Newly diagnosed with CIDP and Breastfeeding

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.

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!

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!