Treatment Program

    • Anonymous
      March 9, 2011 at 11:55 am

      Hello Again,

      Just saw my neurologist today. We discussed treatment options. She recommends starting out with just IVIG. No steriods as she said with my age (36) would not recommend doing long term steroids usage b/c of the side effects. She said that she will fight to get the IVIG approved through insurance one way or another so hope to get in for that very soon. All my markers indicate CIDP, including the spinal tap protiens and the antioboies in being raised, along with the EMG testing. Do you all think this will help get the IVIG approved through insurance? They do the IVIG in their office and said they have 30 patients currently getting IVIG.

      One thing I was confused about is she said she was hopeful IVIG would work and stop the progression but didn’t seem real hopeful that I would regain what I have already lost? She said we caught this early so it is true that I can still walk etc. although it is a struggle to get up and down stairs. I would like to see improvement, have any of you seen improvement after IVIG verses just remaining the same?

    • Anonymous
      March 9, 2011 at 12:53 pm

      hi there and i’m sorry you are goinng through this. i am 36 as well and was told by my nuero that steriods in low doses were fine. i was also told that because of our age we have a better chance of regainging everything.
      with that being said…my nuero also explained that to really know what residual effects i would have to wait 1-2 years after i fisrt starting feeling anything.
      i am at a year.
      i was a little worse off then what it sounds like you got hit with though…i was in a wheelchair and in the hospital for two months.
      glad you caught it early.
      okay so now for your question. i definately feel a boost of energy and strength about a week after my ivig. i believe that the combination of steriods and ivig is what is working for me.
      good luck

    • Anonymous
      March 9, 2011 at 2:32 pm

      I am quickly approaching the 60 year old milestone, so I am not as young or resilient as you with this condition. I was diagnosed late last summer (even though I think the symptoms started in my 40s) after having abnormal lab work, nerve conduction studies, and sural nerve biopsy. My neuro is also hesitant about corticosteroids because of the side effects. He said that the treatment with the least side effects is IVIG. That is his preferred method of intial treatment. However, I have had only minimal improvement, but I realize that it might take longer because of my age.

    • GAT
      March 9, 2011 at 3:06 pm

      if you read the forum lone enough you will find the stuff effects each one different.For me I have been on IVIg for two years. my Neuroligist would not consider steroids because of side effects. my issue is pain not mobility. I have improved lots since I started 40grams monthly. if you chart your condition with your schedule of IVIg, weather,stress,and tons of other factors you will find some days a truck ran over you and some days you fell OK. that was what my neuroligist told me about any autoimmune and I think she ws correct.

    • Anonymous
      March 9, 2011 at 3:27 pm

      Yes IVIG helps me a lot.

      Without it and the gabapentin I would not function

    • Anonymous
      March 9, 2011 at 4:06 pm

      Thank you all so much for the information. I am hopeful that since this has seemingly been caught early and possibly prior to me getting much worse the treatment will work and hopefully I will improve. I will keep you all posted as it does seem this all impacts each of us differently and the same with the treatments. All of you stories have really helped educate me to this crazy disease. Much Appreciation for you all and this forum.

    • March 9, 2011 at 9:57 pm

      I am currently being treated with just IVIG, like you i can still walk without assistance–but it is more difficult and tiring than before cidp. I think neurologists often base the treatment on now bad the disease is. mine started with ivig (2 gm per kg) every 12 weeks. We did this for a year. I did not worsen-but no significant improvement either. In december we increased it to every 6 weeks (still on loading dose) too early to tell if its improving things yet. at my request we added a trial of high dose prednisone–it was not effective for me, in fact- made me worse, so be careful. My opinion is–even though my cidp is not as bad as it could be–why wait for it to get worse. I feel like its not being treated aggressive enough, ive mentioned more ivig, plasma x/c etc and am not getting anywhere—-so Im off for SECOND OPINION!! hopefully this helps–give your neurologist a fair chance and listen to his/her opinions but if you truely feel their not doing everything that can be done for you then keep searching. Good luck Lori

    • Anonymous
      March 9, 2011 at 10:52 pm

      I started IVIG in April of 2010. At that time, my doctor told me that IVIG was helpful in about 60% of cases of CIDP. He also told me that in the event IVIG was effective, it could actually help nerves heal and regenerate. I started out at 40 grams of Gamunex every two weeks. After a couple of severe flare-ups, my neurologist determined I was under-medicated at that amount given my weight, and in August of 2010 increased my dosage to 60 grams every two weeks, which is my current dose. In October of 2010 I underwent physical examination and EMG/NCV testing that confirmed nerve healing and regeneration. I certainly have some permanent numbness and loss of function, but I am healing to a certain extent thanks to IVIG.

    • Anonymous
      March 10, 2011 at 10:53 am

      I was diagnosed with CIDP the beginning of March this year. They caught it early. I walked with no aids into the neuro’s office and straight into the hospital where 4 daily infusions of IVIG was waiting. I was discharged and started a 6 week regiment of weekly IVIG infusions with Solu-Medro. I just finished my 6th infusion yesterday. I stumble now walking with a cane. Now my GP wants me to go to Physical Therapy, when I can’t hardly walk. I feel like a golden goose with a rich HMO in my back pocket. I don’t know if I am expecting too much too soon or have too much time to feel sorry for myself. As far as talking to my GP, he is a great guy but knows zero about GBS or CIDP, my neuro has about 45 seconds to answer any questions (if that) I ask and off to the next patient; she is very intelligent and knowable of GBS and CIDP. However, I haven’t seen her in almost 2 weeks and not scheduled for another 4 weeks, no contact for 6 weeks during O/P treatment. I don’t know what to do and who to talk to. I am 68 years old and have always been very active even after GBS in 2002. Should I push not to waste any more infusions and progress to the next treatment option.

    • Anonymous
      March 10, 2011 at 2:23 pm

      I started treatment for CIDP on October 1, 2007 with the 5 day loading dose. Even though I was in my early 60s at the time, I had been very active and in excellent physical condition. Steps had become a major problem, I could not stand for even a single full minute, and on the few trips I took, I required a wheelchair in the airport. I noticed no improvement after the loading dose, and no improvement after the next two maintenance doses given at three week intervals. However, after the third interval dose, I noticed improvement, and within the next several months I recovered 100% of my motor nerve use. I just returned from a ski trip to Colorado, if that gives you some idea of my recovery. I still use gabapentin because there is still some nerve discomfort, although that too has resolved to about 98% of normal. My doctor discontinued IVIG in July, 2009. I was not treated with corticosteroids. My doctor, who is one of the lead researchers and experts at Johns Hopkins, told me that 40% of CIDP patients have an excellent result with IVIG, another 40% show some improvement, and approximately 20% show no improvement at all. CIDP affects each of us differently. IVIG and other treatments also affect each of us differently. Starting out with ONLY IVIG would appear to be a common protocol. IVIG has been shown to have far fewer adverse effects than steroids. An expert’s opinion, preferably from one of the approved Centers of Excellence, may be something you should consider. I certainly consider myself extremely fortunate to have had a favorable outcome because, as you can see from the posts on this website, many do not. But I also credit an extraordinarily knowledgeable neurologist and excellent treatment protocols at Johns Hopkins for my recovery. I hope this helps.

    • Anonymous
      March 11, 2011 at 9:54 pm

      [COLOR=black] [/COLOR]
      [COLOR=black]In order to help answer your question, I need to get the time line correct. You had four infusions in the hospital less than two weeks ago, then one last week and one today, for a total of six, right? If so, then you may be someone who does not respond as quickly as others do. While many people do have very fast response, others often need a more aggressive approach for a few months before having significant recovery. If I have the time line wrong, and you have completed the six weekly IVIg treatments with minimal improvement, then you might need to continue with the aggressive approach for another few weeks. There are other options to consider; talk (if you can) with your neurologist about plasmapheresis and immunosuppressants.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]By the way, PT is probably a good idea, as long as the therapist knows how to provide therapy to someone with CIDP.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]Godspeed in reaching recovery,[/COLOR]