Hi I’m new to this group.
I am in the UK and would love to hear of anybody’s experience with CIDP whilst pregnant as I’m really struggling at the moment. I was diagnosed at 5 months pregnant, however I had had a slow progression of symptoms for around 6 months. Coinciding with the onset of pregnancy my symptoms deteriorated rapidly. Since diagnosis in March, I have had 2 rounds of ivig, a high dose of oral steroids and a high dose of IV methylprednisolone. There has been no improvement, if anything I am getting worse. I’m at the point where I can only manage to get to the bathroom on my walker with assistance. Would love some info/experiences about if pregnancy has exacerbated symptoms and if any treatment worked whilst pregnant. I’m finding life so difficult at the moment. Thanks
Sorry I can't help with your question, but welcome to this group.
Also sorry to hear that you are having a hard time.
I'm British/Israeli and had GBS with morphed into CIDP.
When I had GBS I was paralyzed up to the chest, but got IvIg
and started to improve, but after a few months then developed CIDP.
This is now under control with monthly intravenous Steroid injections.
I'm not perfect, but about 95%.
Hope, and Pray, that you get sorted.
I hope you find lots of advice and I wish you all of the very best, both with the pregnancy as well as the progress of the CIDP, with hopefully a good outcome
I am not a patient but my brother was recently diagnosed (He has had three IViG treatments at 6-weekly intervals ) Unfortunately he must have had this slowly progressing condition fir more than 10 years and is now 67 years old.
There was slight improvement after the 1st treatment, slight relapse after the 2nd treatment and some improvement after the 3rd. He seems to have improved in being able to move his hands and feet (not very well), but only if he concentrates, and only if he can SEE the limb that he is trying to move. I deduct that the lack of feeling in his hands and feet (Possibly in his arms and legs as well) is responsible.
There are lots of information on this site, as well as many reports of progress and improvement. I hope and pray you will have success. Have courage and keep your fighting spirit up
Good luck and friendly regards,
Sorry, I do not know with regard to being pregnant, I am English based, in the Northwest. I was diagnosed in 2009 with CIDP and apart from steroid treatment which I had a bad reaction to, since then I have had no support or assistance, I was basically told by my specialist, nothing can be done, but to research it on the internet and look for support groups etc as this condition is rare and little is known about it. I came across this site, which to a degree has been quite helpful and informative. However, I believe this is mainly an American and outside the UK run site, and the big difference is the Private health care they have and our NHS, especially with regard to what is available and the time we have to wait for treatment/s etc. Anyway, keep your chin up, pester your specialist and maybe speak and voice your concerns to your midwife, she/he might be able to help or advise. All the best, take care and I hope it turns out right for you. Yours respectfully Mark A
I’m sorry you going thru this during pregnancy. I have not been pregnant but I can tell you my CIDP was difficult physically at first. November will be 2 years on IVIG 2 treatments a month. I do a Monday/Friday as it is to hard on my body without a break. I also get IV solumedrol every 3 days. Good luck and try to rest as much as possible. I know it’s upsetting. So I tried to find things I could do in bed
I was diagnosed shortly before becoming pregnant. My first pregnancy my CIDP hadn't fully "hit" and I did not have a full attack until after the birth of my baby. Then I had to be put on a loading dose (120 grams every 3 weeks) of IVIG to keep the symptoms away. Since then I had another baby and while my pregnancy allowed me to lessen my dose (105 grams every 3 weeks), since I had my baby this time I'm at 120 grams IVIG AND 10 mg of prednisone. I personally had the hardest time after the birth of my baby and trying to sort out what medication I needed to keep my symptoms at bay. I'm also on 150 mg of Imuran, but that takes 8-10 months to kick in so I'm still praying that works. Not as much you can do while pregnant, but hopefully your doctor has given you some additional options (ie rituxin) that may be available after you have your baby? I've heard that works well for some people when nothing else works.
How are you doing, Sarah?