I’m sitting in Knoxville getting my IVIG at an infusion center. Previously I had to travel 200 mi. To Vanderbilt. What are your experiences of having to drive to the clinic vs having the “clinic” come to you in your home? Do you feel it’s as safe? Do us tore anything at the house or do they bring it all with them? I have little to no side effects here in the clinic. Let me hear what your experiences are. Geeps
Hi Geeps. I love getting ivig at home. I had more than 100 infusions at home and I feel very safe. I have the same nurse every time. It is easy for them to adjust the speed for the infusion if you feel a headache coming on. But mostly my time hasn't changed because we know the best rate.
They usually messenger ivig the night before and I keep it refrigerated. If there are any supplies they are included. I have many backup supplies I keep in my closet. The iv machine stays too. They replace the machine every few months for calibration. It comes with the ivig when they do. It is very convenient. The driver will arrange his schedule to yours, as does the nurse.
I can nap, read, watch tv and even cook during the infusion. The nurse monitors blood pressure and temperature through out the infusion. I wouldn't want it any other way.
TY mabes, it sounds like U have really acclimated to the treatment and the procedure. Have U ever deliberately extended the intervals between treatments? Your info really helps! Geeps in TN
mabes said:
Hi Geeps. I love getting ivig at home. I had more than 100 infusions at home and I feel very safe. I have the same nurse every time. It is easy for them to adjust the speed for the infusion if you feel a headache coming on. But mostly my time hasn’t changed because we know the best rate.
They usually messenger ivig the night before and I keep it refrigerated. If there are any supplies they are included. I have many backup supplies I keep in my closet. The iv machine stays too. They replace the machine every few months for calibration. It comes with the ivig when they do. It is very convenient. The driver will arrange his schedule to yours, as does the nurse.
I can nap, read, watch tv and even cook during the infusion. The nurse monitors blood pressure and temperature through out the infusion. I wouldn’t want it any other way.
Yes, I tried to extend the treatments from the beginning. Weekly ig infusions were difficult. I was not able to sustain extensions the first 3 years and had to get off prednisone. I was desperate and started fixing deficiencies. I was able to go 3 weeks between infusions. I went on a low oxalate diet and started taking antioxidants.. I am at 4 weeks now. I have made more changes in diet and feel even better. I have gone 5 weeks between infusions on occasion with good results. I still relapse but have not needed to increase intervals. I am trying to figure out the triggers. I have relapse and remitting variant of cidp, MADSAM. Trial and error with diet, supplements and yoga have allowed me to sustain longer intervals, and improved the quality of my life.
Geeps said:.
TY mabes, it sounds like U have really acclimated to the treatment and the procedure. Have U ever deliberately extended the intervals between treatments? Your info really helps! Geeps in TN
mabes said:Hi Geeps. I love getting ivig at home. I had more than 100 infusions at home and I feel very safe. I have the same nurse every time. It is easy for them to adjust the speed for the infusion if you feel a headache coming on. But mostly my time hasn't changed because we know the best rate.
They usually messenger ivig the night before and I keep it refrigerated. If there are any supplies they are included. I have many backup supplies I keep in my closet. The iv machine stays too. They replace the machine every few months for calibration. It comes with the ivig when they do. It is very convenient. The driver will arrange his schedule to yours, as does the nurse.
I can nap, read, watch tv and even cook during the infusion. The nurse monitors blood pressure and temperature through out the infusion. I wouldn't want it any other way.
My CIDP is a comb. of MADSAM and acquired autoimmune response to Hep C virus which has been active since 1979. A long time 4 those viri to hang @. Let me know what you find in triggers bec all I've found is stress ( do meditation -- simple forms) and just doing stupid things that predispose to recurrences. No cure 4 stupid, right?
mabes said:
Yes, I tried to extend the treatments from the beginning. Weekly ig infusions were difficult. I was not able to sustain extensions the first 3 years and had to get off prednisone. I was desperate and started fixing deficiencies. I was able to go 3 weeks between infusions. I went on a low oxalate diet and started taking antioxidants.. I am at 4 weeks now. I have made more changes in diet and feel even better. I have gone 5 weeks between infusions on occasion with good results. I still relapse but have not needed to increase intervals. I am trying to figure out the triggers. I have relapse and remitting variant of cidp, MADSAM. Trial and error with diet, supplements and yoga have allowed me to sustain longer intervals, and improved the quality of my life.
Geeps said:.TY mabes, it sounds like U have really acclimated to the treatment and the procedure. Have U ever deliberately extended the intervals between treatments? Your info really helps! Geeps in TN
mabes said:Hi Geeps. I love getting ivig at home. I had more than 100 infusions at home and I feel very safe. I have the same nurse every time. It is easy for them to adjust the speed for the infusion if you feel a headache coming on. But mostly my time hasn't changed because we know the best rate.
They usually messenger ivig the night before and I keep it refrigerated. If there are any supplies they are included. I have many backup supplies I keep in my closet. The iv machine stays too. They replace the machine every few months for calibration. It comes with the ivig when they do. It is very convenient. The driver will arrange his schedule to yours, as does the nurse.
I can nap, read, watch tv and even cook during the infusion. The nurse monitors blood pressure and temperature through out the infusion. I wouldn't want it any other way.
Stress is definitely a trigger for me too. I will let you know if I figure something out.
I hope you are starting to feel stronger. Take care.
I actually have my treatments at work. The IV company comes and starts the infusion and I disconnect. Full disclosure, I am an RN, so the thought doesnt scare me. I have a desk job and it has allowed me not to miss work. I have been fortunate not to have side effects or I wouldnt be as comfortable. My treatments were every 3 weeks, but I recently had a relapse that was significant (falls, unable to use hands,etc) and now have added steriod and increasing to every 2 weeks to see what happens. I am only 3 months into my diagnosis.
WOW, that’s great. I too am a medical personnel so I get a lot of perks too but IVIG at work is phenomenal. My last of this series is tomorrow then in. Another month. Good luck with the relapse meaning I hope it is short and the added steroids help a lot.
Razorback said:
I actually have my treatments at work. The IV company comes and starts the infusion and I disconnect. Full disclosure, I am an RN, so the thought doesnt scare me. I have a desk job and it has allowed me not to miss work. I have been fortunate not to have side effects or I wouldnt be as comfortable. My treatments were every 3 weeks, but I recently had a relapse that was significant (falls, unable to use hands,etc) and now have added steriod and increasing to every 2 weeks to see what happens. I am only 3 months into my diagnosis.
Is stress a trigger for most people? I guess I have missed that info, but am new to researching everything.
Could we start a new thread about stress? I would like to gain a deeper understanding of how stress plays into the immune system response. Even now as my body has healed to a near normal I am experiencing "post" stress which I am working hard to overcome.
Razorback said:
Is stress a trigger for most people? I guess I have missed that info, but am new to researching everything.
I sent a long discussion re: stress but it disappeared. Maybe I hit the wrong button? I’ll start another thread about stress. Why does it cause so many serious particularly for neurological patients like MADSAM, CIDP, GBS (AIDP) etc. Look for it as soon as I figure out how to start a new thread !!!. I’ll start with a “primer” on the mechanism of action of stress on the hormone Cortisol.
Ps getting my third in the series IVIG right now. I’m off 4now. Keep those "cards and letters"coming. We learn a lot this way. Geeps
So frustrating when that happens. There is a recovery button, which works sometimes and not others. If you go back to your post, the recovery button may appear and if you click on it everything you lost will reappear. Is there a moderator who could explain this feature? Thank you.
How reliable are your in home infusions? Do the supplies always arrive on time? Does the nurse always come as scheduled? I receive my IVIG at a nearby hospital and in the past 18 months (I have treatments monthly) I have had three times when they did not have IvG available, even though I am scheduled a month in advance, and had to postpone my treatment. This is getting frustrating.
mabes said:
Hi Geeps. I love getting ivig at home. I had more than 100 infusions at home and I feel very safe. I have the same nurse every time. It is easy for them to adjust the speed for the infusion if you feel a headache coming on. But mostly my time hasn’t changed because we know the best rate.
They usually messenger ivig the night before and I keep it refrigerated. If there are any supplies they are included. I have many backup supplies I keep in my closet. The iv machine stays too. They replace the machine every few months for calibration. It comes with the ivig when they do. It is very convenient. The driver will arrange his schedule to yours, as does the nurse.
I can nap, read, watch tv and even cook during the infusion. The nurse monitors blood pressure and temperature through out the infusion. I wouldn’t want it any other way.
I have home infusions provided by Walgreens. The case manager calls me to set up delivery time based on my schedule. Often it is after 7pm. They do an excellent job and are on time. I usually arrange scheduling with my nurse, at the time of my infusion, for the next visit. She tells the case manager so he knows when to schedule the delivery of the supplies. I have asked my nurse to call if she's going to be late, otherwise I expect her to be on time. I do have back-up nurses for when the usual nurse is on vacation or sick. I am on Carimune, an uncommon type of ig and sometimes hard to get, from what I have learned. I have never missed a dose because it wasn't available. Walgreens is well managed.
If I experienced what you have I would call my neuro first and explain. Your neuro may have a lot of influence and change things around quickly. My neuro is who set up the home infusions with insurance. Also, a patient advocacy within the hospital may help if you decide to stay with hospital infusions.
This illness is hard enough, we don't need anyone making it unnecessarily harder.
Rfisher7381 said:
How reliable are your in home infusions? Do the supplies always arrive on time? Does the nurse always come as scheduled? I receive my IVIG at a nearby hospital and in the past 18 months (I have treatments monthly) I have had three times when they did not have IvG available, even though I am scheduled a month in advance, and had to postpone my treatment. This is getting frustrating.
mabes said:Hi Geeps. I love getting ivig at home. I had more than 100 infusions at home and I feel very safe. I have the same nurse every time. It is easy for them to adjust the speed for the infusion if you feel a headache coming on. But mostly my time hasn't changed because we know the best rate.
They usually messenger ivig the night before and I keep it refrigerated. If there are any supplies they are included. I have many backup supplies I keep in my closet. The iv machine stays too. They replace the machine every few months for calibration. It comes with the ivig when they do. It is very convenient. The driver will arrange his schedule to yours, as does the nurse.
I can nap, read, watch tv and even cook during the infusion. The nurse monitors blood pressure and temperature through out the infusion. I wouldn't want it any other way.
Thanks mabes (how do you pronounce mabes?) and Rfisher7381. It must be crazy not knowing whether you will get your ig on time or at all. Rfisher, I'd switch in a heartbeat if possible (insurance?). mabes has it all under control with some good advice for Rfisher too. mabes, did your insurance provide you with your case manager and nurse as well as recommend Walgreens. With me it's me and the Neuro. I had to pick the iv facility which wasn't too hard using the internet. Rfisher, see my recent post on "Stress" to keep on an even keel. Also some real good ideas there from others!
Actually, it's short for Mabel. Mabel is the puppy we got to relieve the stress my sons felt when I got sick. She has brought so much happiness to our family.
My neurologists asked which infusion company I wanted. There was no way to know which would be better. I had one company that was bought by another company which was ultimately bought by Walgreens. All the infusion companies provide you with their private case managers and nurses. The neuro writes the script which goes to insurance first and gets approved. Then the infusion company will call you to set up your first infusion. The script gets approved regularly. You may be set up 6 treatments initially to see if the ig works. I have a standing of 12 monthly infusions at this time that are approved of by insurance.
I have a private infusion center but no case manager or regular nurse contact. I'll contact them to see why. Again, thanks. Ps I adore the puppy story. I assume it worked.