Hi, I received my first dose of SCIG yesterday. I am trying it SQ instead of IV to see how it goes. I have CIDP. I was under the assumption that I would have less chance of side effects with SC instead of IV. But it was the othere way. With IV i don't get any side effects except a very weird 'foggy' feeling for the day. But I wanted the ease of doing it myself. It was a much bigger project than I imagined too. I had to hook up three needles to my tummy or another site on the body. The needles hurt more than I though. Not when I put them in, i used lidocane. But when the IG was running under the skin my skin got red and itchy and the areas ached for the whole infusion. The infusion took longer than I thought... almost 3 hours start to finish. I know it will be shorter once i do things quicker but still, longer than I thought. I will have to do this twice a week instead of once a month. Plus i got the annoying headache from the IG. It is not severe but enough of a headache that I am in pain. I still have it this morning. And VERY fatigued! I never get fatigued from IV. I also ache all over my body kind of like flu symptoms. Has anyone switched from IV to SC and experienced more side effects once on SC? I am going to finish out the month SC but if things stay like this then I guess I will switch back to IV. I can't imagine feeling like this every three days (then the bad feeling will last the day after only leaving me one day between infusions to feel good).
Hi. I had two courses of IVIG but these were stopped because of severe skin reactions on my feet and hands with skin virtually "dropping off" Has anyone had similar reactions? I did have the headaches, as have others and some level of fatigue but both these were manageable. Currently I am not receiving any further treatment.
I did SCIG for about a month and found that I don't like the subcutaneous route of administration. I have gone back to IVIG. The SCIG did work well at keeping my CIDP symptoms at bay. It is good to know that it does work and that if I HAD to go back to SQ in the future because of vein problems I could. But for now I felt that I was always infusing. I had to give myself two infusions weekley. On Sunday I would give myself 5 grams of Gamunex under the skin (10% solution so 50 mls) I had to do two sites since only 25 mls can go under in one site. But then again on Wednesday I did 7.5 grams of Gamunex (750 mls) - this day I had to do three pokes to get all the liquid under the skin. I found it to be cumbersome and messy! The pump was big and the needles hurt!!! A few times I got blood in the tube so I had to clamp off the needle and infuse half of the liquid to the sites and then restick for the remaining liquid! Each infusion took me about two hours from start (prep) to finish. So I was wasting 4 hours a week vs. 5 hours once a month with IV infusions. I also found that the Gamunex burned when going under the skin. This did get better as the month went on and the redness was less each time. But I got some local reactions that lasted days to weeks sometimes. Once I got a big, dark hematoma at the site. It still hurts when I touch it and it has been two weeks. I worry that I would have these hard areas all over my tummy and theighs after long-term administration of SQ. Three needles twice weekly adds up over years. Also I felt like my home became a hospital twice weekly. I had to lay everything out on the counter and keep everything steril. I had all this Gamunex in my refrigerator to keep it cold. I felt sicker because the disease was staring me in the face and I could not escape it in my own home! So for now I went back to IV and am happy. I now have my IVIG infused in-home rather then at a clinic. Only had it once and I think I will like it this way. You get this little black pack to put the IV bag in and you can actually walk around when hooked up to the IV. That was nice. But I still just layed down for most of the IVIG therapy as I get kind of tired. Has anyone else gone from IVIG to SCIG and then back to IVIG for CIDP treatment? I would like to know if you felt the same as I did.
can you please contact me via message,i am new and got mine from a vaccine to! having trouble getting diagnosed,■■■■■■■■■■■■■■■■■■■■■,just need some help with questions