I have been longing to talk to someone who is in my shoes and knows exactly how I feel. My parents are gone and I don’t have any kids. my husband & friends try but they can’t really know how it feels to worry if you have a future. Thanks, jo
I will keep you posted. I think 30 grams 2x a week every 3 weeks seems like a high dose. It is double what I am getting. You get 60 grams every 21 days and I get 35 grams every 28 days. Hopefully things will settle down on a lower dose. I guess you need to be on a pretty low dose in order to even attempt to give yourself the drug SQ. And yes, I will have a nurse come out the first one or two times to give me instructions on how to administer the SQ infusion. Then I will do it on my own once I feel comfortable. I am looking forward to hooking up the pump and taking a nap at home and then just unhook. No driving to an infusion center on my Sunday and wasting the day!
I did have a hard time emotionally accepting this disease in the beginning. But now since my symptoms are almost normal and I am not affected by day to day symptoms I kind of have settled down and relaxed. I still get sad and angry from time to time when I flare up or have to get the infusion. But I try to stay positive and be grateful for the mild form of the disease I have. I know it can change in a blink of an eye and I can start to have a hard time with my CIDP. But for now I am blessed to have the disease under control. As for my husband, I understand what you are feeling. He tried to understand my disease when first diagnosed but really didn't and I did not get much sympathy or support from him. I guess because I looked and acted normal he thought I was ok. He could not begin to feel what I was feeling or know how it was affecting my health or mood. That made it very hard because I felt so alone at the time last year when first diagnosed. I kind of keep my disease to myself now because it seems people don't want to hear about it and don't understand. So when I am suffering, I suffer in silence.
I was diagnosed a year ago and I had my first IVIG treatment at the hospital, after that my neurologist set me up for an in home infusion with Duke Home Care and Hospice. The nurses are great and you get to be in a comfortable setting. I understand completely about how after having so many IV's that your veins are harder to stick and I would never recommend a port because the risk of infection is great. I had to get a temporary one because my veins were so hard to get. After that I bought a heating pad for my arms and whenever its time for my treatment I drink a ton of water and eat something hearty right before hand. It works! : ) I haven't had any issues since.
I am starting my first SQ Immunoglobin today. I guess you start with the SCIG one week after your last IVIG. Wish me luck! I hope my symptoms don't change with my CIDP going from IV to SQ administration of the Gamunux. Has anyone gone from IV to SQ and had changes in how you respond to the immoglobin? Any advise for getting the drug SQ instead of IV would be welcomed. I am very nervous for the change since I have been doing so well with the IV administration. But going forward for long-term I want to be more in control of when I have to get the immunoglobin and I don't want it going into my veins anymore. But I am very scared that making the switch is going to mess up things and make my CIDP worse or the side effects from the Gamunux worse.