Heidi

Your Replies

  • January 8, 2018 at 5:11 pm

    Hi everyone and welcome Sundayrush!!
    Sorry I was away from email for a few days…after reading all the great information that everyone wrote I wanted to add a few thought/comments/answers to questions. Since I was diagnosed with anti-MAG over two years ago, my neurologist has warned me against a flu shot due to possible triggering of Guillaine-Barre. I had only sporadically gotten it in previous years so I’m not upset about skipping it. I don’t know of any data however that says that folks with CIDP or anti-MAG are more susceptible to GB after inoculation so if you feel you should get it to protect your health, I’d go ahead.

    I also feel that there is some muscle weakness associated with this disease even though I’ve read and been told that there shouldn’t be marked weakness with anti-MAG. I don’t know if anti-MAG contributes to muscle weakness or if muscle weakness is a result of anti-MAG but I definitely felt decreased strength. BTW…that seems to have improved a bit on Rituximab. Especially going up/down stairs. I have not had any stress fractures but have had two other fractures due to falls due to my condition (ankle and fibula)-that’s when I started using a cane. I do feel there is something strange that happens in our ligaments-could be a weakening or maybe sensory related that just causes ligaments to feel like rubber bands!

    Also, of interest, I am from the Midwest originally (live near Boston now) and have a relative at Mayo. I went there for a full work-up after my initial dx and they confirmed my dx of anti-MAG and their recommendation was Rituximab. I also went to Northwestern (Chicago) where Dr. Burt and Dr. Allen conduct stem cell transplants for people with Multiple Sclerosis and CIDP (I had run into a local person with CIDP in Boston who had good results with a stem cell transplant-she encouraged me to go). They did a thorough assessment and told me that yes, I have anti-MAG (no surprise there) but they also said that they have not had positive results from their stem cell transplant protocol for anti-MAG (they had only done a handful of people with anti-MAG and no one got better). They aren’t sure why it wouldn’t work but it doesn’t at least with how they are doing it. I was grateful for their honesty as it’s a rigorous protocol involving a significant health risk.

    Sorry for the length of this post but I do appreciate everyone else’s experiences and hope that I can contribute to the group with what I’ve experienced so far!

    Take care everyone,
    Heidi

    January 4, 2018 at 2:16 pm

    Hi Peter (and group),
    I had my last infusion in August 2017….I had my first infusion in February of 2017. They are spreading them out 6 months apart. I would say that your source may be correct in terms of taking about 9 months to notice a change. It seems to me that I felt improvement (slightly better balance, less reliance on cane all the time, more strength in my legs) around October 2017 which would be about 8 months after my first treatment in Aug. One thing that I’ve had difficulty adjusting to is the slow pace of noticing change. My dr. appts. are about 3 to 4 months apart which feels like a lifetime when you live with it every day. I did see Dr. Kenneth Gorson this fall who is associated with St. Elizabeth’s Hospital out here in the Boston area. He suggested a more compressed Rituximab dosage (every 3 months) so I’m pondering that. My next Rituximab treatment should be this February. I’m not sure if I will get approved for a more compressed schedule but will let the group know how it goes either way. Stay warm everyone!
    Heidi

    January 1, 2018 at 6:12 pm

    Hi Peter,
    I also fell a number of times due to catching my toe due to foot drop. I started using a cane and picking my feet up fairly high which used a lot of energy. I had a simple over the counter brace I got on Amazon to help on my most involved side but still needed to walk very carefully and thoughtfully. My ankles do feel a bit more “wobbly” just as you describe and if I walk on uneven surfaces I really need to stay focused on my feet. The orthotic brace I got is made by a company called Ottobock and is called “WalkOn flex” model 28U22. It does help with the foot drop quite a bit and walking is less taxing. It doesn’t necessarily give me more ankle support but my ankles actually seem a bit more stable (perhaps a good benefit of having Rituximab treatment?). In any event, I was able to try a few different types at my orthotists clinic and these were the lightest and most comfortable. I hope you could try some different types and find one that works for you.
    Take care!
    Heidi

    December 29, 2017 at 1:07 pm

    Oops! Sorry Ila, forgot to answer your question about plasma exchange. I’ve asked a number of neurologists that same question. Here’s what I get as an answer…plasma exchange may help in the very short run but it is just filtering out your excess antibodies temporarily and is not a very long term solution. Plus, there is a fair risk due to infection as you are literally having your blood taken out, spun and processed and returned (all through large catheters). That said, none of us are the same and our doctors all have slightly differing philosophies. If you have been encouraged to give it a try or want to try it for your own peace of mind then I’d give it a go. Take care!
    Heidi

    December 29, 2017 at 1:01 pm

    Hi everyone!
    My B12 was in the normal range as well so at this point I only take a multi-vitamin, fish oil and calcium. I don’t do anything in excess right now. I recently got AFO (ankle-foot orthotics) and I am pleasantly surprised by the help they have given me. I do have a bit of “foot drop” on both sides and use a cane. I had an over the counter foot brace but my Dr. urged me to give these a try. I had stalled a bit because I didn’t want anything more attached to my feet to get in the way of what little sensation I have. They are very lightweight and don’t need custom molding so are less expensive. They give me more confidence when walking and at times I’ve left my cane for short travel. Just thought I’d share that in case any of you are in the same situation.
    Happy New Year to everyone!
    Heidi

    December 27, 2017 at 5:46 pm

    Hi Peter,
    I’m glad you found this forum and thanks so much for sharing your information. I had no problems with the IVIG treatments I had (a series of infusions for 6 months). They didn’t seem to help but then again, who knows for sure as it could have slowed progression a bit. I believe my insurance dictated that I needed to do IVIG first before jumping into Rituximab. I’m thinking that there may have been a need to prove a cheaper alternative either effective or not before going to the more expensive Rituximab. BTW….the very first line of treatment I had was high dose steroids which didn’t do anything either. I’ve also been to the Mayo Clinic and Rituximab was their suggestion. I have had two treatments with Rituximab-each 6 months apart. No bad reactions at all and I do feel that it slowed the progression and may have given me a slight improvement. So hard to objectively measure small changes with something like this. You are right that there are so few of us that the most effective treatment hasn’t really been settled on yet. I am also eager to hear when Polyneuron starts trials as I’d be more than willing to sign up! Again, thanks for letting us know your story and best of luck with moving forward.
    Heidi

    December 20, 2017 at 8:55 pm

    Hi Ila,
    Your overview of anti-MAG treatment was helpful. I didn’t notice any improvement on IVIG either and I did it for 6 months. It makes sense that the sooner the antibodies can be stabilized or decreased the better. I haven’t tried vibration as a treatment and in what I have read it hasn’t been mentioned. Did you find some information about it’s efficacy? Thanks for your information.
    Heidi

    December 16, 2017 at 11:48 am

    Hi Ila,
    I’m not sure if your question about “slowly progressing” was for me but I’ll answer. Unlike Cats, my disease seemed to come out of the blue with minor tingling in hands and feet progressing to more numbness and tingling and then affecting my balance and mobility. This all took about two years to peak. I do think the Rituximab treatment has been the only thing so far to slow (and seems in my case to have stopped) the progression. I have insurance through my work so I’m not sure about Medicare coverage but I’d imagine it would. Your doctor will be your best advocate. Take good care!
    Heidi

    December 13, 2017 at 8:28 pm

    Hi Micky,
    I also have anti-MAG neuropathy (diagnosed about 2 years ago-much the same as yours). I have been on this forum for about a year. I started my treatment journey with steroids that did nothing. Also 6 months of IVIG infusions monthly. That didn’t do anything either and I felt my disease progress throughout these treatments. I had Rituximab last February and again this August. There has been a definite modest improvement-not earth shattering as I still need a cane and wear braces for foot drop-however I do feel more stable, my endurance is better and I am grateful that it has stopped the progression for the time being. I intend to have another round in Feb. of this year and I guess I’ll keep going at this pace of treatments as long as it keeps me stable and hope for a bit more improvement. There is so little information about treatment for anti-MAG but I do feel that the Rituximab is a reasonable route to go. I tolerated it extremely well-no side effects whatsoever so that is good. Take care and keep us posted on your situation.
    Heidi (from Massachusetts, USA)

    November 12, 2017 at 8:05 pm

    Hi Matou,
    Is that Facebook page only for French speakers?
    Thanks!!
    Heidi

    August 24, 2017 at 1:06 pm

    Hi 5523Cats and Matou,
    The company that makes that orphan drug is called Polyneuron. I actually contacted the lead authors of the article that we have been talking about, http://www.pnas.org/content/114/18/E3689. They told me to monitor Polyneuron’s website for info on a clinical trial. They said most likely a trial will begin late 2018-2019 and would consist of folks in Switzerland (Matou you might be close enough to be considered in the early trial since you are in France). I just finished my second treatment (4 weekly infusions) of Rituxan. I didn’t see any improvement on my first treatment 6 months ago but thought I’d give it another chance as long as insurance would cover it again. I have found a few more anti-MAG folks from the USA and have sent them info on how to join this forum so we may have more people to share with. Take good care everyone!
    Heidi

    August 14, 2017 at 5:23 pm

    Dear Matou and 5523Cats,
    This information about the work at the University of Basel regarding the synthetic carbohydrate treatment for anti-MAG is very exciting! I have sent the link to my neurologist as well to see what he thinks. I will keep you posted on feedback I get. Also, I shared that orphan drug information with them. I am not a chemist so am not sure if the orphan drug information is the same drug that was used in the Basel study but will also let you know if I find out. Take care everyone!
    Heidi

    July 27, 2017 at 1:18 pm

    Hi..This response is for 5523Cats….not sure if you were asking me (Heidi) or Jim the previous question but I will answer for my situation. I was a very active person, diagnosed with anti-MAG two years ago at the age of 58. Tingling, numbness and decreased balance and strength have been my symptoms. I had prednisone, IVIG and one course of Rituximab with no improvement. I have been approved for a second round of Rituximab next month. I don’t know if it’s helping and it may be slowing progression but since I don’t have a sense of what it would be like without, I’m not sure. I still try to stay as active as I can but have had to cut work hours and limit what I can do in the yard. Use a cane and have great difficulty with stairs. You sound like you are still very functional which is terrific. I tolerated the first round of Rituximab very well-no side effects so that is good I just don’t think it helped me. I believe it does help some folks so best of luck moving forward. Heidi

    July 12, 2017 at 10:32 am

    Hi,
    I was diagnosed with anti-MAG in the fall of 2015 at the age of 58 however I am new to this forum. I went through steroids, IVIG and one course of Rituximab. Thus far, my condition has continued to progress. Does anyone know if there are treatments or trials beyond Rituximab that anyone is pursuing? It is a frustrating condition for sure but I hope that more studies/research will be conducted. Thanks!
    Heidi