Need help/ pregnant with cidp
AnonymousMarch 29, 2007 at 8:21 am
Hello to all. I have been trying to find any and all info on pregnancy with cidp and can’t find anything. Monica and I went for her spinal on Tuesday but would not do it or the blood work due to she thought she maybe pg well sure enough the test came back positive. Left the radiology and went right down stairs to the MDA clinic to speak with her Neuro of course she wasn’t in they told us to call her ass’t when we got home. Once home we phoned about 5 times and left messages each time, no return call. Yesterday we phoned 3 more times leaving messages also, once again no return call. Did not phone her family dr due to neither of us feels he knows much about cidp considering he is the one whom sent us to the MDA/Neuro in the first place. Monica could not get her 2 IvIg’s because the nurse that does that informed us that she has never given them to anyone who has been pregnant and we needed to speak to her Neuro. Also Monica quit taking any meds due to the dr not calling back. I realize she already has 3 small children and with this (cidp) it will be more on her. But she doesn’t believe in ending her pregnancy (unless medically necessary) which I don’t blame her it is her choice. But we need to get some info and find out what needs to be done next. Please if anyone knows of a web site on this or where we can get some info please let us know. We will be trying to contact the dr again today and will keep trying until we get an answer. Thanks for your help and support. God bless you all.
AnonymousMarch 30, 2007 at 4:17 am
You mentioned there was no real point in calling your GP, it might be an idea to do so though…. He may not know much about CIDP but he should be the one working for your daughters care and possibly might get further in contacting the neurologist than you have. I know when Dave was relapsing at one point we had called his neurologist and left messages saying he was crashing fast and we didn’t know what to do but we never got a reply. We went to see our GP and she started to call and the neurologist never bothered calling her back (the neurologist had previously declared that since Dave relapsed every 8 weeks that there was no point in treating him with IVIg since it cost too much with no real improvment). The fact is not all doctors are created equally. It may be time to look around and see if there is another neurologist in your area that is experienced with CIDP/GBS. Believe me 3 neurologists later (& 2years) to realize that most often your further ahead with a neurologist who specilises in this disease since it is so rare. We’ve found on our journey many neurologists that knew little more than the name CIDP. We found Dave’s neurologist by talking to a numberous people who live locally and have CIDP & are happy with a their neurologist. Everyone deserves to have proper and equal care. My boyfriend kept arguing at the start that he was seeing a neurologist and they were a specilist and that there was no point in changing, now that he has a doctor that works in his best interest he will never be ignored again! Besides the fact, for the first time he has is doing his best since before the illness.
I looked up Gamunex (which is the name of the Bayer form of IVIg) and pregnany on the internet and got this site [URL=”http://www.traqprogram.ca/partners/Gamunex%20Product%20Insert.pdf”][SIZE=1]http://www.traqprogram.ca/partners/Gamunex%20Product%20Insert.pdf[/SIZE][/URL] which basically gave me the print out that comes with the product and this is what it said about pregnancy
[FONT=ATTriumvirate-Condensed][SIZE=1][LEFT][SIZE=3][SIZE=2][COLOR=purple]Animal reproduction studies have not been conducted with GAMUNEX™. It is not known whether GAMUNEX™ can cause fetal [/COLOR][FONT=ATTriumvirate-Condensed][COLOR=purple]harm when administered to a pregnant woman or can affect reproduction capacity. GAMUNEX™ should be given to a pregnant [/COLOR][FONT=ATTriumvirate-Condensed][COLOR=purple]woman only if clearly needed[/COLOR].[/FONT][/FONT][/SIZE][/SIZE]
[SIZE=3][SIZE=2][FONT=ATTriumvirate-Condensed][FONT=ATTriumvirate-Condensed]The actual most that I found on it was at [URL=”http://www.umm.edu/altmed/drugs/067200.htm#Pregnancy%20Risk%20Factor”][SIZE=1]http://www.umm.edu/altmed/drugs/067200.htm#Pregnancy%20Risk%20Factor[/SIZE][/URL] which said it was Pregnancy Risk factor “C” and that [/FONT][/FONT][/SIZE][/SIZE]
Immune globulins cross the placenta in increased amounts after 30 weeks gestation.
When I first started to research IVIg I found some good info at [URL=”http://www.gamunex.com/index-Patient.cfm”][SIZE=1]http://www.gamunex.com/index-Patient.cfm[/SIZE][/URL]
Oh and I just found this…[SIZE=1][COLOR=navy]https://www.oxhp.com/secure/policy/ivig1.html[/COLOR][/SIZE] this site talks about IVIg and discuses safety of IVIg and pregnancy and misscarriges, but it does say “[COLOR=indigo]Most studies have observed no adverse effects for the mother, the pregnancy, or the newborns[/COLOR]”
Anyways hope some of that helps, and I hope you’re able to find the answers your looking for. Oh one suggestion as well, before your next visit/phone call start writting all your questions down… I found that I often forgot to address everything so now I have a list and make sure before the conversation is finished that I’ve asked everything – this makes it easier on you believe me!
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