Newly diagnosed with CIDP and Breastfeeding

    • June 11, 2017 at 1:53 am

      I am a new mother newly diagnosed with CIDP.

      I first had tingling fingers in Aug/Sep 2016 when I was 3-4 months pregnant. It was really mild. OB thought it was carpal tunnel.

      In late Nov 2016, I started to have tingling feelings on my toes and feet. OB still thought it was some weird pregnancy symptoms.

      My baby was born in Feb 2017. I expected the tingling to go away shortly after birth. But during the first 3 weeks postpartum, not only did the tingling not go away, I also developed weakness and numbness from knees down. I could not bend down and could not get back up without assistance. I was unstable when walking and could only walk really slowly. I had hard time climbing stairs.

      In Mar 2017, I had my first appointment with a neurologist and she diagnosed me with GBS. I started IVIG treatment in mid-April (20g, 5 days course). Followed up with neurologist a week later with no improvement. She then prescribed me with three more rounds of IVIG (20g, 5 days) to be infused monthly. Had 2nd dose in mid-May. Followed up with neurologist 2 weeks later with no improvement. At that point she referred me to see a Neuromuscular Specialist, who diagnosed me with CIDP in Jun 2017. Her plan of care is IVIG 50g 1 day every 3 weeks for the next 6 months. By now, my legs feel even weaker; I have this crawling feeling under my skin and occasional and mild pain in some spots on my feet. I have shaky hands and start to struggle using chopsticks (I am Chinese who uses chopsticks all my life). I can’t do much around my house since I have limited range of motion and I get fatigue so easily.

      -Does CIDP plateau or does it continue to gets worse until you find the treatment & dosage that works for you?

      -I read that the prognosis for CIDP is better if it is caught and treated early on? What is considered early? I am worried I am late on diagnosis, treatments haven’t been working, and I will have permanent disability.

      -When do I know if I actually respond to IVIG? How much time should I give to see if it works, if treatment is aggressive enough?

      -How do I know if my baby is affected since I started to have symptoms during pregnancy?

      -Doctors are ok that I breastfeeding while on IVIG. But if I am doing IVIG for 6 months+, is it still completely safe to breastfeed? My goal is breastfeeding for 2 years.

      Before I read about GBS/CIDP, I naively thought it could be treated immediately. Now I realize the recovery could be a long journey and may not be 100%. And it probably needs to be managed life long. I feel depressed, very helpless and useless. I feel my friends and family don’t understand.

      Thanks for reading…

    • June 11, 2017 at 9:20 am

      It sounds like you have gotten treatment very quickly. So,e wait months or years to get a proper diagnosis. Getting IVig is very difficult for many and you are lucky to get it right away, but it doesn’t always work for everyone, but it is probably the safest for you and the baby.

      But if it does not give you some good results after three months, it might be necessary to go with another treatment. Prednisone has worked well for me in improving strength and numbness, but the effects are very short-lived and the side-effects of weight gain and raising my blood sugar to the point of needing insulin make the long term use not good.

      Everything I research seems to have a downside, but my treatment was greatly delayed and I didn’t get a diagnosis until I could no longer walk, so there needs to be a lot of repairing what is broken.

      Your baby needs you to be healthy and the other drug options would very likely not allow you to continue breastfeeding. If IVig, doesn’t work, steroids and immune suppressants are the next options.

      Good luck and I do hope the IVig does start giving you good results.

    • June 12, 2017 at 9:06 am

      Hello, don’t feel helpless and too depressed just yet. You are right, getting diagnosed early on increases your chance of having a good prognosis. But you do need to find the right treatment. Give IVIG another try. If IVIG does work it can be a good treatment. I was diagnosed and received IVIG within 5 months of my first tingling and I am 5 years out now since first diagnoses. I also was a young mother with a toddler at the time of diagnosis. It was hard because I thought I was going to be weak and feeling sick forever. But the IVIG really helped me. I initially received a large loading dose and then started getting about 35 grams every 3 weeks. I am not still at 35 grams but I receive it every 5 weeks as a maintenance. I am one of the lucky ones I guess because i was treated so early. As long as I receive my infusion I feel almost normal. I have very minor issues (usually when I am getting close to needing my next infusion). I have not had to modify my lifestyle much and kept up with my daughter. I am not chiming in to make you feel bad because I am not having problems. I am responding to let you know that CIDP is not a death sentence and hopefully you will find the right treatment and go on with your life as close to normal as possible. Nothing much has changed in my life except I have to have an infusion every 5 weeks. I no do my infusions in my own home and they are not as invasive time-wise either. What use to take 5 hours now only takes about 3 hours as I am able to run the infusion at a high rate since I do not have any side-effects from Gamunux. So cheer up and try not to feel too depressed. Your state of mind really makes a difference as to how your body responds to CIDP. I do know when I get stressed or depressed my symptoms return and I feel icky. I also agree with LMayberry, if the IVIG does not help within the next few weeks then insist on another line of treatment so you can stop this assault on your nerves so you don’t have any lasting nerve damage. Good luck. Take one day at a time but do know that you can live a productive and near-normal life with CIDP. I have CIDP, CIDP does not have me!

    • B
      June 13, 2017 at 11:57 pm

      Congratulations on the birth of your baby and sorry to hear what you are going through. I am also a mother of young children (5 and 3) and was diagnosed when they were both in preschool.

      My understanding is that CIDP can go into full remission, or relapse and remit or progress. Not a very straight answer, but the disease varies quite a bit from person to person.

      I have also read that CIDP is more successfully treated if caught early on. I think your timeline qualifies as “early”. As someone mentioned above, some people wait years for a diagnosis and then months for treatment (darn insurance!). The IVIG stops your body from attacking myelin, which can repair relatively quickly. If you have axonal nerve damage, it can take quite a long time. I’ve heard that any nerve damage that doesn’t repair after 2 years may never repair.

      My neuro told me at the outset that I had to commit to 6 months of IVIG to evaluate if it is working properly, and I’ve seen other people on the forum report the same from their docs.

      I don’t have any insight on your pregnancy/breastfeeding questions since my diagnosis was after that stage for me. But my research says that CIDP is not hereditary or contagious (not sure about the GBS side).

      I have been relatively private about my diagnosis, but have sought support from this forum (mostly informational) and also a few facebook closed groups (informational but also more supportive). There are some good resources on this site to share with friends/family that educate laypeople pretty well about what you are dealing with. Good luck!

    • June 14, 2017 at 6:34 pm

      Thanks everyone for your reply and appreciate you took the time to share your perspective. It’s comforting that I have a medium to connect with you and learn about your journey as I am walking mine. I definitely will look into joining some Facebook support groups as well.

      I will, like you suggested, give IVIG some time. Thanks for giving me the perspective that I was diagnosed and got treatments relatively early on. And now it’s the trial and error stage to see what treatment, how much and how soon to keep my symptoms at bay. I am adjusting my expectation as I learn about CIDP. It’s just I am so eager to get some positive results and worried about getting worse. I did feel very weak last Friday (end of third week after my last treatment). I had a treatment with the new dosage Sunday and I felt not as weak (energy wise) after. Then I went to physical therapy and tried to get groceries (gotta feed the family!) on Monday and I got so tired so fast. I ended up shopping half way and had to stop and go home. I am still adjusting to what I can do.

      Chirpybirdy, are you able to walk normal, run and do exercise the way you used to?