Just curious if anyone here has tried the sub q version of immunoglobulin. I'm thinking it would make life a lot easier and something I could inject myself daily or whatever the protocol. No IV site clots to worry about, etc.
Please let me know if anyone has tried it and how was your experience.
Thanks,
Lisa in Mich
Hi Lisa,
I have not tried the Subcutaneous version but I did have difficulties with the IV's after the first few months. My veins began rejecting the IVIG and would turn hard as a pencil in my arm and the nurses that came to my home would have to change sites often. It was recommended that I get a Port, it is implanted under the skin and below my right clavical and it works like a charm. I have had it in now for over 18 months and have had no issues, whenever I am hospitalized they can access it for any IV's they need, no more stabbing my hands or forearms. Fantastic device, no maintenance other than flushing it with heparin after each use and the nurse does that. The brand I have is called a "PowerPort" and it just makes it easier for the medical community to access your circulatory system, chemo patients usually get them when they get treatment. I get IVIG infusions every week and I couldn't imagine getting stabbed in the back of my hands over and over.....this port has been a blessing.
I would always worry about the sub-Q thing being like my insulin, sometimes it likes to just sit there under the skin as a lump and doesn't disperse as it should. Don't know why but I would hate to see 8 grand as a lump under my skin doing nothing.
Dave
I hear you Dave! The last set of IVig treatment I received was the weekend before Christmas. The infusion RN had a hard time getting access to my vein in my forearm and two days later I was in the ER with a blood clot. Now my neurologist won't let me take IVig anymore saying "it's too risky"!! What the heck isn't risky with the treatments for this disease? I'm now on blood thinners (I take Coumadin every day) and what better time to receive IVig than when I'm on blood thinners? Hmmm....seems logical to me; but of course doctors are always leary of lawsuits. So I plan to get a 2nd opinion at U of M. I'm currently taking Imuran and Prednisone which I don't feel help much anymore. I've been on the two meds for about 9 months and not only have I gained a great deal of weight, my blood sugars have plummeted and I feel weaker; despite my neuro telling me I'm getting stronger and that I'm just depressed! Yes, I agree I am probably somewhat depressed calling in sick from treatment side effects, weakness, fatigue, worry about finances, etc. It's a lot to maneuver and nobody ever prepared me for what was to come with this diagnosis. I just expected once I was diagnosed and began IVig, I would start feeling better and would stay that way. I have gotten somewhat better, but I do feel like I have relapsed since I haven't had my IVig in a month. It was as if I had hit a brick wall and just couldn't move. I call this battle fatigue.
Thanks for the input
Lisa in Mich
Spelcheker said:
Hi Lisa,
I have not tried the Subcutaneous version but I did have difficulties with the IV's after the first few months. My veins began rejecting the IVIG and would turn hard as a pencil in my arm and the nurses that came to my home would have to change sites often. It was recommended that I get a Port, it is implanted under the skin and below my right clavical and it works like a charm. I have had it in now for over 18 months and have had no issues, whenever I am hospitalized they can access it for any IV's they need, no more stabbing my hands or forearms. Fantastic device, no maintenance other than flushing it with heparin after each use and the nurse does that. The brand I have is called a "PowerPort" and it just makes it easier for the medical community to access your circulatory system, chemo patients usually get them when they get treatment. I get IVIG infusions every week and I couldn't imagine getting stabbed in the back of my hands over and over.....this port has been a blessing.
I would always worry about the sub-Q thing being like my insulin, sometimes it likes to just sit there under the skin as a lump and doesn't disperse as it should. Don't know why but I would hate to see 8 grand as a lump under my skin doing nothing.
Dave
I was on SubQ for 6 months before my Stem Cell Transplant. There are pros and cons.
Pros: 95% reduction in side effects (ie headaches,nausea, fever), can do at home on your schedule, more even dosing -so highs and lows are not as great, expense might be better(no nursing or infusion centers)
Cons: it took 6 needles SubQ each week for my dose(if hands are affected I’m not sure coordination wise it could be done), dosing is each week instead of monthly( for me that was ok because IvIG was 4 days a month because of side effects), no nursing there for complications(although have 24/7 call line)
I preferred this way but I had severe side effects and sticking myself weekly did not bother me. Remember, I had an average dose and to deliver it in one treatment, it took a 6 needle catheter. Most people I have talked to do 4-6 needles. If you have any other questions, I would be glad to answer.
hi how do you feel now after your stemcell transplant it went away completely? cani speak with you on the phone since im so intrested in doing stemcell transplant? please?
Mashrub said:
I was on SubQ for 6 months before my Stem Cell Transplant. There are pros and cons.
Pros: 95% reduction in side effects (ie headaches,nausea, fever), can do at home on your schedule, more even dosing -so highs and lows are not as great, expense might be better(no nursing or infusion centers)
Cons: it took 6 needles SubQ each week for my dose(if hands are affected I'm not sure coordination wise it could be done), dosing is each week instead of monthly( for me that was ok because IvIG was 4 days a month because of side effects), no nursing there for complications(although have 24/7 call line)
I preferred this way but I had severe side effects and sticking myself weekly did not bother me. Remember, I had an average dose and to deliver it in one treatment, it took a 6 needle catheter. Most people I have talked to do 4-6 needles. If you have any other questions, I would be glad to answer.
Thank you mashrub!
I agree with you regarding the pros. I don't have a problem with sticking myself with a needle so no problem there. I like the idea of getting a continuous dose more frequently so fewer highs and lows when I can feel my body hit the proverbial wall when the Ig has run out of my system and have to drag myself around until the next infusion.
I asked my neurologist about the sub q and she said "I don't use it in my practice." So, she won't give me IVig because she is worried about the possibility of my getting another clot at the IV site and she won't prescribe the sub q version either. So right now I've been on Imuran and Prednisone and feel no difference. I'm exhausted and weak. Currently I'm on short term disability until hopefully I can find a neuro specialist who is not afraid to take risks. Afterall, don't I have a say in my care plan????
Lisa in Mich
freedmjos said:
hi how do you feel now after your stemcell transplant it went away completely? cani speak with you on the phone since im so intrested in doing stemcell transplant? please?
Mashrub said:I was on SubQ for 6 months before my Stem Cell Transplant. There are pros and cons.
Pros: 95% reduction in side effects (ie headaches,nausea, fever), can do at home on your schedule, more even dosing -so highs and lows are not as great, expense might be better(no nursing or infusion centers)
Cons: it took 6 needles SubQ each week for my dose(if hands are affected I'm not sure coordination wise it could be done), dosing is each week instead of monthly( for me that was ok because IvIG was 4 days a month because of side effects), no nursing there for complications(although have 24/7 call line)
I preferred this way but I had severe side effects and sticking myself weekly did not bother me. Remember, I had an average dose and to deliver it in one treatment, it took a 6 needle catheter. Most people I have talked to do 4-6 needles. If you have any other questions, I would be glad to answer.
Please seek out a second opinion. It took me 3 neuro’s until I found one who would listen about the whole picture. Never had blood clots so not sure about that. SubQ is absorbed much slower so I would think it would be safer? Hizentra is the name if you ask another Neuro. Like I said it was better by far for me.
I was on SQ for my CIDP for a few months. I see a doctor at the U of M and he was ok with trying SQ. I did not like giving myself the SQ and went back to IV after a few months. I am currently on 35 grams of IVIG every 21 days. When I went SQ I was having to stick myself twice weekly in order to get the 350 mls of Ig under my skin. It was time consuming and more painful to me. I had to use three needle each time and then I would have three lumps of fluid under the skin about the size of a fist that took a day or so to disperse. I sometimes got site reaction at the site of the sq needle. Nothing horrible, just some redness, itching and a hard lump. But I do not have a lot of body fat so finding adequate fat to stick the needles in was hard. I had to use my theighs and tummy most times. I was afraid of getting the hard knots all over my skin that I hear about from using SQ for long-term. I am lucky, the IV route works good for me. It takes about 3 hours to run the 35 grams in. I can only go up to 150 mls/hour max for rate because otherwise I get the darn headache. But I have in-home infusions and that is so much nicer than when I had to go to the infusion center at the U of M. But I have to admit, the infusion center at the U of M was not bad. Nurses were nice. They were open early in the mornings on weekends to accoumodate my schedule and you had semi-private rooms (separated with walls and sometimes curtins). So if i had to go back to a center I would go back there. The SQ administration was not for me but it might be good for others. I just felt more invaded by this disease because I was turning my kitchen into a mini hospital twice a week instead of once every three weeks. It made me think about being sick more often than I do with IVIG. So i went back to IVIG. I too hope to have the Stem Cell Transplant one day. But am awfully afraid of long-term effects. I hear it can increase your risk of cancer down the way. Is this true? Also my Neuro said I should wait on the SCT until I am sicker and can't tolerate the IVIG anymore. I am back and forth on that decision. I would like to be cured before I have permanent damage to my nerves but on the other hand I am afraid of the SCT and if it would make me sicker in the long run. Don't know that much about SCT I guess. Get in to see another Neurologist. SQ Ig is not currently rated to treat CIDP but many neurologists are willing to perscribe it off-label and give it a try. Some people just love the option to go SQ.
I am highly allergic to the IVIG, my neurologist is talking SCIG next. I am also interested in learning more about stem cell transplants.
I too am highly allergic to IVIG. Been doing plasmapheresis. What is SCIG? Doc also considering SubQ.
R. Johnson said:
I am highly allergic to the IVIG, my neurologist is talking SCIG next. I am also interested in learning more about stem cell transplants.
Mom currently waiting on the decision for an interview with Dr Burt to see if I qualify for the SCT and if my insurance pays for it.
Will let you know more soon.
*im
SCIg is subcutaneous form of IViG. Same medication. If you are truly allergic you would have same reaction. However, if you are just not tolerating it well(i.e. side effects) SubQ would help minimize them. SCT has truly changed my life for the better.