Has anyone had trouble with ivig wearing off after a week while having an infection or other type of inflammation at the same time? I had a medical device implanted last year that caused it to wear off too early. I had it removed and was ok. Recently I had a port implanted and the first infusion was ok, but last month wore off after a week. I also had a dental issue and a root canal. I’m hoping the infection from the tooth had something to do with this because I don’t want to get the port removed when I just got it. Has anything like this happened to anyone else?
Hi, I also get my IVIG every three weeks. The infusion before last never seemed to take affect. I felt like crap the entire time between infusions. I got another in fusion last Thursday and after sleeping for two full days I actually feel pretty good. Hands and feet are still numb but not much pain. Normally speaking, i start to really feel the need for another about a week prior. I’ve been getting Gammagard now for almost a year. I have to say that in all I’m doing much better than when first diagnosed.
Bobby
I have a chronic sinus infection that comes and goes. I notice that when the sinus infection is active the IVIG effect does "wear-off" faster than when I don't have the "infection. " Ask your Physician for the appropriate antibiotic to combat the interfering infections. My Physician prescribed CiPro for 10 days which did the job.
I too have a port and get a higher dosage of Immunogard than you are getting. I get almost immediate relief (within several hours) of the infusion for my CIDP.
Best regards and good luck,
I agree. When you have an infection or get sick, the IVIG wears off sooner. Some infections are just viruses which mean you should take an antibiotic.
I have had a port for 30 months. I have never contributed any of my downturns to it. Very possible the infection had something to do with you getting weaker. What kind of medical device are you referring to?
My last infusion is the first time that the IVIG wore off early. My doctor decreased my dose from my regular 35 grams of Gammunex to 30 gram. I didn't think just 5 grams less would make such a big deal. But only about 1 week after the infusion I am having bad symptoms. My legs hurt at night so much I can't sleep, besides pain I have a creepy-crawly sensation in my legs too. During the day my legs are heavy and tingling. I know it is because I got a smaller dose last time. We are going back up to 35 grams this Friday and I hope that everything evens out again at my normal dose. This is miserable. So proper dosage plays a very important role as to what effects you get from your infusion.
Thank you all for your replies, I appreciate it. My normal is 4 weeks, and I can feel it wear off a few days before, but never after one week minus the event from last year. I hope the tooth has something to do with it.
mine was every 4 wks. it was increased to every 3 wks because the symptoms were worse those 5-7 days before infusion. i had a relapse last fall & it's been increased to every 2 weeks. same amount - 65 g. i was also put back on prednisone - 20 mg per day. even now the symptoms worsen for a couple of days before ivig. the creepy crawlies on arms & legs; itchiness mostly on my back; legs weaker & general fatigue.
I was diagnosed before I had any major changes in my feet or hands. I have been on IVIG since around 2006 and my constant complaint has been the IVIG wears off a few days before I have my infusion. I have watched the pain and then the numbness slowly increase in my legs and hands to the point that it effects my ability to drive, I have change my treatment schedule from every three weeks to every week hoping there would be an improvement. There has not been. I was told that I was receiving the max amount . Since my condition is slowly getting worse, I don't feel that I am getting the right amount of IVIG. It is too late for me, because the numbness has existed too long to hope for any repair of the nerves. But I hope someone out there is listening and will increase the amount that is needed to stop the effects of this disease. There is a half life for all medications. I feel very good right after the infusion. Why cant that be extended by an increase in the amount? The use of the other medication has not been proven to be very effective. I do know that the use of IVIG in my case has delayed total .destruction of my nerves. Ethel
Ethel said:
I was diagnosed before I had any major changes in my feet or hands. I have been on IVIG since around 2006 and my constant complaint has been the IVIG wears off a few days before I have my infusion. I have watched the pain and then the numbness slowly increase in my legs and hands to the point that it effects my ability to drive, I have change my treatment schedule from every three weeks to every week hoping there would be an improvement. There has not been. I was told that I was receiving the max amount . Since my condition is slowly getting worse, I don't feel that I am getting the right amount of IVIG. It is too late for me, because the numbness has existed too long to hope for any repair of the nerves. But I hope someone out there is listening and will increase the amount that is needed to stop the effects of this disease. There is a half life for all medications. I feel very good right after the infusion. Why cant that be extended by an increase in the amount? The use of the other medication has not been proven to be very effective. I do know that the use of IVIG in my case has delayed total .destruction of my nerves. Ethel
I get 70mg every 3 weeks. Sometimes the relief is good for 15 or 16 days and sometimes only for a few days or a week. I stopped trying to figure it out. I know the IVIG has stopped the progression. I no longer have symptoms in my arms and hands, and have more strength in my feet and legs (also go to the gym 3x a week). From what I understand from my Dr. is that the IVIG doseage is in accordance with one's weight. I get the maximum in accordance with how mucy I weigh. For me, I just accept that there are variable changes in how I feel after an infusion. As long as I don't get any worse or have additional damage, I'm satisfied.
Hi Ethel, Have you ever thought about going to subcutaneous IG? That way you are getting a little bit of IG more often. You administer it to yourself at home under the skin instead of IV. You can give it to yourself in smaller doses more often. I did it for a summer and gave myself a SubQ dose twice weekly. This way there are not so many highs and lows... the IG stays more constant in your system. There is a 20% IG solution called Hizentra (here is the web site) www.hizentra.com.
I didn't keep doing SCIG for more than a few months because I found it more invasive of my time. I get good results (or use to) with the IV dose every 3-4 weeks. But I know that if I start to have difficulty with IVIG I wont' think twice about returning to SCIG in the future.
I used Gammunex that is only 10% so I had to give myself more of the IG under my skin. I did not want to change my brand to Hizentra because I was doing so good on Gammunex. You should discuss trying SCIG with your neurologist. It is off label for CIDP but a lot of neurologists will prescribe it this way. Good luck.
Ethel said:
I was diagnosed before I had any major changes in my feet or hands. I have been on IVIG since around 2006 and my constant complaint has been the IVIG wears off a few days before I have my infusion. I have watched the pain and then the numbness slowly increase in my legs and hands to the point that it effects my ability to drive, I have change my treatment schedule from every three weeks to every week hoping there would be an improvement. There has not been. I was told that I was receiving the max amount . Since my condition is slowly getting worse, I don't feel that I am getting the right amount of IVIG. It is too late for me, because the numbness has existed too long to hope for any repair of the nerves. But I hope someone out there is listening and will increase the amount that is needed to stop the effects of this disease. There is a half life for all medications. I feel very good right after the infusion. Why cant that be extended by an increase in the amount? The use of the other medication has not been proven to be very effective. I do know that the use of IVIG in my case has delayed total .destruction of my nerves. Ethel
chirpybirdy said:
Hi Ethel, Have you ever thought about going to subcutaneous IG? That way you are getting a little bit of IG more often. You administer it to yourself at home under the skin instead of IV. You can give it to yourself in smaller doses more often. I did it for a summer and gave myself a SubQ dose twice weekly. This way there are not so many highs and lows... the IG stays more constant in your system. There is a 20% IG solution called Hizentra (here is the web site) www.hizentra.com.
I didn't keep doing SCIG for more than a few months because I found it more invasive of my time. I get good results (or use to) with the IV dose every 3-4 weeks. But I know that if I start to have difficulty with IVIG I wont' think twice about returning to SCIG in the future.
I used Gammunex that is only 10% so I had to give myself more of the IG under my skin. I did not want to change my brand to Hizentra because I was doing so good on Gammunex. You should discuss trying SCIG with your neurologist. It is off label for CIDP but a lot of neurologists will prescribe it this way. Good luck.
Ethel said:I was diagnosed before I had any major changes in my feet or hands. I have been on IVIG since around 2006 and my constant complaint has been the IVIG wears off a few days before I have my infusion. I have watched the pain and then the numbness slowly increase in my legs and hands to the point that it effects my ability to drive, I have change my treatment schedule from every three weeks to every week hoping there would be an improvement. There has not been. I was told that I was receiving the max amount . Since my condition is slowly getting worse, I don't feel that I am getting the right amount of IVIG. It is too late for me, because the numbness has existed too long to hope for any repair of the nerves. But I hope someone out there is listening and will increase the amount that is needed to stop the effects of this disease. There is a half life for all medications. I feel very good right after the infusion. Why cant that be extended by an increase in the amount? The use of the other medication has not been proven to be very effective. I do know that the use of IVIG in my case has delayed total .destruction of my nerves. Ethel
forgot about that one. SubQ was also turned down. My age was against me.
chirpybirdy said:
Hi Ethel, Have you ever thought about going to subcutaneous IG? That way you are getting a little bit of IG more often. You administer it to yourself at home under the skin instead of IV. You can give it to yourself in smaller doses more often. I did it for a summer and gave myself a SubQ dose twice weekly. This way there are not so many highs and lows... the IG stays more constant in your system. There is a 20% IG solution called Hizentra (here is the web site) www.hizentra.com.
I didn't keep doing SCIG for more than a few months because I found it more invasive of my time. I get good results (or use to) with the IV dose every 3-4 weeks. But I know that if I start to have difficulty with IVIG I wont' think twice about returning to SCIG in the future.
I used Gammunex that is only 10% so I had to give myself more of the IG under my skin. I did not want to change my brand to Hizentra because I was doing so good on Gammunex. You should discuss trying SCIG with your neurologist. It is off label for CIDP but a lot of neurologists will prescribe it this way. Good luck.
Ethel said:I was diagnosed before I had any major changes in my feet or hands. I have been on IVIG since around 2006 and my constant complaint has been the IVIG wears off a day before I have my infusion. I have watched the pain and then the numbness slowly increase in my legs and hands to the point that it effects my ability to drive, I have changed my treatment schedule from every three weeks to every week hoping there would be an improvement. There has not been. I was told that I was receiving the max amount . Since my condition is slowly getting worse, I don't feel that I am getting the right amount of IVIG. It is too late for me, because the numbness has existed too long to hope for any repair of the nerves. But I hope someone out there is listening and will increase the amount that is needed to stop the effects of this disease. There is a half life for all medications. I feel very good right after the infusion. Why cant that be extended by an increase in the amount? The use of the other medication has not been proven to be very effective. I do know that the use of IVIG in my case has delayed total .destruction of my nerves. Ethel
I guess that I paid attention to reports that trial amounts are based on male physical conditions and not females. IN one reported case. it was reported that for over I believe 10 years, women were receiving the amount that was reccomended for males and not females .Even though the pharmaceutical companies knew this and continued the wrong doses for women. I also know that pharmaceutical companies do not always inform the patients of all the problems that they encounter if the problem is not "remarkable". I have had pretty regular results from the use of IVIG. The day before I receive the infusion, I feel more weakness and muscle fatigue. I can feel the pain progressing up my legs and hands. Over the years, the numbness and pain has progress from just my feet to now above my knees. The day I receive the infusion, I start to feel stronger. But regularly as clockwork on the sixth day, there is a change. The only exception to this schedule has been when one of my other "conditions" have cause a problem and thrown me off schedule. I am not on a trial study but I think that my record should be examined to find a way to treat others who feel that they are not getting enough IVIG. Because I firmly believe that a small increase would make a difference.
Strange, that you brought this topic up. I have been receiving infusions every three weeks since August 2014. And I was doing well with them. But recently since my last infusion I had caught a bronchial infection, and needed to take antibiotics as well as medication for it. So it felt that my last infusion did not last as long. My last week prior to my next infusion I became extremely fatigued, as well as having problems walking also more substantial numbness in the hands and feet. I will be checking with my neurologist next week on this. One day I slept almost 15 hours straight without any type of medication which is extremely rare for me but I was totally exhausted. Could not even get out of bed.
Billwinters said:
Strange, that you brought this topic up. I have been receiving infusions every three weeks since August 2014. And I was doing well with them. But recently since my last infusion I had caught a bronchial infection, and needed to take antibiotics as well as medication for it. So it felt that my last infusion did not last as long. My last week prior to my next infusion I became extremely fatigued, as well as having problems walking also more substantial numbness in the hands and feet. I will be checking with my neurologist next week on this. One day I slept almost 15 hours straight without any type of medication which is extremely rare for me but I was totally exhausted. Could not even get out of bed.
Been there done that also. Total exhaustion when my body experiences a change in my ability to fight an infection. The answer to this condition was the next IVIG infusion session. Then everything was back to normal. Ethel
I wanted to post an update…I have had 2 more infusions that have continued to act funny. I went to the dentist today and still have an infection in one tooth even though a root canal was done. I’ve started antibiotics so we will see if that clears it up. I have a feeling the underlying infection is playing a role in this, so once that clears and I have another infusion I’ll be able to tell better. Thanks again to everyone for your responses.
Before being diagnosed with CIDP and getting IVIG, I was sick from October through March with only a few days of health between illnesses. After getting IVIG every 2 wks, I haven't had so much as a sniffle.
Hi Ethel,
I just read your post and wanted to let you know that I felt like I wasn’t getting enough IVIG either. I recently switched doctors. The new doctor has recommende 2 grams of IVIG per every kilogram of body weight. I Was receiving about half that amount previously. The brand I get is a 10% solution. I started to do better almost immediately after I received a higher dose of IVIG.
Laura
Maddy said:
Ethel said:I was diagnosed before I had any major changes in my feet or hands. I have been on IVIG since around 2006 and my constant complaint has been the IVIG wears off a few days before I have my infusion. I have watched the pain and then the numbness slowly increase in my legs and hands to the point that it effects my ability to drive, I have change my treatment schedule from every three weeks to every week hoping there would be an improvement. There has not been. I was told that I was receiving the max amount . Since my condition is slowly getting worse, I don’t feel that I am getting the right amount of IVIG. It is too late for me, because the numbness has existed too long to hope for any repair of the nerves. But I hope someone out there is listening and will increase the amount that is needed to stop the effects of this disease. There is a half life for all medications. I feel very good right after the infusion. Why cant that be extended by an increase in the amount? The use of the other medication has not been proven to be very effective. I do know that the use of IVIG in my case has delayed total .destruction of my nerves. Ethel
It is amazing how the dosage can make such a big difference. I was getting 35 grams of 5% solution every 4 weeks and doing great. My doctor got it in his head that I should try to slowly wean my dose down so he reduced me to 30 grams every 4 week. You would not think that the tiny 5 grams lower would make a difference but it did. Within just a few days of my infusion I knew that it was not good. My legs were heavy, I had horrible tingling and zaps to my feet at night keeping me awake, fatigue, etc. I was kind of shocked that such a tiny amount make such a big difference in my quality of life. I am back up to 35 grams and doing great again. I won't try that again!