May 22, 2020 at 2:24 pm
Hi Jim, yes not far from me for sure. I am down in that area quite a bit in the summer. Appreciate as well as the posts and time you put into this site. It is very helpful!May 17, 2020 at 2:17 pm
Hi Pete, just saw this older post. Hopefully you got your second opinion and progress is being made.
I am from Horseshoe Valley, ON so not far from you. I was getting treatment in Buffalo until I got into Toronto General which has one of the best programs in Canada for CIDP/GBS.
I was on IVIG and am now on SCIG. I am not having the success I would like however my doctor is very knowledgeable so am hoping to make progress soon.May 16, 2020 at 8:50 am
Hi all, I just noticed this post as well. I posted s similar one under the CIDP section. I move over to SCIG (7 weeks ago) and I do not seem to be getting the same benefits from it. One issue is that I felt just before I moved over from IVIG, that my symptoms were already worsening so hard to tell if it is the SCIG or it was already happening.
All said, the process is easy and I am fortunate at least that I get no side effects. I have heard good things from most that use it as well so am hoping I can get back to my new normal and proceed with SCIG…
An IVIG boost on top of the SCIG may be the next steps from my Neurologist as currently nothing seems to be working.April 19, 2020 at 9:24 am
While I have not been doing this battle for as long as some I certainly share the frustration.
I was diagnosed with CIDP in November 2019. I had 4 months of IVIG and now am on SCIG (mosly as it is easier with Covid 19 right now to get treatment).
While the symptoms had started to subside some the first few months, they seem to be getting worse again. Numbness especially and some increase in the “lightening bolts”. I look after myself well for the most part. I eat very well, workout as best I can 4 days a week.
With the pain and frustration, my one bad habit is I do enjoy 2-3 drinks at night to help relax me. I am thinking this is likely not a good thing and might possibly be contributing to my increased symptoms as nerves wont heal? Any similar experience here from anyone?
While I do not want to go on Prednisone due to side effects, it seems like many have had success with it. I am going to cut out the one bad habit I have now for a period of time and see if that helps. Failing that, I guess prednisone is my next option.. A long haul ahead I fear.March 3, 2020 at 4:59 pm
Great feedback and thank you although I am sorry you could not continue with them.
I am curious to see if I also get a rash as I actually have one I am trying to get rid of one now after having been in the sun in Aruba and am just not sure if it was the IVIG or the gabapentin. We have stopped the Gabapentin and am sure hoping it is the culprit as hoping it isn’t the IVIG.March 3, 2020 at 6:34 am
Thanks Jim for the links..
Have you heard about SCIG being done (instead of IVIG) as it has been offered to me in Canada and I have heard is as effective as the IVIG but of course the benefit of being self administered in the home and less invasive.
RobMarch 1, 2020 at 8:31 pm
Thank you for your feedback and also happy that the progression for you was stopped.
I understand the individuality of this disorder and I also appreciate forums like this which allow to to share experiences we have gone through.
RobFebruary 23, 2020 at 11:23 am
I just found a posting online where it refers to “Photosensitive Lichenoid Eruption caused by Gabapentin” which sounds like it may be the cause. Images of the rash are also consistent with what I am exhibiting.
RobJanuary 1, 2020 at 9:50 am
Thank you for sharing your story and the chronological sequence of events. It is inspiring to hear how well you have progressed over the past 18 months!
As we have heard from various others on other posts, it is frustrating in that the treatment and journey can be so different for many. Some have stated that IVIG on its own has done the trick and many others have used prednisone etc.
I have been asked to go in for my first maintenance dose of IVIG tomorrow. (75 g of Gamunex over 3 days). I have seen no change in progression of symptoms since my loading does. They want to try this what they refer to as less invasive treatment first after which they said they would look at other options including corticosteroid.
I like facts and the piece I find find frustrating is that there do not seem to be many statistics about % of success using different methods due to the uniqueness of each persons disease.
I will try this next three day treatment after which feel if not successful, will need to look at other options quickly including potential second opinions on the path forward.December 28, 2019 at 8:15 am
Great feedback all to my queries so thank you for that.
I have now spoken to a second Neurologist yesterday who agreed that going to Prednisone with some type of immunosuppressant etc. was the next option. He said that in his experience, about 60% of patients will see a benefit form getting the IVIG on its own and those that do not, often benefit by receiving another high does of IVIG (like another loading does). His comment was that these are the less invasive options and that if that did not work,they then move onto the other options of steroids and immunosuppressants. They want to get me in starting within the next week to receive the next 5 day dose of Gamunex. (2mg/kg or in my case about 155 mg over 5 days.)
I am also on 600mg of Gabapentine now and was advised to increase this to 900mg/ day.December 27, 2019 at 8:19 am
Given all the input from my original post, I am curious as to how many people are actually on Prednisone or some other steroid in addition to the IVIG? I spoke recently to my Neurologist and she said “we don’t want to be using Prednisone to treat CIDP” which seems to contradict much of what I am hearing from others?
My current concern is also that after almost 4 weeks since my Gamunex loading does, I am continuing to deteriorate in terms of numbness and pain in feet and walking is getting difficult. Ha anyone else had this experience and if so what were the next steps you took?
RobDecember 16, 2019 at 1:42 pm
Thank you for sharing.It sounds like a very similar start to myself although the progression has not stopped on Day 5 post treatment. Fingers crossed… I see my Neurologist for a follow up in two weeks. This has also given me some additional questions for my Neurologist.December 16, 2019 at 10:55 am
Thank you for sharing. I am newly diagnosed so will defer the feedback on the use of IVIG to others more qualified. I find it very encouraging that you can live a normal life style albeit with infusion every 5-6 weeks. I was also diagnosed early and am curious how bad did your symptoms get and how long until you found relief with the IVIG and what is your dosage?
I hear you on the cost piece as well. I am 55 years old as well as likely heading into the same situation you describe from a financial concern perspective.December 16, 2019 at 10:50 am
Thanks Rob, great to hear Gamunex provided relief for you Ron. This is encouraging.
I asked my doctor about diving and was told no way, given pressure changes is too risky. Also getting my compression stockings for the plane to be safe. Am hoping I can get around ok walking is my biggest concern at this point.December 16, 2019 at 7:59 am
Good feedback for me as I was also unaware of the wide use of Prednisone and Cellcept. I am also only on the Gamunex IVIG at this point although am meeting with my Doctor in two weeks to discuss next steps.I am using gabapentin as well although not sure it is helping at all for nerve pain.
I like facts and as you said want to educate myself but there seem to be so many variables it is a challenge at this point. My numbness in my toes and feet is getting worse by the day and the lightening storm in my legs at night makes sleep very difficult.
I actually am supposed to get on a plane on Thursday to the Caribbean for a first ever long planned Christmas vacation with my kids and am seriously wondering if I can do it now. Doctors say to go and rest up but at this rate not sure how bad it might get in the next 10 days. (Sorry just venting now…)
Will speak to Doctor today and hopefully get something else to help with symptoms but not sure if that is realistic thinking at this point.