need help to advise my mom(84) on CIDP treatment

    • Anonymous
      February 17, 2009 at 12:50 pm

      Hi, I am Martha’s daughter and new to this forum. When she was dxed in late Dec. at the Mayo Clinic, Jx.Fla. w/CIDP we were happy that a dx had been given for her declining condition and I found this website and joined the foundation for help and support. I have read a lot but still need to ask some questions to help advise my mom and her neurologist when I see them on the 19th ( this Thurs.)
      A quick background..Martha received a loading dose of IVIG between 12/17-23 and returned home to Greenville,n.c. where she lives in a continuing care community. {She has lived in her apt. independently there for 3 years and our main goal is to keep her independent for as long as possible. } She had to go to skilled nursing for 2 weeks because of her lack of balance and over all weakness. She then was admitted to in-patient rehab for 17 days where she did therapy 3 hrs./daily but they “released” her 2 weeks ago saying they had done all they could do. She was doing better but still very shaky and now has to have 24 hr. assistance because of the fall risk. No treatments were done in the rehab hosp., just therapy. We are going to see the Neurologist for the 2nd time since she came home from Mayo later this week.
      My main questions are…
      1. How long should you wait between IVIG treatments and how many treatments would you go through before you consider them “working” or a bust? My understanding is that nerves and the myelin sheath regenerate at 1″ per month at best so does that mean that if mom has no sensation from her toes up to her ankle that it would be at least 6 months before any sensation would return in say the bottom of her foot?

      2. Would you push for Plasma Phresis? ( could never spell!) as an alternate treatment? To complicate things, mom has macular degeneration and is now legally blind although she can see peripherially and I heard sometimes Plasma Ph. is used for a treatment for this condition in Canada. Losing her sight was difficult and now with the lack of mobility, it is really getting rough for her to be optimistic about the return to independence.

      3. How often should you have the EMG tests and is that the only way to measure accurately if the myelin is regenerating and therefore the treatments are working? Mom has only had the one at Mayo in Dec.

      Thanks to all of you who respond. As a daughter and long distance one at that, I am trying to help mom in any way to beat this and return to the active life she has lived.

    • February 17, 2009 at 1:14 pm

      sorry no info

    • Anonymous
      February 17, 2009 at 4:28 pm

      I was diagnosed with CIDP March 2008. I had my first loading dose in April. I made some improvement. I had fallen several times and could not get up, my husband had to help me dress if it went over my head since I could not lift my arms past shoulder heighth. I could walk but needed help to rise from a chair. Again, I improved some but not to the degree I had hoped. I was then given maintenance dose for the next two months (23 days apart). I made no improvement on the maintenance dose. I did not, however, lose any of the progress I had made from the initial loading dose. I was then put back on a loading dose. After two more months of IVIG and time off from work to sleep and rest (I took 2-4 hr. naps each day). I started improving. I improved until I went back to work and gave up the naps. The neurolgist was amazed at how much strength I had regained. I am now very functional. My quads are still not working so I can not get up from the floor without help. The dr. was so pleased that he talked about extending my treatments to every 30 days but to continue to receive the loading dose. However, I seemed to go downhill 2-3 days prior to the 23rd day. So, we adjusted to every 21 days. I have infusions next week and at that time I am scheduled for another EMG. I have not had one since last July. I am looking forward to seeing how much I have improved measured by those tests. I have not felt like there has been any improvement for several months. However, I went to my granddaughter’s soccer game last Saturday and felt much more confident walking across the uneven field than I had felt when I went to her games last fall. I think once you get to a certain point the improvement is much harder to detect. I made such great strides earlier. I do want to mention there is a lovely lady in her 90s where I receive my infusions. She lives on her own but gave up her car last summer. She has been receiving IVIG for several years. I have not seen her walk. She usually starts her infusion prior to my schedule and I finish prior to her. I hope this helps.

    • Anonymous
      February 17, 2009 at 7:51 pm

      thanks for your response. I have a question about your second loading dose.
      Are you saying that you had first loading dose and then several maint. ones then went back to a loading dose again? What kinds of improvement do you notice when you have the treatments that makes you think that they are working? Mother’s strength although minimal seems a little better but she is very tired from therapy sessions. I hear people say ” I felt better after my treatments” or like you noticed going downhill when you treatments stretched out too many days apart. What kind of things did you notice that would make you think you needed to get your IVIG soon? Mother’s calf muscles are like a bag of jelly and she can not get up and down from a sitting position by herself either, nor can she stand on her own. She can only get around in a wheelchair but must have help getting in and out of it too since her arm strength is not enough to support her 115 lbs.

    • Anonymous
      February 17, 2009 at 8:02 pm

      thanks for your information. I guess I thought that a loading dose was 5 days of treatment w/ IVIG in a row but apparently it means the concentration of medicine per dose. Mom had 5 days of IVIG and that is all. Since we had to take her to Mayo (500 miles from home) to get the dx and now are working w/ a local neuro. there has been no real communication between the two or should I say little communication of value. Mayo recommended 4-6 wks. of in-patient therapy and we were pushing it to get the 17 days she got.
      I thank you again for responding and we know her age has alot to do w/ her recovery rate but she was always such a young 80 year old and most drs. originally dismissed her neuropathy and falling just a old age related.

    • Anonymous
      February 17, 2009 at 9:17 pm

      My first IVIG was considered a loading dose over several days. The next two months the dosage, which was a maintenance dose, was half of the loading dose. After the first IVIG dosage which consisted of several days throughout a week, I improved. For the first few days afterwards I just felt, not really bad just kinda listless. About the third day I had more energy. Then I slowly had more strength, not a lot of strength, just more than I had. I still had to have help dressing, but I could roll over when sitting on the sofa and push myself up. This was disappointing because I thought with the one dosage of IVIG I would be back to normal. But, I was somewhat stronger in both my arms and legs. My next IVIG was half the orginal dosage. It too was over several days, but it took about half as long each of the days. That was May and June 2007. I did not improve on the reduced dosage, but I did not lose the strength I originally gained after my first IVIG. Again with each of the two maintenance infusions (May and June), for about three days I felt listless. Then my energy would improve but no increase in strength. In July, I went back to the increased load dosage. With the increased dosage along with taking long naps everyday I started gaining strength. After each IVIG during this period of time, it seemed to take 7-10 days before my energy level started improving. We moved the interval from 23 days to 21 days, when I noticed my energy level decreased and my legs had the wierd feelings running up and down of what I call “wired”. It is like the feeling you get when you hit your “crazy” bone in your elbow. That is as close as I can describe it. We did not change the interval until the December to January interval. I had notice in previous months that my energy had fallen off and my legs felt “wired” about three days before it was time for my infusion. But since I had gained strength (late October, November time frame) I had done something each month that the neurolgist thought had caused the problem. One time I walked down four flight of stairs. (You can see I have improved)!! He told me to make sure I kept consistent activity throughout the month to see if we need to move up the interval. So, I made sure during December I did not do anything out of the ordinary to cause the problem. And, I still had problems (lack of energy and “wired” legs) three days prior to the infusion. So for the interval between January and February we moved it up to 21 days and that worked. I had my last infusions on February 2 and 3. I will have my next infusions next week, February 23 and 24.

      Again, I have really improved. But, I am far from normal. I told you I walked down four flights of stairs. I can only walk up one flight and it is not a pretty sight. I feel like my legs look very wobbly (they certainly feel that way). But, I feel very functional and if I am not put in a situation where I have to bend too far down that requires quad muscles or walk up more than a few steps, I do not think anyone could tell anything is wrong. I can dress myself, dry my hair (hold the hair dryer over my head –yeah!!), put a dish on the second shelf in the cabinet. I can walk all the way through the grocery store — not just one aisle like before. I could not do any of those things before. Prior to CIDP, I had always been very strong. So, this has been quite a trip!!

      I hope you can make sense of my time frames above. I just thought of one more thing. Part of my diagnosis of CIDP was my responding to IVIG. Maybe your mother’s doctors want to see her response.
      Again, I hope this helps.

    • Anonymous
      February 19, 2009 at 1:21 pm

      As I understand it, plasma pheresis filters the plasma and replaces it with fresh frozen plasma or with a synthetic plasma. My son had PP initially and then was followed up with IVIG. Our doctors explained that PP should not follow IVIG as it would filter the medication from the blood, possibly reversing the benefit from the IVIG.

      My son (GBS Jan 2008 at age 18) was treated at the Regional Rehab at Pitt Memorial in Greenville, NC for his inpatient Rehab and my father (GBS 1993 at age 59/ MS dx in 2003) has been to the Outpatient Clinic at Pitt for PT. The OT and PT services are exceptional there if that is an option for your mother.

    • Anonymous
      February 19, 2009 at 10:38 pm

      It is a small world indeed. My mom was in Pitt Memorial in-patient rehab but does her outpatient at Cypress Glen where she lives. We did like the in-patient drs. and p.t/ot but it just wasn’t long enough for her but that’s all she gets they said.
      I hope your son and father at doing well now. You must be an expert in GBS not that you ever wanted to know so much about any disease.
      Dr. Bruer is mom’s dr. Who did you see?
      Warm Regards,

    • Anonymous
      February 20, 2009 at 10:39 am

      It really is a small world!:)
      My son was treated initially at Duke for five and a half weeks and then transferred to Pitt for Rehab for ten and a half weeks- I guess his age helped his recovery and his progress helped justify his length of stay for the insurance. When he was admitted to Pitt, he was still had a trach and Gtube and couldn’t move anything below his shoulders. He really had a tough road but worked hard; he was able to walk out at the end of his stay using only the cane. Now he is back to normal- what a change!
      My Dad did not have the degree of paralysis my son had- he was affected waist down and didn’t need inpatient Rehab. He was treated at Pitt Memorial for the acute phase of the GBS. His biggest obstacles have come from the MS. His mobility now is pretty limited-uses a walker for short distances and a wheelchair for going out.
      They both see a Neurologist at Duke- Joel Morgenlander who is wonderful. My dad did see Dr. Hardy in Greenville initially but decided to make a change when Dr. Hardy did not seem to listen to the problems he was having. His doctors at Duke diagnosed the MS.
      I guess the bright spot to this ordeal with GBS is that knowing what we did from my dad being sick really helped us to be the best advocates we could for our son. And since his case was more severe than his Grandfather’s, he really needed that. At the beginning when things seemed so bleak, he drew alot of comfort from his Grandfather’s visits.:)
      I hope your mother is able to get stronger and get back to being more independent. Please send her my best wishes for her recovery.

    • Anonymous
      February 20, 2009 at 2:36 pm

      Hello Joan,

      I am sorry that your mother has developed CIDP.

      It is difficult to say what the administration schedule of IVIg should be, as it depends completely on the individual’s response. Still, when first fighting this disease, people usually get 2 gram of IVIg per kilogram of body weight over five days, then 1 g/kg at least monthly for several months. By that light, your mother is overdue. However, did she have significant improvement in at least one area (strength in her legs or hands, or a reduction in sensory issues)? If she did, has she declined since then? If yes to both of those, I would suggest that the usual dosing and schedule be followed. It might be worthwhile to try a more aggressive approach, though, if no to either question.

      The Peripheral Nerve Society has published guidelines on dealing with CIDP ([URL=””][/URL]). Note, though, that these are only guidelines and that you and your mother should push the neurologist if what s/he is doing does not seem to work. However, you will need patience, as effects can a few months to see.

      As to plasmapheresis, that is part of my treatment plan. It works, but it carries some risk as well. If your mother does not have good venous access, she would need a catheter. The care and maintenance of one is a chore, and you need to carefully evaluate if her support team will do the necessary work. The actual process of plasmapheresis carries risk for fainting during and for a couple of hours after the procedure. Before starting plasmapheresis, I would discuss it with each of her specialists.

      Another issue with plasmapheresis is that it often does not work without other therapies as well. In my case, I take prednisone (large dose once per week) and Imuran (typical dose). Others do well with just plasmapheresis and a low dose of prednisone. You would need to evaluate her likely response to the other drugs she would most likely need to take.

      Godspeed in finding an appropriate treatment,

    • Anonymous
      February 22, 2009 at 7:04 pm

      Pretty interesting as mother used Dr.Hardy as well at first when she developed polyneuropathy and we did not like his lack of “bedside manner” nor his willingness to push for other reasons she was losing her balance/strength and that is one reason we decided to take her to the Mayo Clinic in Fla. for a second opinion. Dr. Hardy’s partner, Dr. Tony Bruer, has a very different manner and seems on top of things and we will work w/him now. Unfortunately, this weekend when I was taking her to Dr. Bruer for a follow up her blood pressure dangerously dropped and an E. R. visit ensued.
      she had an UTI and they thought that was the reason but SAt. came and she was not better so back to the ER and now she has atrial fib. plus the infection so we are in the new Heart wing at Pitt. Mom’s only consillation (sp?in having to be admitted was getting a room in the “fancy new wing”-one area of the hosp. she hasn’t previously been in.
      Thanks for the referral on Dr.Morgenlander. We will change if things don’t improve. She is going for an EMG on March 6th and then hopefully more IViG.
      So glad your son is back to normal childhood/ adulthood and that your dad can at least get around somewhat even if hampered by devices. I would be so happy if mom could transfer herself and be able to be more mobile. Maybe soon.
      Take Care.